Hello everyone,
I am sorry, I don't know where to start.
I feel silly because this isn't really about me I suppose, it's about my husband so I feel guilty that I am reaching out for support when he seems to be coping fine (or is he...)
All of you men are so strong, and at the moment, just one month after his diagnosis I am still struggling, my emotions are all over the place.
He has been diagnosed with Prostate adenocarcinoma,T3aN0M0, Gleason 4+5 PSA 9.1
10/21 cores positive
He has been told it is high risk.
53 years old
You all know what we have been through over the last month, as you have experienced this, but I keep using google (I know!) and one day I think yeah this is not so bad, he's going to be ok and then I read something else on a different day and go to a really dark place.
I have joined this morning and know that to read your stories is far healthier for me mentally. You are all so inspiring and well informed.
I want to be like that!
I have been to all of the appointments with my OH but I really don't want to miss a trick asking something in a consultation as I'm not fully clued up.
He got the diagnosis 4 weeks ago and is having RP on 10th June, which seems like an eternity away as this is 'high risk'. Anyway, the surgeon has already said that he won't be taking pelvic lymphs out, as he likes to leave them in as it gives him a better idea of what/where the cancer is going following the op.
Seemed ok at the time.
However, when we met the oncologist (to discuss radiotherapy instead of having the op) he mentioned that the scans show that OH has a 6mm lymph node - probably nothing to worry about as 'insignificantly sized'.
We are due to go and the the surgeon next week for pre-op chat and I wonder if we should ask if the lymph node should be taken out as well? Surely in anyone else it would be insignificant but if you've just been diagnosed with this and there is something in the lymph gland it's worth investigating??
Am I being OTT?
Should I just leave the professionals to their job or is it worth challenging this?
Not sure at the moment of course of action after RP - probably find out more after next weeks consultation.
Even if no one replies to me I feel better just having written this down and starting to make sense of it in my own head, so thank you
:)
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User
Hi Tulippy....let's start with the positives. Your husband is in the same boat I was. I was 46 and T3aN0M0 with something odd with one lymph node but they decided it wasn't cancerous. I was Gleason 4+3 at diagnosis.
I had a prostatectomy. I was upgraded to pT3b and Gleason 4 + 5.
I had a few but not many lymph nodes removed.
I was later told I had lymphoedema but I'm not convinced as it's never done anything.
Looking at where your husband is now, I'd say it's very likely he'll need salvage radiotherapy. I had this with 18 months of bicalutimide.
My PSA is now <0.006. This is the lowest reading possible on my hospital's machine. It has been like that for 5 years and the hospital considers me cured but won't use that word.
Take things step by step. Get the surgery out of the way. Don't get too far ahead of yourself, but looking at my case, know there is hope of a very good outcome.
User
Tulippy, sorry you find yourself in this situation.I had surgery at 62 and post surgery I was upgraded from T2* to T3a , but my Gleason was only 4+3. I did have positive margins and extra prostatic extension. My post op PSA was 0.03 but about 33 months after surgery my PSA breached 0.2 and at 0.27 three years after surgery,I started salvage RT without HT.
SRT didn't completely work for me and five years after SRT,I had my first course of SABR treatment to a single lymph node. A few months ago ( nine years after surgery) I started six months of bicalutamide and had a second course of SABR treatment to another pelvic lymph node, I now await the outcome.
Detection methods have improved in the last few years and my SRT was done on the basis of "an educated guess based on years of experience and data".
I was supposedly non nerve sparring, but I do still get the odd surprise.
Lots of tools still in the box, so stay positive.
Thanks Chris
User
I had T3bN0M0 diagnosis and I decided to opt for RP on recommendation of the MDT. It included pelvic lymph node removal (36 in total). It seems some surgeons are more keen to do speculative lymphadenectomy than others. In my case it led to post surgical complications (lymphocele) but one of the nodes did turn out to be cancerous. I also started with very slight lymphoedema (just around the pubic bone and top of the right thigh). However following salvage radiotherapy to the prostate bed it started to affect the whole of the leg. I now have wear a compression stocking. This is by no means an expected outcome but as Andy says you do run the risk.
User
In this sort of situation ultimately you have to trust your Surgeon if your husband has decided on surgery. However, it has to be said that some surgeons are more keen than others to remove Lymph Nodes and will consider each individual case. So it is possible that a different Surgeon might take a different view on this. Was RT and option offered and considered when the MDT discussed and reported on his case? This is a very important decision for a man to make and a Urologist should be prepared to answer questions and justify his/her approach in this case.
If the MDT thought RT of one sort or another would be an option, it would seem sensible for your husband to discuss this with an Oncologist.
The Pros and Cons of both types of treatment are detailed in the 'Tool Kit' but one does not know how lightly or severely will impact an individual in terms of both the treatment and particularly of side effects, the range and intensity of which can vary from man to man. Then with RT it is mostly accompanied with Hormone Treatment which can go on for anything up to 3 years. So whether this would apply and for how long envisaged should be asked of an Oncologist if RT is being considered. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100
Edited by member 20 May 2023 at 21:51
| Reason: Not specified
Barry |
User
Hi Tulippy,
You sound just like me. I really struggled initially around diagnosis and if honest still have days where I go into a bit of a panic mode.
There are lots of wives and partners on here and it’s really good to have their input and support….as well as all the great men on here.
My husband was diagnosed T3a N1 M1b Gleason 4+3 initially. We had another opinion and that took away the M1b. He had a PSMA pet scan before surgery and that confirmed the lymph node. The surgeon removed 14 lymph nodes…one had cancer in. He post op numbers were T2 N1 Gleason 4+5. He didn’t take too many nodes because of the lymphoedema risk and he hasn’t suffered thankfully.
His psa has just started to rise though nearly 18 mths on from surgery….so I suppose could be more nodes or the original bone met.
I think I would want to know about the node because there is a chance if they get it all he won’t need any more treatment in the future. Always a chance of micromets of course.
It’s a really scary time but so many options of treatment which we are still very thankful for.
Take care
Elaine
User
Imagine the prostate is a small orange. In your OH's case, the cancer has broken through the flesh and reached into the pith. The surgeon is planning to remove the orange, the pith and the peel in the hope of getting it all but it may be that the cancer is already on the outside of the peel and has spread to the apples in the fruit bowl - if that's the case, he may need adjuvant or salvage RT later.
You do seem to be rushing into this a bit. It's a big decision to have a treatment knowing that it might not be successful and the other treatment will be needed anyway - just doubles the risk of side effects. But if that's what you have decided to do and you understand the full implications of the treatment plan, that's fine. Has the surgeon said that this will be non nerve-sparing surgery?
To be honest, I think the lymph node is a bit of a red herring and you need to understand more about whether it is nerve sparing or not.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Tuilippy, I was stage T3b (PSA 37, Gleason 4+3) on diagnosis and also opted for (partial nerve sparing) RP. My post op histology came back with a positive margin and a PSA of 0.28. I knew this outcome was always a possibility but it is nevertheless a huge blow after getting over surgery.
Once your OH gets the PSA result (and depending on the score) they may look to doing a scan such as a PSMA PET scan to detect any residual cancer. I know that any aches or pains at this stage do immediately make you think it's bone mets but that's unlikely to be the case. I ended up having six months of HT plus SRT to the prostate bed last October. So far my PSA has been undetectable. So don't despair, there is still a curable pathway open to your OH.
User
Tulippy, my salvage RT was three years after surgery so there is probably a difference in our situations, but you won't know until tomorrow. So six years ago I was being advised by the members on here to get a PSMA scan. Back then they were not used as much as now. My oncologist said no and at the time my surgeon said if they found something outside the prostate bed then then salvage RT would no longer be offered and it would be straight onto HT, thankfully things have changed.
My oncologist said RT to the prostate bed was "an educated guess based on years of experience and data" . My PSA went from 0.27 down to 0.04 then slowly crept up again so it is possible the cause of the 0.4 was outside the prostate bed. We were going to wait until the PSA hit 8 or 10 before having further treatment or a PSMA scan but advances in scanning and perhaps a push from me meant I had a PSMA scan last year at 1.4.
Nothing was seen in the prostate bed but a lymph node lit up. So either the SRT killed all the cells in the prostate bed or they are too small to see. The lymph node was treated with 5 SABR treatments in August last year but PSA continued to rise and another PSMA scan in April this year lit up another tumor and showed a residue in the tumor detected last year. I had another 5 SABR treatments to the new tumor in June and started on six months of bicalutamide.
I am quite happy to have treatment after treatment rather than go to a life time of HT. The second lot of SABR was paid by my wife's work health insurance and it is not cheap, but the oncologist has more options in the private sector.
I was upgraded to T3a after surgery, had positive margins a extra prostatic extension.It took nearly three years for my PSA to reach 0.2 and was 0.27 when I started SRT.
I just keep on going, I have a philosophy when faced with a problem, can I do anything about it ? if no ,there is no point worrying,if yes get on and do it. Stay positive.
I really hope you get a good result tomorrow.
Thanks Chris
User
Hello everyone,
I am sorry, I don't know where to start.
I feel silly because this isn't really about me I suppose, it's about my husband so I feel guilty that I am reaching out for support when he seems to be coping fine (or is he...)
All of you men are so strong, and at the moment, just one month after his diagnosis I am still struggling, my emotions are all over the place.
He has been diagnosed with Prostate adenocarcinoma,T3aN0M0, Gleason 4+5 PSA 9.1
10/21 cores positive
He has been told it is high risk.
53 years old
You all know what we have been through over the last month, as you have experienced this, but I keep using google (I know!) and one day I think yeah this is not so bad, he's going to be ok and then I read something else on a different day and go to a really dark place.
I have joined this morning and know that to read your stories is far healthier for me mentally. You are all so inspiring and well informed.
I want to be like that!
I have been to all of the appointments with my OH but I really don't want to miss a trick asking something in a consultation as I'm not fully clued up.
He got the diagnosis 4 weeks ago and is having RP on 10th June, which seems like an eternity away as this is 'high risk'. Anyway, the surgeon has already said that he won't be taking pelvic lymphs out, as he likes to leave them in as it gives him a better idea of what/where the cancer is going following the op.
Seemed ok at the time.
However, when we met the oncologist (to discuss radiotherapy instead of having the op) he mentioned that the scans show that OH has a 6mm lymph node - probably nothing to worry about as 'insignificantly sized'.
We are due to go and the the surgeon next week for pre-op chat and I wonder if we should ask if the lymph node should be taken out as well? Surely in anyone else it would be insignificant but if you've just been diagnosed with this and there is something in the lymph gland it's worth investigating??
Am I being OTT?
Should I just leave the professionals to their job or is it worth challenging this?
Not sure at the moment of course of action after RP - probably find out more after next weeks consultation.
Even if no one replies to me I feel better just having written this down and starting to make sense of it in my own head, so thank you
:)
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User
Removing pelvic lymph nodes (Pelvic Lymph Node Dissection, PLND) introduces the risk of causing lymphedema, which is why your surgeon is reluctant. If the affected node is draining directly from the prostate, the risk of this is very low, but if lots of nodes need to be removed to get to the affected one, the risk of lymphedema increases. In this case, it might be better to treat the lymph nodes with radiotherapy. On the other hand, you probably want to keep radiotherapy in reserve in case he gets a recurrence later. That might suggest doing the prostatectomy without PLND, and then waiting to see what happens with PSA, and only doing radiotherapy if the PSA level suggests this is necessary, which might be what your surgeon is suggesting.
If they were sure the lymph node contained cancer, then they might suggest just radiotherapy to prostate and lymph nodes. Working out if the lymph node is cancerous would require a PSMA PET scan (for which there's quite along waiting list), or putting him on hormone therapy for a while and see if that causes that lymph node to shrink (in which case you would infer it did contain cancer which has shrunk under the effect of hormone therapy).
These are things to discuss with your clinicians, but the option it sounds like the surgeon has gone for does seem like one of the sensible ones.
User
User
Have sent you a message. At this point no question is a silly question and now is the time to discuss everything and anything. My husband had his surgery 14 months ago and they took lymph nodes too (seem to recall 6 or 7). I’m not sure if this is norm or based on his Gleason, PSA, age etc. You are not being OTT and definitely ask the question. Hope your bearing up x
User
Hi
You are not being OTT or should feel guilty. You are brave and a caring, loving wife.You are in shock as we were when my consultant told me that I had PC. That was 13 years ago when I had robotic prostatectomy. It was being in a vortex of emotions, fear, the thought not being able to see our grand children growing up and above all leaving my wife I have known now for 62 years.
You have to be careful what treatment to go for. Every consultant tends to favour his/her specaiism. Surgery is a reasonable choice because it will remove the prostate and cancer in it. If it has spread to the lymph glands then radiation therapy is a good back up option. Get a lot of advice. Survival rate nowadays is excellent with a battery of treatments available. It is good that you are on this forum which will help you to remain optimistic. I wish you both well.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Hi tulippy
When the surgeon says he will “take as much as he can around the prostate” he means he is aiming for a clear margin of cancer free tissue.
The specialist nurses at PCUK are a great help, and can steer you too, so maybe give them a call? Hope this helps x
Edited by member 22 May 2023 at 21:53
| Reason: Not specified
User
Hi Tulippy_123,
My dad was in a similar position not knowing which route to go down as the cancer had escaped the capsule. We opted for surgery in the end and he’s received his post op histology today. They decided not to remove his lymph nodes. His PSA is undetectable for now which we were told is very positive considering his cancer got upgraded to Gleason 9 from 7. He had a small margin of 4mm on the edge of the prostate meaning he likely will need radiotherapy at some point but he could be lucky and it’s all removed.
Hope that helps. My dad has also recovered well from the surgery. I hope everything goes well with your husband’s treatment.
Kind regards,
WD_95
User
Hello tulippy, whilst I can’t offer any advice re adjuvant radiotherapy, there are plenty of guys on here that can. It’s such a rollercoaster so please keep reaching out. Have you thought about calling the specialist nurses on the helpline? I have done numerous times and they are fabulous and will give you advice and support too. No question is a silly question. Sending you both best wishes for next week x
User
You knew before the op that there was a good chance of needing adjuvant RT so in that sense, the pathology shouldn't be a big surprise. The question is why the surgeon was willing to go ahead with the op when many would have advised against it and recommended going straight to RT/HT with or without brachytherapy boost - but he & your husband obviously thought it was worth the risk.
Just because there were positive margins doesn't necessarily mean that there is loads of cancer left behind - the PSA test is a good indicator and it is possible that the positive margins were actually removed with the rest of the gland as they are quite small.
Re the tadalafil, two possible explanations. 1) it has been prescribed automatically by someone eho hasn't read his notes and hasn't realised he was non nerve-sparing or 2) it is because tadalifil brings oxygenated blood to the whole pelvic area which helps with healing generally.
Edited by member 16 Jul 2023 at 16:09
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
User
Bit harsh Lyn! Whilst tulippy knew that rt was highly likely, seeing the histology in black and white and trying to process all the facts whilst remaining positive is a different story!
User
Thank you to all of you for your support and advice, no matter what I just want honesty.
Chris you have lifted me a lot tonight 👍🏻
OH and myself still feel RARP was best decision at the time, and still now, as it’s got rid of most of the nasty stuff.
I understand now positive margins might not be as bad as I’m thinking and starting radiotherapy asap is the best option.
Does anyone know what a bad PSA result on Thursday would be? And does higher number mean more cancer is there, more than a lower number?
I read somewhere that someone said chemotherapy with the radiotherapy has better outcomes…is this an option we should bring up on Thursday?
Thank you again…just pouring myself more wine 😫
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User
I’ve had a lazy day and been on this wonderful site trying to look how we can make the best of tomorrow’s appointment, when we will find out OH’s PSA following unsuccessful RARP.
I know surgeon suggested few weeks back that adjuvant radiotherapy was next but after all my reading today I want to ask about having a PSMA before that treatment is started.
I know this will be dependent on his PSA but even if it’s low (below 0.2) I feel somewhere in my gut this might be beneficial, at his staging and high risk.
Any advice on this before I make myself look like a fool in there tomorrow will be greatly appreciated :)
OH has no idea about all this…total head in the sand therefore I also am feeling the added stress of making sure best decisions are being made.
Thanks 🙏🏻
Edited by member 19 Jul 2023 at 16:51
| Reason: Not specified
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User
Tulippy, my RARP, didn't eradicate my cancer but based on my post Op PSA it removed 99.7 of it. Removing the mother ship is often described as flawed thinking, I don't know. The senior onco at my hospital was a guest speaker at a support meeting and he believes in removal of the mother ship. Added,My prostate was removed with curative intent.
My salvage RT was given without a PSMA scan and although there was something in the prostate bed there was obviously something outside the bed.
Lots of debates on when to apply treatment.
Hope all goes well.
Thanks Chris
Edited by member 19 Jul 2023 at 18:05
| Reason: Clarity
User
Thank you Chris. Are you saying that because something was outside the prostate bed you would have benefited from a PSMA before adjuvant radiotherapy?
This is what I’m trying to understand, if we should push for a PSMA?
Kind words from you all, I’m having a bad night, cried because I couldn’t do a bin bag up!, and you all are helping me so much x
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User
I had a PSMA PET scan prior to my salvage radiotherapy. At the time of the scan my PSA would have been around 0.4 but the scan results were inconclusive. This can end up being the case and I've heard quoted the the success rate with this type of scan being about 80%. It's not available everywhere and which type of radioactive tracer you get tends to be depend on where you go. There are pros and cons with each type of tracer but you are unlikely to get a choice in the matter. It can certainly help pinpoint the cancer but there is no guarantee. The prostate bed is a likely source of the cancer if your OH has positive margins but with a T3b diagnosis it could also be in local lymph nodes. Did the RARP include adjunctive removal of local lymph nodes? If not then they may consider RT to whole pelvis rather than just the prostate bed.
User
With that pathology, a PSMA scan isn't really necessary and, in the long run, could put you in a worse position. It seems they are already planning to give adjuvant RT which will take out the bulk of whatever has been left in the prostate bed (if anything has been left). If you had a PSMA scan and it found PCa further afield, the possibility of adjuvant RT might disappear and he could be left with lifelong HT as his only real option. Giving the adjuvant RT / HT a whirl and seeing how it goes might suit your disposition better as it matches your decision to go for the RP knowing it might not be successful?
The PSA tomorrow might be significant or it might not. If it is greater than 0.1 I would expect a referral straight to oncology. If it is less than 0.1, you could ask to wait and see how the PSA goes over the next few months and only seek a referral to oncology if it rises. My husband had a poor pathology but he was in denial and refused to be referred to oncology until he absolutely had to - in effect, he had two years to recover from the RP before he had to face RT / HT. It wouldn't suit everyone but worked for him. That was nearly 12 years ago.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Okay - so just keep on top of them to ensure the PSMA scan is done without too much delay. Once the injections start, any mets should start to shrink and will be harder to spot on the scan. If it was my husband, I would probably also ask for a separate bone scan and, if the PSMA scan comes back clear or equivocal, a choline PET scan as well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Tulippy, I can't say I have ever seen a PSA result that was almost the same pre op as post op. Being an optimist I would suspect there was an error, perhaps clutching at straws here. Are you sure the post op result is not 0.9, and are you sure they have not read the previous result. 0.9 would still warrant action. Could he have been saying oh was still Gleason 9, post histology Gleason scores can go up or down.
My pre op PSA was 10, G 4+3, my histology was positive margins and extra prostatic extension but my post op PSA was 0.03.
Thanks Chris
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User
Removing pelvic lymph nodes (Pelvic Lymph Node Dissection, PLND) introduces the risk of causing lymphedema, which is why your surgeon is reluctant. If the affected node is draining directly from the prostate, the risk of this is very low, but if lots of nodes need to be removed to get to the affected one, the risk of lymphedema increases. In this case, it might be better to treat the lymph nodes with radiotherapy. On the other hand, you probably want to keep radiotherapy in reserve in case he gets a recurrence later. That might suggest doing the prostatectomy without PLND, and then waiting to see what happens with PSA, and only doing radiotherapy if the PSA level suggests this is necessary, which might be what your surgeon is suggesting.
If they were sure the lymph node contained cancer, then they might suggest just radiotherapy to prostate and lymph nodes. Working out if the lymph node is cancerous would require a PSMA PET scan (for which there's quite along waiting list), or putting him on hormone therapy for a while and see if that causes that lymph node to shrink (in which case you would infer it did contain cancer which has shrunk under the effect of hormone therapy).
These are things to discuss with your clinicians, but the option it sounds like the surgeon has gone for does seem like one of the sensible ones.
User
User
Tulipy_123 I’m concerned too but for the opposite reason! Re lymph node dissection - I’m confused Andy. My OH is Gleason 7 (4 + 3), T3a/b N0 M0 had has a PSMA pet scan (private) no spread shown yet his surgeon is adamant that he wants to do extended radical lymphectomy even though I queried the risk of lymphodoema. He says there could be a risk of micromets… any thoughts?
User
KD, the scan will pick up mets of a few millimeters, but it won't pick up smaller ones. Micro-mets refers to mets which are too small to see on a scan.
Not many surgeons will operate on a T3b. I would say that being age 66, T3b, and they (rightly) consider a risk of micro-mets, I would ask why he's not considering external beam radiotherapy or HDR brachytherapy boost (a combination of HDR brachytherapy plus a reduced dose of external beam radiotherapy to mop up micro-mets), rather than surgery?
The considerations are different for someone who's 53 and is therefore looking for a much longer period of remission.
User
Thanks Andy- so in my OHs case the surgeon is being extra careful. It’s unclear if there is seminal vesicle involvement. MRI said yes. The MDT weren’t sure and the PSMa scan was unclear. OH wanted to avoid hormone therapy so we were happy to accept surgery. Hope that’s the right decision- time will tell I suppose.
User
Have sent you a message. At this point no question is a silly question and now is the time to discuss everything and anything. My husband had his surgery 14 months ago and they took lymph nodes too (seem to recall 6 or 7). I’m not sure if this is norm or based on his Gleason, PSA, age etc. You are not being OTT and definitely ask the question. Hope your bearing up x
User
I had T3bN0M0 diagnosis and I decided to opt for RP on recommendation of the MDT. It included pelvic lymph node removal (36 in total). It seems some surgeons are more keen to do speculative lymphadenectomy than others. In my case it led to post surgical complications (lymphocele) but one of the nodes did turn out to be cancerous. I also started with very slight lymphoedema (just around the pubic bone and top of the right thigh). However following salvage radiotherapy to the prostate bed it started to affect the whole of the leg. I now have wear a compression stocking. This is by no means an expected outcome but as Andy says you do run the risk.
User
In this sort of situation ultimately you have to trust your Surgeon if your husband has decided on surgery. However, it has to be said that some surgeons are more keen than others to remove Lymph Nodes and will consider each individual case. So it is possible that a different Surgeon might take a different view on this. Was RT and option offered and considered when the MDT discussed and reported on his case? This is a very important decision for a man to make and a Urologist should be prepared to answer questions and justify his/her approach in this case.
If the MDT thought RT of one sort or another would be an option, it would seem sensible for your husband to discuss this with an Oncologist.
The Pros and Cons of both types of treatment are detailed in the 'Tool Kit' but one does not know how lightly or severely will impact an individual in terms of both the treatment and particularly of side effects, the range and intensity of which can vary from man to man. Then with RT it is mostly accompanied with Hormone Treatment which can go on for anything up to 3 years. So whether this would apply and for how long envisaged should be asked of an Oncologist if RT is being considered. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100
Edited by member 20 May 2023 at 21:51
| Reason: Not specified
Barry |
User
Hi Tulippy....let's start with the positives. Your husband is in the same boat I was. I was 46 and T3aN0M0 with something odd with one lymph node but they decided it wasn't cancerous. I was Gleason 4+3 at diagnosis.
I had a prostatectomy. I was upgraded to pT3b and Gleason 4 + 5.
I had a few but not many lymph nodes removed.
I was later told I had lymphoedema but I'm not convinced as it's never done anything.
Looking at where your husband is now, I'd say it's very likely he'll need salvage radiotherapy. I had this with 18 months of bicalutimide.
My PSA is now <0.006. This is the lowest reading possible on my hospital's machine. It has been like that for 5 years and the hospital considers me cured but won't use that word.
Take things step by step. Get the surgery out of the way. Don't get too far ahead of yourself, but looking at my case, know there is hope of a very good outcome.
User
Hi
You are not being OTT or should feel guilty. You are brave and a caring, loving wife.You are in shock as we were when my consultant told me that I had PC. That was 13 years ago when I had robotic prostatectomy. It was being in a vortex of emotions, fear, the thought not being able to see our grand children growing up and above all leaving my wife I have known now for 62 years.
You have to be careful what treatment to go for. Every consultant tends to favour his/her specaiism. Surgery is a reasonable choice because it will remove the prostate and cancer in it. If it has spread to the lymph glands then radiation therapy is a good back up option. Get a lot of advice. Survival rate nowadays is excellent with a battery of treatments available. It is good that you are on this forum which will help you to remain optimistic. I wish you both well.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Hi Tulippy,
You sound just like me. I really struggled initially around diagnosis and if honest still have days where I go into a bit of a panic mode.
There are lots of wives and partners on here and it’s really good to have their input and support….as well as all the great men on here.
My husband was diagnosed T3a N1 M1b Gleason 4+3 initially. We had another opinion and that took away the M1b. He had a PSMA pet scan before surgery and that confirmed the lymph node. The surgeon removed 14 lymph nodes…one had cancer in. He post op numbers were T2 N1 Gleason 4+5. He didn’t take too many nodes because of the lymphoedema risk and he hasn’t suffered thankfully.
His psa has just started to rise though nearly 18 mths on from surgery….so I suppose could be more nodes or the original bone met.
I think I would want to know about the node because there is a chance if they get it all he won’t need any more treatment in the future. Always a chance of micromets of course.
It’s a really scary time but so many options of treatment which we are still very thankful for.
Take care
Elaine
User
Thank you everyone!
I think that at the apointment on Thursday we should ask
1) why no lymph node removal or at least further investigation
2) what is the plan after the RP.
At this point I cant think of anything else to ask. My head is spinning and just feel like we are on a really fast ride and can't get off!!
It's only been 4 weeks since diagnosis confirmed and he is having surgery in less than 3 weeks now.
I am still not totally sure what it means when surgeon is saying it has broken through the prostate - so where is it?
Surgeon said he will take prostate and as much around it as he can but what is around it to take...?
Maybe that should be another question.
Old Barry - we have also discussed radiotherapy with oncologist but chosen surgery as first option because OH has been told that the cancer is aggressive, so feel this is the best route.
Thanks again to you all x
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User
Hi tulippy
When the surgeon says he will “take as much as he can around the prostate” he means he is aiming for a clear margin of cancer free tissue.
The specialist nurses at PCUK are a great help, and can steer you too, so maybe give them a call? Hope this helps x
Edited by member 22 May 2023 at 21:53
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Imagine the prostate is a small orange. In your OH's case, the cancer has broken through the flesh and reached into the pith. The surgeon is planning to remove the orange, the pith and the peel in the hope of getting it all but it may be that the cancer is already on the outside of the peel and has spread to the apples in the fruit bowl - if that's the case, he may need adjuvant or salvage RT later.
You do seem to be rushing into this a bit. It's a big decision to have a treatment knowing that it might not be successful and the other treatment will be needed anyway - just doubles the risk of side effects. But if that's what you have decided to do and you understand the full implications of the treatment plan, that's fine. Has the surgeon said that this will be non nerve-sparing surgery?
To be honest, I think the lymph node is a bit of a red herring and you need to understand more about whether it is nerve sparing or not.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Apologies for not replying sooner JayneyP, I do appreciate your message.
I can't reply with a private message as I'm not allowed yet! I thought I'd also wait until we had the meeting with the surgeon, which was today.
I do feel surprisingly reassured and he did answer question re lymph gland - I did not realise that the cancer cells from prostate cancer will always show up on the PSA test, wherever those cells might go to....
So i do feel reassured that after the surgery, the PSA reading will give us an understanding of what is lurking in that lymph gland. If the PSA goes right down then it should be nothing nasty.
Surgeon has said that after the prostate is out and examined we can then look at what happens next - likely to be radiotherapy or combination of radiotherapy and hormone therapy. At the moment it is definitely information overload so we are just taking one step at a time.
Surgery in a few weeks...and then I am not looking forward to being on grass cutting duties!!! I hate gardening :)
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Hi Tulippy_123,
My dad was in a similar position not knowing which route to go down as the cancer had escaped the capsule. We opted for surgery in the end and he’s received his post op histology today. They decided not to remove his lymph nodes. His PSA is undetectable for now which we were told is very positive considering his cancer got upgraded to Gleason 9 from 7. He had a small margin of 4mm on the edge of the prostate meaning he likely will need radiotherapy at some point but he could be lucky and it’s all removed.
Hope that helps. My dad has also recovered well from the surgery. I hope everything goes well with your husband’s treatment.
Kind regards,
WD_95
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Hello everyone :)
Just a quick update - results of husband's non-nerve sparing RARP that he had on 10th June shows positive margins.
This is what surgeon letter says:
"Gleason 4+5 adenocarcinoma, margins positive (2mm right SV and 5mm bladder base) extensive extraprostatic extension T3a and T3b N0M0
Extensive high risk disease in and around the prostate."
He is having PSA test in 2 weeks and the results of that few days after. I did wonder the point of this as the PCa has not gone so PSA will still be raised but I presume this will be the benchmark going forward from here and through the adjuvent radiotherapy he has now been told he must have,
Seeing oncologist whenever we get an appointment and will go from there.
After expecting the RARP to bring better news and wanted negative margins this has come as another blow.
I don't fully understand all of the terminology in the letter from the histology and looking for for anyone to help me translate how bad this is. I know he's gone up from T3a to T3b but Gleason is still 9..
Also any advice on this adjuvent radiotherapy that you can give, especially any questions we should ask before seeing oncologist would be most helpful.
He's also been started on Tadalafil but I don't know why as there are no nerves so why would he go on this?
Feel like we're spiralling down a hole out of control :(
Thank you for all support x
Edited by member 12 Jul 2023 at 14:16
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Hello tulippy, whilst I can’t offer any advice re adjuvant radiotherapy, there are plenty of guys on here that can. It’s such a rollercoaster so please keep reaching out. Have you thought about calling the specialist nurses on the helpline? I have done numerous times and they are fabulous and will give you advice and support too. No question is a silly question. Sending you both best wishes for next week x
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Thank you for replying Jayney, I guess we’ll just see results of PSA test and we are presuming that the higher it is, means the more cancer that has been left behind.
I’m scared now as he has had back pain for a week, which he never has and I just feel that this is moving faster than we can!
Will discuss exactly what adjuvant radiotherapy means when we eventually see oncologist.
I feel all doom and gloom at the moment.
Maybe I will call the nurses, but find it hard to talk about things.
Hope things are ok with you x
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You knew before the op that there was a good chance of needing adjuvant RT so in that sense, the pathology shouldn't be a big surprise. The question is why the surgeon was willing to go ahead with the op when many would have advised against it and recommended going straight to RT/HT with or without brachytherapy boost - but he & your husband obviously thought it was worth the risk.
Just because there were positive margins doesn't necessarily mean that there is loads of cancer left behind - the PSA test is a good indicator and it is possible that the positive margins were actually removed with the rest of the gland as they are quite small.
Re the tadalafil, two possible explanations. 1) it has been prescribed automatically by someone eho hasn't read his notes and hasn't realised he was non nerve-sparing or 2) it is because tadalifil brings oxygenated blood to the whole pelvic area which helps with healing generally.
Edited by member 16 Jul 2023 at 16:09
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Tulippy, sorry you find yourself in this situation.I had surgery at 62 and post surgery I was upgraded from T2* to T3a , but my Gleason was only 4+3. I did have positive margins and extra prostatic extension. My post op PSA was 0.03 but about 33 months after surgery my PSA breached 0.2 and at 0.27 three years after surgery,I started salvage RT without HT.
SRT didn't completely work for me and five years after SRT,I had my first course of SABR treatment to a single lymph node. A few months ago ( nine years after surgery) I started six months of bicalutamide and had a second course of SABR treatment to another pelvic lymph node, I now await the outcome.
Detection methods have improved in the last few years and my SRT was done on the basis of "an educated guess based on years of experience and data".
I was supposedly non nerve sparring, but I do still get the odd surprise.
Lots of tools still in the box, so stay positive.
Thanks Chris
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Bit harsh Lyn! Whilst tulippy knew that rt was highly likely, seeing the histology in black and white and trying to process all the facts whilst remaining positive is a different story!
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Tuilippy, I was stage T3b (PSA 37, Gleason 4+3) on diagnosis and also opted for (partial nerve sparing) RP. My post op histology came back with a positive margin and a PSA of 0.28. I knew this outcome was always a possibility but it is nevertheless a huge blow after getting over surgery.
Once your OH gets the PSA result (and depending on the score) they may look to doing a scan such as a PSMA PET scan to detect any residual cancer. I know that any aches or pains at this stage do immediately make you think it's bone mets but that's unlikely to be the case. I ended up having six months of HT plus SRT to the prostate bed last October. So far my PSA has been undetectable. So don't despair, there is still a curable pathway open to your OH.
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Thank you to all of you for your support and advice, no matter what I just want honesty.
Chris you have lifted me a lot tonight 👍🏻
OH and myself still feel RARP was best decision at the time, and still now, as it’s got rid of most of the nasty stuff.
I understand now positive margins might not be as bad as I’m thinking and starting radiotherapy asap is the best option.
Does anyone know what a bad PSA result on Thursday would be? And does higher number mean more cancer is there, more than a lower number?
I read somewhere that someone said chemotherapy with the radiotherapy has better outcomes…is this an option we should bring up on Thursday?
Thank you again…just pouring myself more wine 😫
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I’ve had a lazy day and been on this wonderful site trying to look how we can make the best of tomorrow’s appointment, when we will find out OH’s PSA following unsuccessful RARP.
I know surgeon suggested few weeks back that adjuvant radiotherapy was next but after all my reading today I want to ask about having a PSMA before that treatment is started.
I know this will be dependent on his PSA but even if it’s low (below 0.2) I feel somewhere in my gut this might be beneficial, at his staging and high risk.
Any advice on this before I make myself look like a fool in there tomorrow will be greatly appreciated :)
OH has no idea about all this…total head in the sand therefore I also am feeling the added stress of making sure best decisions are being made.
Thanks 🙏🏻
Edited by member 19 Jul 2023 at 16:51
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Tulippy, my RARP, didn't eradicate my cancer but based on my post Op PSA it removed 99.7 of it. Removing the mother ship is often described as flawed thinking, I don't know. The senior onco at my hospital was a guest speaker at a support meeting and he believes in removal of the mother ship. Added,My prostate was removed with curative intent.
My salvage RT was given without a PSMA scan and although there was something in the prostate bed there was obviously something outside the bed.
Lots of debates on when to apply treatment.
Hope all goes well.
Thanks Chris
Edited by member 19 Jul 2023 at 18:05
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Im in agreement too Chris, always wise to remove the source if possible.
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Thank you Chris. Are you saying that because something was outside the prostate bed you would have benefited from a PSMA before adjuvant radiotherapy?
This is what I’m trying to understand, if we should push for a PSMA?
Kind words from you all, I’m having a bad night, cried because I couldn’t do a bin bag up!, and you all are helping me so much x
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I had a PSMA PET scan prior to my salvage radiotherapy. At the time of the scan my PSA would have been around 0.4 but the scan results were inconclusive. This can end up being the case and I've heard quoted the the success rate with this type of scan being about 80%. It's not available everywhere and which type of radioactive tracer you get tends to be depend on where you go. There are pros and cons with each type of tracer but you are unlikely to get a choice in the matter. It can certainly help pinpoint the cancer but there is no guarantee. The prostate bed is a likely source of the cancer if your OH has positive margins but with a T3b diagnosis it could also be in local lymph nodes. Did the RARP include adjunctive removal of local lymph nodes? If not then they may consider RT to whole pelvis rather than just the prostate bed.
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Tulippy, my salvage RT was three years after surgery so there is probably a difference in our situations, but you won't know until tomorrow. So six years ago I was being advised by the members on here to get a PSMA scan. Back then they were not used as much as now. My oncologist said no and at the time my surgeon said if they found something outside the prostate bed then then salvage RT would no longer be offered and it would be straight onto HT, thankfully things have changed.
My oncologist said RT to the prostate bed was "an educated guess based on years of experience and data" . My PSA went from 0.27 down to 0.04 then slowly crept up again so it is possible the cause of the 0.4 was outside the prostate bed. We were going to wait until the PSA hit 8 or 10 before having further treatment or a PSMA scan but advances in scanning and perhaps a push from me meant I had a PSMA scan last year at 1.4.
Nothing was seen in the prostate bed but a lymph node lit up. So either the SRT killed all the cells in the prostate bed or they are too small to see. The lymph node was treated with 5 SABR treatments in August last year but PSA continued to rise and another PSMA scan in April this year lit up another tumor and showed a residue in the tumor detected last year. I had another 5 SABR treatments to the new tumor in June and started on six months of bicalutamide.
I am quite happy to have treatment after treatment rather than go to a life time of HT. The second lot of SABR was paid by my wife's work health insurance and it is not cheap, but the oncologist has more options in the private sector.
I was upgraded to T3a after surgery, had positive margins a extra prostatic extension.It took nearly three years for my PSA to reach 0.2 and was 0.27 when I started SRT.
I just keep on going, I have a philosophy when faced with a problem, can I do anything about it ? if no ,there is no point worrying,if yes get on and do it. Stay positive.
I really hope you get a good result tomorrow.
Thanks Chris
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With that pathology, a PSMA scan isn't really necessary and, in the long run, could put you in a worse position. It seems they are already planning to give adjuvant RT which will take out the bulk of whatever has been left in the prostate bed (if anything has been left). If you had a PSMA scan and it found PCa further afield, the possibility of adjuvant RT might disappear and he could be left with lifelong HT as his only real option. Giving the adjuvant RT / HT a whirl and seeing how it goes might suit your disposition better as it matches your decision to go for the RP knowing it might not be successful?
The PSA tomorrow might be significant or it might not. If it is greater than 0.1 I would expect a referral straight to oncology. If it is less than 0.1, you could ask to wait and see how the PSA goes over the next few months and only seek a referral to oncology if it rises. My husband had a poor pathology but he was in denial and refused to be referred to oncology until he absolutely had to - in effect, he had two years to recover from the RP before he had to face RT / HT. It wouldn't suit everyone but worked for him. That was nearly 12 years ago.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thank you Lyn, can I just clarify something…are you saying if he has a PSMA scan and it finds PCa somewhere else, they would then not offer him adjuvant RT?
I don’t want to suggest a PSMA and then to have his options taken away.
Thanks, as always, for any advice, such a quick steep learning curve I’m on!!!
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Not a definite but certainly a possibility. If the PSMA scan found left over cells in the prostate bed and one or two ribs lit up like a beacon, some oncos would still be prepared to offer aRT and might even agree to aRT plus direct RT to the rib. That depends a bit on whether SABR / cyberknife is available in your Trust and approved by your ICB. If the PSMA scan identified a number of mets, the oncologist may advise that aRT is pointless because the cat is already out of the bag.
I am pretty sure that you would be able to cope with either of those scenarios - the thing that I wouldn't be so happy to risk is the PSMA scan coming back clear and medics advising to do nothing except repeat the scan in 6 or 12 months to see if something shows up then.
It is a question about personality and approach to risk, isn't it. My husband would not want any treatment unless he absolutely had to do it. There is no way he would have agreed to surgery knowing he would probably have to have RT anyway. I wouldn't want him to have a PSMA scan and then not be able to get travel insurance and have to stop doing the things he loves. You have a very different outlook - treat what we can and if more treatment is needed, so be it. On that basis, you have to balance the risk - don't ask for a PSMA or Axumin scan so that the aRT is definitely offered OR go for the PSMA / Axumin scan and hope that it finds one or two hotspots that can be treated. A clear scan puts you in no man's land and a scan lit up like a Christmas tree means no radical treatment offered.
Then there is one other consideration - how far would you have to travel for a PSMA or Axumin scan / how long might you have to wait / can you afford it if not available on the NHS?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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This is tough - at yesterday's 6 week follow up the consultant hit us with the news that PSA is still 9.
That's the same as before the RARP.
Prescribe 50mg Bicalutamide to OH (who ran to the chemist to get it and opened the pack and took a tablet before even leaving the pharmacy!!)
We were then just waiting for appointment to see oncologist and discuss start of radiotherapy treatment
However today he had a call out of the blue from the consultant who said after discussion with the onco they want him to go for PSMA scan asap.
I did mention a scan in yesterday's meeting but consultant said it would not be beneficial - obviously changed his mind!!
I'm all over the place and don't know what to think.
Any advice would be great.
Thank you so much.
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That's a lot of PSA - unlikely to be just some leftovers in the prostate bed. Did they say just bicalutimide or did they suggest hormone injections starting in a couple of weeks as well?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn,
Hormone implant in couple of weeks.
I imagine he’s spoken to oncologist who has gone whoooaaa!!
What the hell is going on??
I’m just trying to take some comfort from the fact that 9 isn’t mega high…?
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Okay - so just keep on top of them to ensure the PSMA scan is done without too much delay. Once the injections start, any mets should start to shrink and will be harder to spot on the scan. If it was my husband, I would probably also ask for a separate bone scan and, if the PSMA scan comes back clear or equivocal, a choline PET scan as well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Tulippy, I can't say I have ever seen a PSA result that was almost the same pre op as post op. Being an optimist I would suspect there was an error, perhaps clutching at straws here. Are you sure the post op result is not 0.9, and are you sure they have not read the previous result. 0.9 would still warrant action. Could he have been saying oh was still Gleason 9, post histology Gleason scores can go up or down.
My pre op PSA was 10, G 4+3, my histology was positive margins and extra prostatic extension but my post op PSA was 0.03.
Thanks Chris