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Disappointing news - cancer found in lymph node

User
Posted 08 Jan 2020 at 09:59

I had an appointment yesterday with the urology department at the hospital where they performed my prostate cancer surgery. They were generally pleased with my slow but steady recovery from the surgery itself. However, some of the news they shared with me was not entirely as good as I had hoped for.

They successfully removed the prostate and the lymph nodes as planned, but they had found cancerous cells in one of the lymph nodes and because of this they are referring me back to the oncology department at the referring hospital to investigate further treatment options. Treatment could involve hormone therapy or radiotherapy, or a combination of both. The term used was "adjuvant therapy" which I understand just means "extra" treatment after the primary therapy which was the prostatectomy.

Once again, I was told that I was young (!) and otherwise in good health, and that therefore the chances of an eventual curative outcome remained high, it would just be taking longer than originally planned.

My main feeling is one of disappointment, as I had hoped that I wouldn't need further treatment, but I will just have to deal with whatever comes next. I am now waiting for the oncology appointment.

As I mainly work from home I was already planning to start back on a part-time basis from next week, and I imagine that the part-time arrangement may need to go on for a while around whatever new treatment I have.

User
Posted 08 Jan 2020 at 12:58

hI, David, I am on hormone therapy for life and also chemo just now as well, working self employed part time, which can get physical at times too. I don't have any real problems with any of the treatments. Hope this may be of some use to you. The only reason I don't go back full time is because I gave a load of work away thinking I would be unable to do it all. You may find treatments are not as bad or time consuming as you first think.

I also had part of my colon removed with bowel cancer tumour in August, back living and working as normal within 5 weeks. I think if you are youngish (56) and quite fit, it makes the world of difference to how you cope with treatments.

 

Edited by member 08 Jan 2020 at 13:13  | Reason: Not specified

User
Posted 08 Jan 2020 at 13:26
They found one cancerous lymph node in my post operative histology report, but here I am, eighteen months later, cancer-free. Maybe the surgeon got it?

Keep calm and carry on.

Best of luck.

Cheers, John.

User
Posted 08 Jan 2020 at 19:03

Hi David, sorry to read this. My post op histology wasn’t great either and I have ended up having ADT and salvage radiotherapy. Side effects are certainly increased but I wanted another curative attempt. Have a read through my profile for more information.

My recent scores show things are stable.

Not great news, like you I had hoped the surgery would be the beginning and end of my cancer journey. 
I would advise doing some research and write down some questions for oncology.

If radiotherapy is planned ask what the dose will be and what pelvic areas will be targeted.

Ask if they plan any ADT before and/or after radiotherapy and for how long.

 

What is your current PSA?

Hope this helps.

Ido4

User
Posted 08 Jan 2020 at 21:14
DaveBaxt, some surgeons automatically remove a small number of pelvic lymph nodes during RP, just to check and confirm staging. A smaller number of surgeons only remove lymph nodes if there are suspicions.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 21:38
Hi David,

adjuvant treatment means that it is additional treatment that was either planned before the primary treatment even happened (e.g. some men decide to have surgery knowing that this will immediately be followed up with RT) or is arranged straight after primary treatment because the results indicated that the primary wasn't enough to eradicate the cancer (e.g. your situation). If someone has primary treatment that appears at first to have been successful, but then two or 10 years down the line the cancer recurs and additional treatment is needed, this is called salvage treatment.

The pathology result shouldn't make any difference to your plans to return to work part time and then full time. Oncology may just want to wait to see what your next couple of PSA results are. Alternatively, if they recommend RT with HT you will probably have the hormones for 3 or 6 months before the RT starts so work should not be affected. Even when you have RT, many men just carry on working through it; if you work from home it should be easy enough to plan your day. John had his RT session every morning at around 8.30am on his way to work, he worked full time throughout, went to the gym every evening and carried on playing rugby. Towards the end he needed a nap at his desk a couple of times and I guess if he had worked from home he would have gone for a siesta but the office chairs weren't very comfortable!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jul 2021 at 15:02
Hi MCD2021,

Yes, I am doing well, thanks. I am still being monitored with a PSA test every few months, but currently the PSA level is "undetectable" which is what everyone wants to hear.

All the best

User
Posted 13 Jul 2021 at 15:32

Fantastic news. Long may that continue! Take care and all the best

User
Posted 01 Oct 2021 at 11:49

sorry to hear about your diagnosis.

Hormone therapy plus radiotherapy was offered to me as a possible alternative to surgery, so it seems to be considered equally curative. There's plenty of info on this site and at Macmillan on different treatment routes.

In my case, the presence of cancer in a lymph node was only detected after the surgery, so I had a short course of hormone therapy (6 months) plus 6 weeks of radiotherapy as well as surgery.

I'm doing ok now, so there's always hope. Best of luck to you.

(By the way, you might get more responses to your specific questions if you start a new thread)

D

User
Posted 01 Oct 2021 at 16:59

Hi J

My husband was recently diagnosed PSA 8.3, Gleason 4+3=7, T3a N1 M0 (although original diagnosis was M1b before we got second opinion)

He did start on hormones because we thought it had spread to the bones, so had bicalutamide for 4 weeks and has had 1 prostap 3 injection. I think the preferred route for onco/uro at this stage would be RT but my OH has opted to have surgery as he just wants to get the bulk out and they will be taking the affected nodes also. It’s extremely likely he will need ART afterwards but that’s the decision he has made. He is quite a bit older than you, he’s extreme lot fit and healthy for his age so just hoping his recovery will go well.

It’s such a difficult decision to decide what is best but you definitely feel better when the decision is made either way.

Best of luck with everything 

Also…We are looking at this as a curative treatment plan as the uro said this to be the case. It’s completely normal to panic, we’re still in that stage some days but most days now are much better having got our heads around things.

Edited by member 01 Oct 2021 at 17:05  | Reason: Extra info

User
Posted 01 Oct 2021 at 23:04
I don't want to cause any distress but I think you should prepare yourself emotionally for the oncologist saying that you are incurable. That is significant lymph node involvement - they may be able to offer radiotherapy to a wider area of the pelvis to capture a couple of lymph nodes but I will be surprised if they can get all three. There is also a chance that even if they can zap the three identified nodes, it will pop up elsewhere - cancer in the upper iliac nodes is usually considered to be metastatic.

There is little point having your prostate removed now - all you will achieve is a) unpleasant side effects when you will be wanting to help your wife with a new baby and b) delaying radiotherapy (if that is what the onco does offer).

If you were in the UK, the most up to date hospitals would probably be offering you hormone treatment combined with enzalutimide, docetaxel or apalutimide and then possibly radiotherapy in 3-6 months.

Also worth pointing out that the cancer doesn't escape from the prostate (T3) and then jump to the lymph nodes (N1); it doesn't work like that. The T3 means that the cancer has escaped the gland and is invading surrounding tissue ... like a bad orange will start to go mouldy and then black on the outside of the peel. Positive lymph nodes are because the cancer is moving through the lymphatic system - the rotten juice from the orange has dripped onto a bunch of grapes nearby.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2021 at 12:43

So I’m not going to pretend to know where your affected lymph nodes are as I don’t, and I can see Lyn has great knowledge and experience of this disease so can advise you so much better. Therefore maybe it’s not as simple as this but can the nodes not be removed? 

I get that it must be in your lymphatic system but we’re definitely taking the chance that removing them might just do the trick. We know it is so likely that ART will follow and will get ready for that.

My grandmother at 80 had breast cancer, she had a mastectomy and they took 3 of her nodes under her arm (just in case) and it turned out 2 of the 3 had cancer. She had no further treatment and is now 94 and had no other problems with it so far.

I know her story isn’t going to be the same for everyone but we’re certainly living in hope and being positive that it could be the same for us.

I was looking through one of the other posts recently and someone (thanks to whoever this was) posted a video link to a pc seminar with a doctor…he was talking about oligometastasis and how opportunities to potentially cure were being missed even if it has spread. (Definitely worth a look) I do sometimes feel like I’m clutching at straws but I want to believe and be positive that we can overcome this and that’s what gets me through.

We’re never going to know if we’ve made the correct decision about opting for surgery but I do know we have gone with our gut and we’ll have done everything we possibly could to try and make a difference, so therefore we can’t have any regrets. 

My husband as I said is older than you and has retired so the worries of work etc and recovery time are not the same, so I know this can make a difference.

You obviously have so much to be positive about having a new baby on the way. I really wish you well with whatever you decide.

Edited by member 02 Oct 2021 at 12:54  | Reason: Spacing

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User
Posted 08 Jan 2020 at 12:25
Maybe click my picture and read my profile ?
User
Posted 08 Jan 2020 at 12:58

hI, David, I am on hormone therapy for life and also chemo just now as well, working self employed part time, which can get physical at times too. I don't have any real problems with any of the treatments. Hope this may be of some use to you. The only reason I don't go back full time is because I gave a load of work away thinking I would be unable to do it all. You may find treatments are not as bad or time consuming as you first think.

I also had part of my colon removed with bowel cancer tumour in August, back living and working as normal within 5 weeks. I think if you are youngish (56) and quite fit, it makes the world of difference to how you cope with treatments.

 

Edited by member 08 Jan 2020 at 13:13  | Reason: Not specified

User
Posted 08 Jan 2020 at 13:26
They found one cancerous lymph node in my post operative histology report, but here I am, eighteen months later, cancer-free. Maybe the surgeon got it?

Keep calm and carry on.

Best of luck.

Cheers, John.

User
Posted 08 Jan 2020 at 17:48

Sorry if I am hyjacking your thread , but may I ask a question. As they removed your lymph nodes , did they suspect there was a problem before using MRI, bone scans . Just wondering if this can be missed?  before deciding what treatment you decided on .Just trying to understand what all the different test results mean.Hope everything works out and good luck with the future.

User
Posted 08 Jan 2020 at 18:09

Hi DaveBaxt, my story in brief is this: after about 7 years of PSA monitoring due to BPH (enlarged prostate) my PSA level jumped suddenly, so I was referred to a urologist by my GP. The urologist ordered an MRI which showed a suspicious area in the prostate. I then had a transperineal biopsy that focused on the suspect area, and found evidence of cancer (Gleason 4+5, which I was told was "high" and "aggressive"). Due to the location of the cancer in the prostate, the consultant recommended removal of the lymph nodes. Hope that helps, and thanks for your good wishes.

User
Posted 08 Jan 2020 at 18:51

In my case the MDT suspected spread to the lymph nodes even though nothing was seen on the scan due to my relatively high PSA (32 at diagnosis). Hence the recommendation for me of HT followed by "wide beam" EBRT, rather than surgery.

If it's any comfort, I found RT to be a reasonably trouble-free experience. The only real side-effect was some bladder irritation and an increased frequency of peeing (up every 45m all night) towards the end of RT, but it quickly subsided once RT had finished.

Best wishes,

Chris

Edited by member 08 Jan 2020 at 21:17  | Reason: Not specified

User
Posted 08 Jan 2020 at 19:03

Hi David, sorry to read this. My post op histology wasn’t great either and I have ended up having ADT and salvage radiotherapy. Side effects are certainly increased but I wanted another curative attempt. Have a read through my profile for more information.

My recent scores show things are stable.

Not great news, like you I had hoped the surgery would be the beginning and end of my cancer journey. 
I would advise doing some research and write down some questions for oncology.

If radiotherapy is planned ask what the dose will be and what pelvic areas will be targeted.

Ask if they plan any ADT before and/or after radiotherapy and for how long.

 

What is your current PSA?

Hope this helps.

Ido4

User
Posted 08 Jan 2020 at 20:31

Thanks for that. Which has nicely explained it. I am beginning to understand a bit at a time. Thanks again.

User
Posted 08 Jan 2020 at 21:14
DaveBaxt, some surgeons automatically remove a small number of pelvic lymph nodes during RP, just to check and confirm staging. A smaller number of surgeons only remove lymph nodes if there are suspicions.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 21:38
Hi David,

adjuvant treatment means that it is additional treatment that was either planned before the primary treatment even happened (e.g. some men decide to have surgery knowing that this will immediately be followed up with RT) or is arranged straight after primary treatment because the results indicated that the primary wasn't enough to eradicate the cancer (e.g. your situation). If someone has primary treatment that appears at first to have been successful, but then two or 10 years down the line the cancer recurs and additional treatment is needed, this is called salvage treatment.

The pathology result shouldn't make any difference to your plans to return to work part time and then full time. Oncology may just want to wait to see what your next couple of PSA results are. Alternatively, if they recommend RT with HT you will probably have the hormones for 3 or 6 months before the RT starts so work should not be affected. Even when you have RT, many men just carry on working through it; if you work from home it should be easy enough to plan your day. John had his RT session every morning at around 8.30am on his way to work, he worked full time throughout, went to the gym every evening and carried on playing rugby. Towards the end he needed a nap at his desk a couple of times and I guess if he had worked from home he would have gone for a siesta but the office chairs weren't very comfortable!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jul 2021 at 10:58

Thanks to everyone for the information in this post. My partner (55) has just had a radical prostatectomy with removal of lymph nodes, and he has just been told the cancer had spread into one of the nodes. He was told it was ‘very aggressive’ with Gleason score of 4+3. Unfortunately, had to wait for surgery due to Covid. He is now 19 days post-op and still suffering with severe continence issues, so feeling very low. Doing pelvic exercises but if anyone has tried one of the machines such as Innovo, please let me know. Next step is PSA test in a couple of weeks. I don’t know how much we can hope that it hasn’t spread further, but trying to stay positive. Unfortunately, as you all know, it’s just something we now have to live with and monitor. 

User
Posted 13 Jul 2021 at 11:21

Hello, that sounds similar to what happened to me, in terms of cancer having spread to a lymph node. I was referred back to the oncology department and had 6 months over hormone therapy injections and six weeks of radiotherapy. Your partner may be offered similar follow up treatments.

The first few weeks after surgery can be very difficult, not least because of the pain and discomfort, especially if you try to do too much too soon (as I found to my cost!). Your partner has had major surgery, and it takes time to recover, however fit you may have been beforehand.

As for the continence issues, things do get better, though for some people (like me) it only improves gradually over months. Perseverance with the pelvic floor exercises is important (even though it can be boring!). i am now 18 months post-surgery and still have to use a thin pad to cope with "dribbles", but I manage to function perfectly normally otherwise.

Best wishes to your partner and to you

Edited by member 13 Jul 2021 at 11:24  | Reason: spelling

User
Posted 13 Jul 2021 at 11:28

Hi DavidF1955, thanks for your response. I take it you are now doing ok after your treatment? I’m going to discuss HT and radiotherapy with the consultant as they sound to be the standard. I’ve kept telling him he’s just had major surgery as he is really impatient and a keen cyclist, but thankfully the scars have healed really well and swelling has disappeared completely. 

RE: continence, thanks for the realistic advice. I was reading that lots of people were fine afterwards so it’s good to know he’s not on his own. Every time he stands up means a wee into a pad! He’s getting a little more control and is able to ‘push’ a good flow out now when he reaches the loo, so hopefully time will continue to show improvements.

All the best to you and hope you remain well x

User
Posted 13 Jul 2021 at 15:02
Hi MCD2021,

Yes, I am doing well, thanks. I am still being monitored with a PSA test every few months, but currently the PSA level is "undetectable" which is what everyone wants to hear.

All the best

User
Posted 13 Jul 2021 at 15:32

Fantastic news. Long may that continue! Take care and all the best

User
Posted 01 Oct 2021 at 11:24

Hi Folks, I've recently been diagnosed with PCa, PSA 10.2, Gleason 4+3 and been expecting to go in for RP, however my PET scan just came back showing that I have cancer in my lymph nodes. I've just seen the urologist so far (yesterday) and he's referring me straight to an oncologist - my PET scan says "there are F-PSMA-1007 avid lymphocytes in left external iliac and right common and distal common illiac stations. Lungs, etc all clear. 

I'm assuming at this point I go straight onto radiation and hormones, urologist said no point in RP at this time. Has anyone else had a similar diagnosis ? Is it still curable at this point ? I'm a fit 54 with a newly pregnant wife so trying to keep calm at this time ! 

Thanks,

J

User
Posted 01 Oct 2021 at 11:49

sorry to hear about your diagnosis.

Hormone therapy plus radiotherapy was offered to me as a possible alternative to surgery, so it seems to be considered equally curative. There's plenty of info on this site and at Macmillan on different treatment routes.

In my case, the presence of cancer in a lymph node was only detected after the surgery, so I had a short course of hormone therapy (6 months) plus 6 weeks of radiotherapy as well as surgery.

I'm doing ok now, so there's always hope. Best of luck to you.

(By the way, you might get more responses to your specific questions if you start a new thread)

D

User
Posted 01 Oct 2021 at 16:04

@jonolondon sounds very similar to what we're going through. My partner is 55 and although he took the major decision to have a prostectomy and lymph node dissection, the cancer had spread into one of the lymph nodes. We are just awaiting a scan to confirm it hasn't spread further and then it will be 6 months hormone therapy with a 6 month course of radiotherapy in that time period. Reading a lot of comments, this does seem to work well and the fact you have already had it confirmed that it hasn't spread is really positive. Nice to see you seeking advice and help on here. Wishing you all the very best with this and becoming a Dad :) x

User
Posted 01 Oct 2021 at 16:59

Hi J

My husband was recently diagnosed PSA 8.3, Gleason 4+3=7, T3a N1 M0 (although original diagnosis was M1b before we got second opinion)

He did start on hormones because we thought it had spread to the bones, so had bicalutamide for 4 weeks and has had 1 prostap 3 injection. I think the preferred route for onco/uro at this stage would be RT but my OH has opted to have surgery as he just wants to get the bulk out and they will be taking the affected nodes also. It’s extremely likely he will need ART afterwards but that’s the decision he has made. He is quite a bit older than you, he’s extreme lot fit and healthy for his age so just hoping his recovery will go well.

It’s such a difficult decision to decide what is best but you definitely feel better when the decision is made either way.

Best of luck with everything 

Also…We are looking at this as a curative treatment plan as the uro said this to be the case. It’s completely normal to panic, we’re still in that stage some days but most days now are much better having got our heads around things.

Edited by member 01 Oct 2021 at 17:05  | Reason: Extra info

User
Posted 01 Oct 2021 at 19:23
Thanks a lot guys for the speedy replies - really appreciated. Doctors here in HK are very good technically but empathy isn't exactly a strong point, so my Urologist literally spent 10-15 minutes giving me the news then shooed me out of his office giving me some names of Oncologists to contact (!).

So sorry to hear that some of you went through surgery and then also needed RT.. Looking back, would you have preferred to skip RP and go straight to RT or as you say is it better to remove the whole prostate anyway ? I think 12 of 14 cores came back positive in my case (almost all Gleason 3) but I do have one big lesion with GL4 which is starting to escape the capsule which I am sure is the culprit for my cancer spreading to lymph nodes..

My urologist said there's no point in removing my prostate given this diagnosis and radiotherapy would be my next step.

Has anyone had SBRT to treat cancer that has spread to Lymph nodes, etc ? I would love to get a shorter course of treatment if possible as work here is pretty hectic and I'd like to stay as active as possible. Currently feeling great of course, playing sports multiple times a week which makes the diagnosis all the more harder to believe, but I'm sure I'm not alone in this regard... For those that have had RT, how much did it take out of you and how are you feeling physically after treatment ?

Thanks again, and hope everyone is having a decent weekend at least :)

- Jonathan

User
Posted 01 Oct 2021 at 23:04
I don't want to cause any distress but I think you should prepare yourself emotionally for the oncologist saying that you are incurable. That is significant lymph node involvement - they may be able to offer radiotherapy to a wider area of the pelvis to capture a couple of lymph nodes but I will be surprised if they can get all three. There is also a chance that even if they can zap the three identified nodes, it will pop up elsewhere - cancer in the upper iliac nodes is usually considered to be metastatic.

There is little point having your prostate removed now - all you will achieve is a) unpleasant side effects when you will be wanting to help your wife with a new baby and b) delaying radiotherapy (if that is what the onco does offer).

If you were in the UK, the most up to date hospitals would probably be offering you hormone treatment combined with enzalutimide, docetaxel or apalutimide and then possibly radiotherapy in 3-6 months.

Also worth pointing out that the cancer doesn't escape from the prostate (T3) and then jump to the lymph nodes (N1); it doesn't work like that. The T3 means that the cancer has escaped the gland and is invading surrounding tissue ... like a bad orange will start to go mouldy and then black on the outside of the peel. Positive lymph nodes are because the cancer is moving through the lymphatic system - the rotten juice from the orange has dripped onto a bunch of grapes nearby.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2021 at 01:57

Thanks Lyn.. appreciated, will keep you posted as to how I get on.. 

User
Posted 02 Oct 2021 at 12:43

So I’m not going to pretend to know where your affected lymph nodes are as I don’t, and I can see Lyn has great knowledge and experience of this disease so can advise you so much better. Therefore maybe it’s not as simple as this but can the nodes not be removed? 

I get that it must be in your lymphatic system but we’re definitely taking the chance that removing them might just do the trick. We know it is so likely that ART will follow and will get ready for that.

My grandmother at 80 had breast cancer, she had a mastectomy and they took 3 of her nodes under her arm (just in case) and it turned out 2 of the 3 had cancer. She had no further treatment and is now 94 and had no other problems with it so far.

I know her story isn’t going to be the same for everyone but we’re certainly living in hope and being positive that it could be the same for us.

I was looking through one of the other posts recently and someone (thanks to whoever this was) posted a video link to a pc seminar with a doctor…he was talking about oligometastasis and how opportunities to potentially cure were being missed even if it has spread. (Definitely worth a look) I do sometimes feel like I’m clutching at straws but I want to believe and be positive that we can overcome this and that’s what gets me through.

We’re never going to know if we’ve made the correct decision about opting for surgery but I do know we have gone with our gut and we’ll have done everything we possibly could to try and make a difference, so therefore we can’t have any regrets. 

My husband as I said is older than you and has retired so the worries of work etc and recovery time are not the same, so I know this can make a difference.

You obviously have so much to be positive about having a new baby on the way. I really wish you well with whatever you decide.

Edited by member 02 Oct 2021 at 12:54  | Reason: Spacing

User
Posted 02 Oct 2021 at 12:56

Sorry forgot I couldn’t mention doctors names!! If you want to see the video though I will try and find the link 

 
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