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User
Posted 25 Mar 2023 at 16:48

Claret,thanks for the info.I see my oncologist again on Thursday,so will hopefully discuss options. 

Thanks Chris 

User
Posted 30 Mar 2023 at 16:17
Chris, just let me tell you st: my husband is coping with HT pretty well. Although he's a professional complainer, he only moans about occasional tiredness and some awakenings along the night. Shouldn't you reconsider going for it, if offered?

Best,

Lola

User
Posted 30 Mar 2023 at 17:02

Lola, thanks for the reply and your experience it is appreciated. I think all of us would prefer a curative pathway rather than a controlling pathway. I do sway between I am not having HT and I don't want HT. So far in my discussions with the onco I have said I don't want HT, but never point blank refused it. 

Seeing him in the next couple of hours.

Thanks Chris 

 

User
Posted 31 Mar 2023 at 23:18
What did he say?
User
Posted 31 Mar 2023 at 23:25
I'm also expecting some news from Chris. 🤞
User
Posted 01 Apr 2023 at 00:25

Sorry guys, pretty much as expected another PSMA scan in a couple of weeks. We have switched to using our medical insurance, the wait for the scan at our hospital is now around 4  months. The scan will be at the genesis centre in Oxford which I believe will be use the gallium 68 tracer. Will keep you updated as and when.

No explanation for why the PSA is rising faster than at an other time other than it sometimes happens. I asked about including the troublesome knee ,but was told that was down to the radiographer. Onco said he had only seen spread to the knee on three occasions, I did say I could be number 4.

Thanks Chris 

User
Posted 01 Apr 2023 at 00:44
Thanks for your update, Chris.

I guess the PSMA will show whatever is causing that PSA rise and and they'll give you a tailored treatment. Thankfully, many are available these days.

Stay calm🤗

User
Posted 01 Apr 2023 at 07:51
When I had my PSMA PET with the GA infusion, it was "whole body" With extra scanning in the pelvis.

Seems strange your ONCO won't specify an investigation on your knee explicitly. Sometimes I think they focus on "likelihood" and forget about their patients peace on mind!

The infusion will go everywhere regardless, they might as well take the picture while they are there!

User
Posted 01 Apr 2023 at 09:18

4 months seems a long wait.  I was told by my nurse it was much less.  Good luck at the Genesis Centre.

User
Posted 01 Apr 2023 at 10:20

Originally Posted by: Online Community Member

4 months seems a long wait.  I was told by my nurse it was much less.  Good luck at the Genesis Centre.

I think it is a local issue with our hospital scanning facility. 

I do see there are alot of guys now having PSMA scans at the diagnosis stage, so I assume there is added pressure on the facilities. It does means a 220 mile round trip ☹️.

Thanks Chris 

 

Franci , I  agree with the peace of mind bit. 

Lola , thanks, I am probably too calm 😀.

Edited by member 01 Apr 2023 at 10:21  | Reason: Brain fog

User
Posted 24 Apr 2023 at 23:05

I had my PSMA scan this afternoon and see the oncologist on Thursday, although the report will be ready tomorrow morning. 

Did anyone have kidney pain after having the gallium tracer, I have been drinking plenty of water and my kidneys are not in the best of condition.it is just painful when moving.

Franci, after a very brief discussion with the scan man he agreed to include the knees.

Thanks Chris 

 

User
Posted 25 Apr 2023 at 05:56

Wishing you all the best for your results Chris

Cheers

Bill

User
Posted 25 Apr 2023 at 13:32
Fingers crossed for you Chris...
User
Posted 25 Apr 2023 at 13:33
Fingers crossed for you Chris...
User
Posted 25 Apr 2023 at 17:42

Fingers crossed for you. I’ve had a Gallium tracer a couple of times, no issues kidney wise.

Ido4

User
Posted 28 Apr 2023 at 07:05

Nine years ago today I was having surgery to remove my cancerous prostate. Around five years ago I was having salvage RT to my prostate bed. 8 months ago I had a lymph node treated with more radiation treatment.

 

Yesterday I was told there is still something in the lymph node treated last year and there is a new tumor in another lymph node in the pelvic abdominal area. Nothing showing in the troublesome knee.

 

The oncologist is to have a meeting with the radiology team to discuss options, the new tumor may be treatable. There is possibly a risk bowel or blood vessel damage by retreating the previously treated tumor and if the risk is considered too great they would not do it. He did point out that is thier choice not mine. It may be that they treat the new tumor and see what happens to the existing tumor.

 

Not sure how I feel at the moment, less optimistic of getting a cureable treatment. Plus the treatment would be carried out 110 miles away from home with 4 to 6 visits.

 

Thanks Chris 

User
Posted 28 Apr 2023 at 09:28

Not the best news, Chris. I'm so sorry to read that. There's a difference between the terms "treatable" and "cureable" and, emotionally, it's not easy to move from "cureable" to "treatable", but at least, it's confined to the pelvis area and many ways to deal with this f****  desease are available these days. I hope everything goes ok and you can cope with it.

 

User
Posted 28 Apr 2023 at 11:38

Sorry to hear that Chris. I do hope they find a way to keep you on the curable pathway. At least the decision is taken out of your hands and you are not presented with a dilemma.

User
Posted 28 Apr 2023 at 12:01
Sorry to hear this news Chris. I guess you have to go with their judgement.
User
Posted 28 Apr 2023 at 12:33

Sorry to read this, any point in having a second opinion ? Might give another perspective.

This disease tests our strength, and resilience doesn’t it. 

Take care.

User
Posted 28 Apr 2023 at 18:59

Hi Colwick Chris,

I'm so very sorry to hear your news.  I reallly hope they can sort it.  What a roller-coaster ride you have had over the years.  Keep us all posted.

Take good care of yourself.

JedSee.

User
Posted 28 Apr 2023 at 19:01

Lola , Chris B, CJ,  Leila and Jedsee, thanks for your replies. The meeting yesterday was a bit sobering to say the least.

I just need to get my head back on track.

Thanks Chris 

 

Edited by member 28 Apr 2023 at 19:04  | Reason: Post crossed

User
Posted 29 Apr 2023 at 16:06
Hi Chris

You got through all the previous s*** thrown at you, I'm sure you'll get your "head back on track"

It seems you have no decision to make, unless of course you get a second opinion.

Best of luck

Cheers

Bill

User
Posted 29 Apr 2023 at 20:45

Bill63 thanks for the reply,just to elaborate on the onco meeting. The tumor found and treated last year is still lighting up the PSMA scan. When asked about the possibility of retreating it the reply was along the lines of , it was difficult to treat it in the first place and retreating it runs the risk of putting a hole in the bowel or a hole in a blood vessel,that could result in major emergency surgery and people do die in those situations.  So the decision on retreating in not in my hands. The choice of other options,such as treat the new tumor or go for HT or other yet to be suggested treatments still lies with me.

I have another meeting with the onco within a couple of weeks to see what the experts think.

Thanks Chris 

 

User
Posted 29 Apr 2023 at 21:33

Hi Chris,  There is a video on YouTube where the oncologist says the risk of burning the intestine with modern equipment is very low.  He does emphasise in the hands of a good operator and he probably wasn't talking about retreating an area.  Perhaps it's something worth looking into although I can understand you not wanting to take the risk.  Peter

User
Posted 29 Apr 2023 at 23:14

Sorry to read this Chris. 

Ido4

User
Posted 29 Apr 2023 at 23:26
Is surgical removal out of the question too? Did he explain why it hadn't treated the lymph node successfully? Was it the difficulty of getting the ray gun passed your other parts?

As it lights up so we'll with PSMA is there no option for a leuticium trial??

User
Posted 30 Apr 2023 at 00:18

Peter, it was the onco who does not want to take the risk, hence his comment "that's our choice to make not yours."

Franci, don't know about surgery being an option, is an irradiated lymph node as challenging as and irradiated prostate, I don't know. I did ask the question of why my PSA was rising and he said it happens. There may be ways around it but I don't meet the criteria for leuticeum, not had HT.

Ido , thanks, my brain is regrouping, almost back to not worrying about things I can't control. Big concern at the moment is taping and filling my daughter's utility room ceiling 😁.

Thanks Chris 

 

User
Posted 02 May 2023 at 00:51
Ah, so sorry to see this CC. The trouble is, if you go for local treatment on the new node, more are just going to pop up somewhere else at some point. I think if you were my OH, I would want you to start systemic treatment now before any more spots have the chance to develop. Good news on the knee though - time to see a physio?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 May 2023 at 20:22

Lyn, thanks for your reply, I did have physio on the knee but it didn't help ,a steroid injection helped for a few weeks.

Thanks for your thoughts, they are appreciated, certainly a subject to bring up with J. 

Perhaps I am chasing a pipe dream and not ready to give up just yet. 

 

Thanks Chris 

User
Posted 02 May 2023 at 20:51
That's the thing, isn't it? Is starting HT giving up or is starting HT giving yourself the best chance of being here in many years' time? TopGun started HT when it was clear that systemic treatment was needed, he used IHT successfully and lived another 14 years. Barry has travelled overseas and mixed his hospital usage in the UK to get the best focal treatments he can at each stage. We have others who have been incurable for 15 / 18 and now touching 20 years - different approaches but almost all have reached a point where they accepted HT was needed to stop the bloody thing in its tracks. I don't think anyone has lived 20 years by just hoping for the best. Good use of IHT may be tolerable? I am certain that you will come up with a plan that is acceptable to you and the medical team x

Potential knee replacement on the cards?

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

User
Posted 02 May 2023 at 21:25

Thanks Lyn, certainly food for thought. 

I don't think the knee is ready for replacement just yet.

Thanks Chris 

 

User
Posted 03 May 2023 at 10:16
If you have the option of local treatment (surgery, RT, etc) perhaps consider that with hormone therapy for 18 months too IE one last go at a long lasting remission.

Just conscious your cancer hasn't had a sniff of HT to date and combined with another focal treatment (Which has been shown to activate the bodies own immune response) may be enough to get you to 90??

User
Posted 04 May 2023 at 21:02

Another meeting with the oncologist today, following the MDT meeting the suggestion is treat the new tumor with SABR treatment, leave the previously treated tumor alone for the moment, 1, because it is going to be extremely difficult to treat. 2, because they don't normally redo a PSMA scan so soon after treatment and they want to see what happens to it.

Six months of bicalutamide tablets. Can't say I am happy about that, but he used a phase someone else used, if you were my relative that is what I would recommend. 

The treatment will now be done locally, the oh is disappointed, she had almost booked the caravan site and two weeks holiday.

Franci, the body is worn out now , I don't think it would last another 19 years.

Thanks Chris 

 

User
Posted 05 May 2023 at 06:05
Sounds like a plan Chris.. Get your knee done while you are at it, my hip replacement has been life changing.
User
Posted 05 May 2023 at 19:05

It’s good there is a plan now Chris but I’m with you on not being excited about 6 months of bicalutamide and that this is difficult to deal with. Sending best wishes to you and yours. 

Ido4

User
Posted 05 May 2023 at 21:12

Hi Chris,

I wish you the very best of luck with your treatment.  Sorry that the holiday plans have ben disrupted.

Take good care of yourself.

JedSee.

User
Posted 25 May 2023 at 21:32

Guys , what is the long term benefit of being on bicalutamide for six months. If the SABR treatment works on the tumor what is the point of the bicalutamide. If we can't retreat the tumor treated last year surely the cancer will start to grow after the bicalutamide stops working. My oncologist doesn't seem to want to engage in conversations about treatments. I have told him through his secretary that I wish to decline the option of bicalutamide and I will start my SABR treatment in ten days time.

The oncologist will not do another PSA test before treatment. I spoke to my GP this morning and after a long discussion he agreed to give me a Blood test form. I finished up having to use the mental well being card  Yet again I had to correct him that a PSA of 3.6 was not low for a man without a prostate, he did say , sorry I thought you had just has RT, not sure I would say 3.6 was that low after RT.

Are we entitled to have PSA tests even if we are not having active treatment for example being between treatments. Bearing in mind my PSA is rising faster than it ever has ,I just like to know where I am going.Talking to the GP this morning he said man boobs , fatigue and possible kidney damage were all very rare and reversible once the bicalutamide stopped.Any thoughts.

 

Thanks Chris 

 

 

 

 

Edited by member 25 May 2023 at 21:33  | Reason: Typo

User
Posted 26 May 2023 at 06:59
Chris they put you on it prior to treatment to calm the cancer down and contain it at the size they have seen to make targeting better. You stay on it after as the treatment will annoy it and you may get flare. So it’s to to keep T away from an already angry tumour. I was fine on Bical for 11 months. No moobs or soreness although many men report it. Fatigue for a couple of weeks. Best wishes
User
Posted 26 May 2023 at 21:06

Chris. I didn't find the six months Bical too bad. The gynecomastia was the only side effect of consequence. I wish I had been put on Tamoxifen from the start. Three months after finishing the bical the moobs are still here but the tenderness has thankfully gone. Most body hair disappeared and that has not yet put in a reappearance. Six months passes fairly quickly in the wider scheme of things. I wish you good luck with the SABR. Chris

User
Posted 26 May 2023 at 22:13

Thanks guys,

Chris J, from your avatars you look quite fit and slim , the theory is guys with a big belly grow man boobs.I have a big belly.

Chris B onco has said tamoxifen does more harm than the benefit it provides ,got a point blank no chance.Do you have a large belly.

I have been to an in-laws funeral today 55 year old woman who has been fighting motor neurone disease for 7 years,then got blood cancer,she finished up not being able to eat or talk and suffered for the last two years. Certainly focuses the mind and brings things into perspective.

Thanks Chris 

Edited by member 26 May 2023 at 22:42  | Reason: Not specified

User
Posted 26 May 2023 at 22:45

Hello Chris, the onco's reaction regarding Tamoxifen is disappointing. Tamoxifen does increase risk of DVT, so not normally allowed if you've had a DVT before or at high risk, or coronary artery disease. It does cause non-alcoholic fatty liver disease in about 20% of the women who take it for 5 years to reduce risk of breast cancer recurrence, but that's at 20mg/day, which is a higher dose than is needed to prevent gynecomastia/mastodynia while on anti-androgens (such as Bicalutamide), and liver problems are easily checked with a liver function test in any case, so that issue can be picked up before it becomes a problem.

Moobs is usually more associated with increased breast fat tissue, which is different from gynecomastia (which is breast gland growth). The hormone therapy injections are more likely to cause increased breast fat tissue. It's less likely to happen with anti-androgens, but does happen sometimes. Tamoxifen won't do anything to prevent increased breast fat tissue.

User
Posted 26 May 2023 at 22:58

My understanding, based on members here over many years, is the opposite of Andy’s- breast growth is more common on bicalutimide than on hormone injections and is not always reversible. John got moobs on only 6 months of bical and they have stayed put. Very painful when the breast buds started growing and remained sensitive for quite a few months after he stopped the tablets. Fortunately, he had decent pecs so the moobs are not noticeable enough to upset him.

I don’t know why so many doctors and consultants play down the side effects of HT. 

Our NHS trust will not provide tamoxifen or RT to the breast buds. 

Edited by member 26 May 2023 at 23:01  | Reason: Not specified

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

User
Posted 27 May 2023 at 00:31

It's important to understand the two types of breast growth:

Gynecomastia (breast gland growth), often with mastodynia (painful nipple sensitivity). This is caused by the ratio of Testosterone to Estrogens changing. Bicalutamide pushes up Testosterone level but prevents androgen receptors from being able to see/use it, so breast gland tissue thinks there's little/no Testosterone. On the other hand, Estrogens in men are manufactured from Testosterone, and the higher level of Testosterone causes a higher level of Estrogens. So breast glands see very little Testosterone and more Estrogens, which is their signal to grow. Tamoxifen is a selective anti-estrogen, and blocks some of the body's estrogen receptors, notably in breast tissue. (It does not block estrogen receptors in bone, so doesn't contribute to osteoporosis.)

The other type is breast fat growth (sometimes called pseudogynecomastia). This is caused by the loss of Testosterone, and the body laying down fat in a more female form. Breast fat growth does not cause mastodynia. Tamoxifen has no effect on breast fat.

Both types of hormone therapy can cause both types of breast growth. Bicalutamide is particularly well known for causing gynecomastia and mastodynia, typically from around 2 months on the medication (so it's not a problem for the 28 day anti-flare dose). You can feel your breasts to detect if there's any breast gland tissue there (firmer), or just breast fat.

User
Posted 27 May 2023 at 06:24

Chris Bicalutimide is clinically proven to reduce prostate cancer specific death and distant metastasis in recurrent PC:

https://www.cancer.gov/news-events/cancer-currents-blog/2017/androgen-deprivation-therapy-prostate#:~:text=The%20overall%20survival%20rate%20among,group%E2%80%94a%20statistically%20significant%20difference.

The study doesn't explain how it works but is conclusive that it does (50% less PC Death at 12 years).

It also confirmed breast growth in 70% of cases - your GP sounds like he needs to read more.This is easily stopped with blast of radiation to the nips.

Interesting you mentioned your belly, being brutal here but getting rid of that is probably the best single thing you could do to improve QOL and PC outcomes.

 

 

Edited by member 27 May 2023 at 06:25  | Reason: Not specified

User
Posted 27 May 2023 at 08:16

Andy,Lyn,Franci,

Thanks for the valuable information, I am now leaning towards taking the bicalutamide. It is on order and providing I don't change my mind again I will start taking it on the same day as the SABR starts next Wednesday.

Interesting comments about the GP, our practice seems a little lacking on PCa knowledge.

Shifting the gut would be ideal but the aches and pains make it difficult for me to get motivated. My diet is probably not great but I have cut down on the sweet stuff. I am still working on my daughter's house but after a six hour stint I am totally knackered and usually in pain. I do see the physio on Wednesday to see about some of the issues. 

Thanks again Chris

Edited by member 27 May 2023 at 09:56  | Reason: Not specified

User
Posted 27 May 2023 at 20:54
Tumeric helps me I am sure, just not as much as the hip replacement did!

I may go on about this but a combo of no breakfast (16/8 fasting) and avoiding bread and potatoes has worked wonders for me. More than 2 inches off my waist and 10kgs lighter. 2 years later it's still off and I have lost the sweet cravings.

User
Posted 27 May 2023 at 20:55
Tumeric helps me I am sure, just not as much as the hip replacement did!

I may go on about this but a combo of no breakfast (16/8 fasting) and avoiding bread and potatoes has worked wonders for me. More than 2 inches off my waist and 10kgs lighter. 2 years later it's still off and I have lost the sweet cravings.

User
Posted 27 May 2023 at 21:58

Franci,thanks for the info. I suffer from a low blood sugar problem and if I don't have breakfast when it gets to  around 11.00am I cannot function. I am supposedly borderline diabetic, but not fully there yet.

Thanks Chris 

 

User
Posted 27 May 2023 at 23:50

Tumeric, apple cider vinegar, ginger and manuka honey help with joint pain. 
I’ve noticed some improvement, over the las5 few moths. I also use my rowing machine and do some weights, I have some significant arthritis in hips  and back, this really helps. 

Hope this helps lads.

Leila 

 
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