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Second Biochemical Recurrence After Radical Prostatectomy and Salvage Radiation—NEED ADVICE

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User
Posted 25 Oct 2019 at 19:14

Hi everyone, 

I know this is a UK organization and I'm from the United States, so I hope it's OK that I post here-- this is one of the best forums I can find.

My Dad has just been diagnosed with his second biochemical recurrence of prostate cancer. He was originally diagnosed with PC in 2011 at the age of 57 and he had a radical prostatectomy. His PSA began to creep back up in 2016 and he was treated with salvage radiation (I’m unsure of how many treatments) and one hormone shot (I’m unsure of which one). The salvage therapy brought his PSA back down to 0.062 and we were good to go.

His PSA began to creep up again in April of this year, but I’m not sure what the number was then. He chose to keep a watchful eye on it, but by October of this year, his PSA had dramatically shot up to 20. They tested it twice to make sure it wasn’t a false reading and, a week after, it was at 22. CT and PET scans showed that he has two enlarged pelvic lymph nodes, which is probably cancer, but it is thankfully not in his bones.

I am extremely unhappy with his current urologist as they are making us wait FIVE WEEKS for an appointment and they would not tell him anything regarding his prognosis, whether he could ever potentially go into remission again or if the cancer was aggressive (which we all assume it is due to his PSA count and the PSA velocity). I’ve made him an appointment at Vanderbilt Medical Center in Nashville for a second opinion, a couple weeks after his first appointment with his current urologist.

Dad is my favorite person in the entire world and I am NOT ready for him to go yet. I’m posting because I want to aggressively fight this and I’m seeking advice, guidance, links to resources you like and/or stories from those who have been in similar situations as my Dad’s. I know we won’t get all the answers until we hear more from the docs, but I’m going out of my mind with worry since they decided to leave us totally in the dark, so researching and posting about it makes me feel useful. Here are some things on my mind that I’d love to start a discussion about:

  • Has anyone ever had/know of someone who has had a salvage lymph node dissection/removal after radical prostatectomy and what was the outcome?

  • If removing the lymph nodes is possible (and I’ve found several studies that say it is and that it’s potentially beneficial), does Dad’s PSA of 20 make him ineligible for such a surgery?

  • With a PSA of 20, but only two enlarged lymph nodes, does that mean there’s lots of cancer floating around elsewhere in his body and we just can’t see it yet?

  • Does his high PSA velocity and PSA doubling time mean that it’s super aggressive?

  • Has anyone else had a similar journey as Dad? How long have you been living with advanced PC? What is your quality of life like?

  • Any patients or caretakers in similar situations who wish they had opted for a different kind of treatment or path than what they did?

  • I want him to have the cancer genetically tested so that it can be treated individually and not with standard of care—anyone done this?

  • Particular website or blog you keep up with?

  • Give me ANY and ALL advice you have—I’m not interested in sugar coating. I want to know the truth so that I know what next best steps to take.

  • Any websites or blogs that you keep up with that post about the latest in PC research and treatments?

I know he’s got a really, really tough battle ahead of him and I’m not ignorant of the fact that his particular situation is pretty grim. But, I have found links for a few websites where it actually says that PC that has spread to the lymph nodes, but NOT the bones is still potentially “curable”, or at least possible for him to go into remission. Here is one such link: https://pcri.org/insights-blog/2019/5/20/video-prostate-cancer-recurrence-in-pelvic-lymph-nodes-high-indigo-stage

In the third paragraph, it states, “So this may be the last chance to actually cure the disease.”

Dad is currently 65 and in wonderful health aside from the cancer. He’s a farmer and is always on his feet getting lots of exercise and he eats pretty well. I’d love to start ANY kind of discussion about this and would love to hear feedback from any and every one.

Thanks so much!

Edited by moderator 13 Jul 2023 at 06:41  | Reason: Not specified

User
Posted 25 Oct 2019 at 21:22
Once it is in the lymphatic system, there is no point removing one or two nodes, and lymph node removal has its own problems including much increased risk of oedema. Full remission is not going to be achievable if he has already had the maximum dose of RT to the pelvic area.

They will probably explain that long term hormone therapy is the next step, possibly with chemo. He could ask about HIFU or cryotherapy to the known nodes but I suspect that it wouldn't slow down the cancer progression as well as hormone suppression will. Generally speaking, he is unlikely to find it a huge battle, it will just be a case of getting used to the effect of the hormones.

It is hard to tell whether dad's PSA velocity is high or not without knowing the readings prior to the 20 but the PSA velocity doesn't indicate aggressiveness, it indicates a level of active-ness. If you can find his original paperwork, particularly his pathology report from after the surgery, his Gleason grade should be recorded there.

We have men here who have lived 10, 12, 14 years on hormone therapy so there is no reason to assume that dad is going anywhere soon. The main indicator of problems ahead would be if his first HT fails quickly.

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

User
Posted 25 Oct 2019 at 23:17

Welcome to this forum although sorry for the reason that brings you here.

I can't recall anybody posting on here that they had had a lymph node removed after RP/RT but if someone has it would be interesting to know more about the experience and follow up. There is a Dr at Mayo who gave a lecture in which he illustrated in a video a number of cases and if I remember correctly he talks briefly on one case where a lymph node was subsequently removed. The lecture was about oligometastases where there are only a few cancer affected sites outside the Prostate. Since he made the video in 2014 in which he stresses the importance of the C11 Choline Pet scan, the 68 Gallium PSMA test is becoming the preferred option, otherwise I think what the innovative Dr says makes a lot of sense. https://www.youtube.com/watch?v=NkqizmvqJPo

I believe that in the UK in the circumstances It would be more likely that an isolated lymph node or two would be treated by further radiation depending on the extent to which the affected nodes had received previous radiation when the pelvis was irradiated. Other treatment could be systemic .

Unfortunately, I don't think it's possible to answer some of your questions and even with all the more detailed information your Dad's Consultant has, a definitive  answer may not be possible because the way PCa develops and spreads can be unpredictable and different Consultants may tackle it in different ways, sometimes because patients want alternative options where possible. So as the Dr in your posted video says, not all men will benefit from a procedure (and that really goes for any procedure).

There is a much larger forum than this of which I am a member and more detailed patient accounts are given and in which doctors names can be given (unlike this forum). The majority of members are American so information is greater on PCa as affects Americans and largely in the USA. This is https://www.inspire.com/groups/us-too-prostate-cancer/

 

Edited by member 26 Oct 2019 at 09:25  | Reason: Not specified

Barry
User
Posted 26 Oct 2019 at 02:52

Where a small number of lymph nodes are glowing on the scan after RT with biochemical recurrence, this is sometimes treated with stereotactic radiotherapy (such as cyberknife). I don't know the details, but I suspect they would treat neighbouring lymph nodes too. Radiotherapy can leave lymph nodes working enough to avoid lymphodema, whereas removal obviously doesn't and is more likely to cause lymphodema.

Another possibility might be proton beam, but I'm not aware if that's been done in this case.

I would be concerned about the wait in this case, and would want to be straight back on hormone therapy, to stop further spread.

Edited by member 26 Oct 2019 at 03:06  | Reason: Not specified

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User
Posted 25 Oct 2019 at 21:22
Once it is in the lymphatic system, there is no point removing one or two nodes, and lymph node removal has its own problems including much increased risk of oedema. Full remission is not going to be achievable if he has already had the maximum dose of RT to the pelvic area.

They will probably explain that long term hormone therapy is the next step, possibly with chemo. He could ask about HIFU or cryotherapy to the known nodes but I suspect that it wouldn't slow down the cancer progression as well as hormone suppression will. Generally speaking, he is unlikely to find it a huge battle, it will just be a case of getting used to the effect of the hormones.

It is hard to tell whether dad's PSA velocity is high or not without knowing the readings prior to the 20 but the PSA velocity doesn't indicate aggressiveness, it indicates a level of active-ness. If you can find his original paperwork, particularly his pathology report from after the surgery, his Gleason grade should be recorded there.

We have men here who have lived 10, 12, 14 years on hormone therapy so there is no reason to assume that dad is going anywhere soon. The main indicator of problems ahead would be if his first HT fails quickly.

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

User
Posted 25 Oct 2019 at 23:17

Welcome to this forum although sorry for the reason that brings you here.

I can't recall anybody posting on here that they had had a lymph node removed after RP/RT but if someone has it would be interesting to know more about the experience and follow up. There is a Dr at Mayo who gave a lecture in which he illustrated in a video a number of cases and if I remember correctly he talks briefly on one case where a lymph node was subsequently removed. The lecture was about oligometastases where there are only a few cancer affected sites outside the Prostate. Since he made the video in 2014 in which he stresses the importance of the C11 Choline Pet scan, the 68 Gallium PSMA test is becoming the preferred option, otherwise I think what the innovative Dr says makes a lot of sense. https://www.youtube.com/watch?v=NkqizmvqJPo

I believe that in the UK in the circumstances It would be more likely that an isolated lymph node or two would be treated by further radiation depending on the extent to which the affected nodes had received previous radiation when the pelvis was irradiated. Other treatment could be systemic .

Unfortunately, I don't think it's possible to answer some of your questions and even with all the more detailed information your Dad's Consultant has, a definitive  answer may not be possible because the way PCa develops and spreads can be unpredictable and different Consultants may tackle it in different ways, sometimes because patients want alternative options where possible. So as the Dr in your posted video says, not all men will benefit from a procedure (and that really goes for any procedure).

There is a much larger forum than this of which I am a member and more detailed patient accounts are given and in which doctors names can be given (unlike this forum). The majority of members are American so information is greater on PCa as affects Americans and largely in the USA. This is https://www.inspire.com/groups/us-too-prostate-cancer/

 

Edited by member 26 Oct 2019 at 09:25  | Reason: Not specified

Barry
User
Posted 26 Oct 2019 at 02:52

Where a small number of lymph nodes are glowing on the scan after RT with biochemical recurrence, this is sometimes treated with stereotactic radiotherapy (such as cyberknife). I don't know the details, but I suspect they would treat neighbouring lymph nodes too. Radiotherapy can leave lymph nodes working enough to avoid lymphodema, whereas removal obviously doesn't and is more likely to cause lymphodema.

Another possibility might be proton beam, but I'm not aware if that's been done in this case.

I would be concerned about the wait in this case, and would want to be straight back on hormone therapy, to stop further spread.

Edited by member 26 Oct 2019 at 03:06  | Reason: Not specified

User
Posted 29 Oct 2019 at 18:34

Thank you all SO MUCH for responding.  I can't tell you how helpful your input is and how much better it makes me feel (not that it's all about me) knowing there are others out there who understand what's going on. 

@LynEyre, Big risk of oedema makes perfect sense as to why they wouldn’t remove the nodes—I just hadn’t found any explanation in any of the research I’ve done. I’m hoping that he didn’t have the max dose of RT, but we’re not sure yet. We do know that it was only done on the prostate bed, but not sure if that would still make him eligible for RT to the nodes or not? And sorry to be so vague about his April PSA—I don’t know the exact number, but it was definitely under a 1. So good to know that it doesn’t indicate aggressiveness. His Gleason scores from 2011 were 3+3=6 in right prostate gland and 3+4=7 in left prostate gland, but I’m not entirely sure how to interpret those. 

@Old Barry, these links are so helpful, thank you! I had not previously read about oligometastases and am looking into it. This video is so interesting. I'm also looking into the forum link you sent. I found a number of sites on salvage lymph node dissection, but it just seems like that procedure is so rarely done (for reasons LynEyre talks about in her post probably) and I couldn't understand why. Here are the articles I read about it if you're interested: https://www.europeanurology.com/article/S0302-2838(18)30836-4/fulltext https://www.ncbi.nlm.nih.gov/pubmed/24571959 https://www.ncbi.nlm.nih.gov/pubmed/30301694

@Andy62, I'd read just a little about CyberKnife, but will definitely be reading up on it, thank you for that input. I'm keeping my fingers crossed that maybe his lymph nodes weren't hit with the first round of RT he had in 2016 and that they can zap them this time around and knock this stuff out. Wishful thinking/hoping, I know. I was so mad about the long wait and have called and gotten his appointment time with the original urologist bumped up to this Monday (Nov. 4) and his Vanderbilt appointment will be Nov. 13. I'd LOVE to get back on here later next month and be able to tell you all that all this panic was for nothing and he is going to be just fine! 

Thank you all again, I'm so grateful! 

 

User
Posted 30 Oct 2019 at 13:23

Feel your pain and completely understand the fear and worry.  We are only 13 months in with my husband and his situation is much worse.  But I have done a lot of research over the last year and there is a lot of good success long term with HT and chemo if it is not in bones.  This may be why your Dad's case is not seen as extremely urgent.  We are at Mayo and got in right away, only because of the severity of my husband's diagnosis.  

I am in Minnesota, and this forum is excellent, people here are so helpful.  Be sure to start following the Prostate Cancer Foundation, a lot of very good information.  They are getting great funding and helping to bring more research and treatment for this disease that so many men now get.  https://www.pcf.org/

I think you can be optimistic for your Dad!

Saint Paul

 
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