Dilemma Stick or Twist?: Background is... - Advanced Prostate...

Advanced Prostate Cancer

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Dilemma Stick or Twist?

GreenStreet profile image
GreenStreet

Background is had RP and a positive margin. Had SRT to prostate bed only. PSA has gradually risen back to 0.11 over a couple of years. I had a Combidex Nano Scan at Nijmegen which identified 4 suspicious lymph nodes (iliaca externa left and one iliaca externa left (cranial). I have just had a telephone conversation with my oncologist at RMH in the UK after the MDT have examined the scans from the Netherlands. He told me that further radiation to my lymph nodes is high risk because of my anatomy which means that the lymph nodes are close to my bowl. He agrees that radiation with 2 years worth of hormone treatment is my last chance of a cure but it is not a great chance and he would put it at less than 50% more in the 20% region. He believes that they might end up only being able to give me 40 gray rather than 47 gray once they have done the radiotherapy planning which would reduce the chance of cure. Standard treatment would be 47 gray in 20 fractions. He is concerned at potential side effects for a small chance of curative treatment but they would go ahead if I wanted it. His advice would be to lean to not doing it. He actually would continue to monitor the PSA without moving to HT straight away. I said that I would think about it. I might need to get a second opinion. I am not sure where best to get a second opinion in the UK because the RMH is held in such high regard. I would be interested in members view of this plus my dilemma which is a difficult one and what other considerations or questions I should be asking. I did push him on how long he thought I had got without going for the cure option and although he fairly did not want to answer this he did say 10 years could be realistic. I felt I had a very honest conversation but I now face a difficult decision.

51 Replies

GreenStreet that is a tough decision. Wow it found stuff at a psa of 0.11? How suspicious?

On a scale of 1 to 5 where 1 is benign and 5 is malignant I had 4 nodes scored as a 4 which is suspicious. The phrase I was given is that if it looks like a duck quacks like a duck etc then it probably is a duck. Not 100% certain but the odds of 4 scored at 4 being ok would be low

In terms of your decision, I would get another opinion from another RO. You went to get that scan for a reason.

I understand your situation as it similar to mine. They are also trying for a "cure" on me though it is with 38 sessions and 87 grays. They are irradiating my prostate but also my lower abdominen lymph nodes. I feel horrible but I told my daughter that I would try anything to be with her longer so here I am. So it is no easy choice and it is yours to make. Wishing you the best of luck.

Thanks all the best of luck to you too.

You got a really excellent response from your doctor at RMH - showing once again why it deserves its international reputation. Are you fairly slender? My RO also told me that if I ever needed pelvic radiation I would have a problem because of my 31" waste. This is one time that guys with a lot of extra bodyfat around the middle have an advantage - the fat protects the bowels.

He is putting your safety first - what is the point of curing you if you wind up with permanent serious bowel damage that will make your life a living hell and probably result in an early death anyway? I also love that he is giving you options with risks attached to them, and his numbers seem pretty reasonable to me. I doubt you will get a better opinion anywhere.

I know none of your options are great. In the end, it's a very personal decision and it's yours to make - no one can decide for you. Please let me know if I can do anything to help you make it.

Mascouche profile image
Mascouche in reply to Tall_Allen

I've got a size 31" waist if not 30 and I have never been told this. I was told that there would be no lasting damage. What were you told would happen to you?

Tall_Allen profile image
Tall_Allen in reply to Mascouche

As I said, I was told by my RO that I probably would not be a good candidate for whole pelvic radiation because of bowel injury. Fortunately, it never came up. Maybe you had some other anatomic arrangement that helped you - we are all different. The RO won't know until he looks at the CT images.

Mascouche profile image
Mascouche in reply to Tall_Allen

I have had over 13 sessions thus far so I hope he checks soon.

Tall_Allen profile image
Tall_Allen in reply to Mascouche

He would have checked before your first session. ROs set dose constraints for the bowels. Any treatment plan that violates those dose constraints is discarded. They would not have proceeded unless they found a plan that would not injure your bowels.

Mascouche profile image
Mascouche in reply to Tall_Allen

That's reassuring though I trust you more than I trust my RO.

Tall_Allen profile image
Tall_Allen in reply to Mascouche

You don't have to trust him -- you can ask him these two questions:

1. What dose constraints did you use for my bowels?

2. What dose are my bowels getting? (He will show you a "Dose Volume Histogram" (DVH) that shows the volume of bowel that will get each dose.)

Patients never ask for this and it's probably the biggest part of what the RO does. He will probably be delighted that you took an interest. They are usually proud of their plans.

Mascouche profile image
Mascouche in reply to Tall_Allen

Thanks I will ask him.

spw1 profile image
spw1 in reply to Tall_Allen

Wish we had known to ask. My husband completed 5 sessions of SBRT last Friday. Since about Monday, radiation proctitis built up and has been horrific. RO first sent pain med. on Tuesday afternoon and emailed yesterday to say that some other script will be ready at the pharmacy this evening. No idea what that would be. My husband does not have much fat around the abdomen (or anywhere else), 31-32 inch waist for a 6'3" frame. The space oar option was asked for but the big hospital in Toronto does not have a trained RO to do that yet.

Tall_Allen profile image
Tall_Allen in reply to spw1

SpaceOAR doesn't help with acute proctitis anyway. It is usually transient.

Mascouche profile image
Mascouche in reply to spw1

My doctor in Quebec flat out refused space oar and said that it hasn't demonstrated good results to protect the anus.

I don't know if I have proctatis or not but it burns greatly when I urinate and my urethra itches all day long so they gave me Flowmax which I think has helped reduce the symptoms to a level that is more tolerable.

Best of luck to your husband.

spw1 profile image
spw1 in reply to Mascouche

Thank you. My husband is taking flomax as well. The rectal symptoms have required a prescription painkiller. I thought it was going comfortably enough throughout the treatment; only started to be really bad a couple of days after the last treatment. Good luck to you too. Let's hope these symptoms all go away soon.

Mascouche profile image
Mascouche in reply to Tall_Allen

My RO called me today to ask how I was doing. I did ask what dose constraints she used for my bowels. She seemed to be taken aback by the question. She says that radiation goes up to L1 and said that my prostate is getting 78Gy and my Lymph nodes are getting 46 Gy and that my bowels would be getting some because they are at that level but less than 46Gy.

I then asked if she could show me the Dose Volume Histogram and again she was surprised I asked but did not sound delighted at all from my interest. She says that she does not know if she can show this to me. She said "Don't worry about this. Trust me, you are in good hands."

Whenever I am being told not to worry without good explanations as to why I should not be worried, well that gets me worried. Maybe my RO team is good but they are definitely not forthcoming when I ask them any information.

Tall_Allen profile image
Tall_Allen in reply to Mascouche

Very hard to do on the phone. She can't show you a DVH over the phone - she has to show you on a computer, or at least with color images. Next time you see her in person, ask again. She will be able to tell that it is based on real interest on your part, and not to challenge her. ROs are usually very proud of the work they do.

Mascouche profile image
Mascouche in reply to Tall_Allen

Ok but aside of the weekly calls I am not expecting to to see her again, or maybe just after the treatments are over since she has not booked me any appointments. Even the weekly calls are not scheduled. She calls me on different days and times every week based on how busy she is.

TomTom1111 profile image
TomTom1111 in reply to Mascouche

I guess I was fortunate. I met with my RO every Tuesday. We reviewed the treatment and he asked how I was doing.I was fortunate to escape with little SEs except for fatigue

treedown profile image
treedown in reply to Mascouche

I met with my MO every Wed and a nurse was available everyday if I had questions, concerns, side effects. I was lucky not to have any but my RO showed me my DVH and was very proud of it as TA said. I guess every doc is different but I can't imagine a case where she would not be "allowed" to show you though I just noticed your in Canada and I am in the US so who knows.

Thanks TA. Yes I really respect the fact that I had a really honest conversation with him albeit difficult on the phone and no pressure to make an instant decision. Yes I am very skinny which probably does not help me here. Very little fat. I have some thinking to do but I have no doubt he is looking out for my best interests.

I also had both RP and SRT. My PSA has bounced around 0.050 and 0.100 for the past three years. I've had a number of "second opinions", and done a fair amount of research and readings.

I believe your physician and TA are both giving you excellent advise. Best of luck going forward.

In your shoes I would factored in the PSA doubling time. Longer PSADT provides some leeway for decision making and sparkles some extra probabilities for a "cure". To be totally honest with you I don't believe there is any real cure with cancer. There is only a shorter or longer progression stalling that bears a price tag in QoL tokens. Of course there is the opposite, kitchen sink, approach.

GreenStreet profile image
GreenStreet in reply to Justfor_

Interesting. My PSADT seems to be around 13 months not ultra fast at the moment but not ultra slow.

Justfor_ profile image
Justfor_ in reply to GreenStreet

I would surely have waited to see the 0.2 printed, but I am just an engineer that gives more credit to numbers than experts' opinions. Yet, I found your doctor's advice exceptionally good. He made my exceptional doctor list which was almost empty.

I would take any chance for a cure than be in the situation I am in now with an incurable disease. I got whole pelvis radiation in 2005 but it was not really "whole pelvis" since they did not irradiate some lymph nodes to protect the rectum. Your advantage is that lymph nodes with lesions of 2 mm or larger were identified with the Combidex scan. When I had the radiation all the pelvic lymph nodes were "normal" in a CT scan.

GreenStreet profile image
GreenStreet in reply to tango65

A real dilemma and thanks for your views. I think the issue is that the problem has been located but I am being told that the location is difficult to treat with my anatomy without causing me bowel damage. I have some degree of bowel urgency (which I have been able to manage) post SRT to prostate bed only.

tango65 profile image
tango65 in reply to GreenStreet

I agree it is a difficult situation. Perhaps you could consider to discuss with an oncological surgeon and also with an urologist the possibility of surgical extirpation of the positive lymph nodes and a few of the adjacent nodes in a compromised location for radiation.

If this treatment were possible then the RO could treat the rest of the lymph nodes in the pelvis and possible above up to iliac artery bifurcation and even beyond up to the aorta bifurcation. You could also explore the possibility of doing this direct treatments of the lymph nodes plus ADT alone or ADT and abiraterone for 18 months.

I wish you the best of luck !!

GreenStreet profile image
GreenStreet in reply to tango65

Thanks Tango and everyone. I have a lot to discuss at the second consultation which I will do in person now that my second C19 jab should have had full effect.

tango65 profile image
tango65 in reply to GreenStreet

Best of luck!!!

Have you had a PSMA PET scan? I am not familiar with the Dutch scab you mentioned but have had a number of PSMA PET scans and understand that these don’t usually produce equivocal results such as you seem to be working with.

I had a PSMA gallium scan at the same time but at my level of PSA it is less accurate than the Combidex Nano scan for the lymph nodes. The PSA scan only showed 1 equivocal lymph node whilst the Combidex scan showed that same node as suspicious ( more than equivocal) and 3 other nearby nodes as suspicious so I am pretty certain that they have identified the issue but they are very close to the bowel.

Www.mycancerstory.rocks seems to be helping my MCRPC bone mets. Wish I had known about this from the start! Reduced pain from bone mets from level 6-7 to negligible and transient...usually mild when fatigued. Still doing ADT with 2nd Generation. Improved quality of life, hoping it helps cure an terminal dx!

Mascouche profile image
Mascouche in reply to Rev214

What dosage are you taking? And how long before you felt an improvement?

Rev214 profile image
Rev214 in reply to Mascouche

Took 250mg goat formula 10% Fen is 2.5ml, mixed with 6 + drops of pharmaceutical grade DMSO, mixed results into 1/4:cup applesauce to make taste better.. repeated 7 days a week. Bought liter of goat formula fr valley vet. $0.35/ 2.22ml = 222mg.

Going to switch when it is done, to "happy healing" source of pure powder. 222mg dose cost about 24-ish cents.

If you do doggy packets, dose is over $1.20 / 222mg.

I had original met to pelvis and another area in pelvis showing activity. By the end ofvfirst week of fenben, pain was not requiring pain meds, end of week 2, it was negligible. That was last Oct/Nov.

Currently doing 300mg morning and evening, half life in body is close to 6 hours, so I felt safe doubling dose wit 2nd dose 12+/- hours later.

Now know tumor is there when tired, because of insomnia. But only discomfort of a 1 or bit more.

My scans have been coming back since November as "Stable." Would like them to be "No Evidence of Disease." But my quality of life makes it worth it. Hopefully will beat the incurable stage 4 Disease.

Confident to beat it, either in the here and now, or at least at the 2nd Coming Ressurrection: 1 Thessalonians 4:16-17; Revelation 21:4! Ultimately Jesus and His Word is the only lasting hope out there. Many facts and experiences convince me it is not just cunning devised fables but a message you can take to the Eternal Bank!

Orig Dx Gleason 9 T2a 2016. mCRPC Dx 10/19. BRCA2+ makes prognosis even more dire... Jan 2020 started 2nd Gen ADT Zytiga generic. Plus lupron.

Mascouche, Prayer for your success here, and in the hereafter!

Rev214 profile image
Rev214 in reply to Rev214

Mascouche, be sure to read Joe Tippens blog on beating small cell lung cancer. Lot of important info there and code to join Fb page by the same. Supplements are necessary according to research to see results as fenben by itself in a study did next to nothing.

Who is your oncologist at RMH? Will the NHS provide a second opinion or will you do that privately?

GreenStreet profile image
GreenStreet in reply to Big_Mcc

I haven’t got this far yet I am going to have a follow up consultation because I wanted to think through my options. I think you do have right to a second opinion on the NHS.

PSADT of over 1 year is usually considered low risk for patients in regard to distant metastasis. The low PSA @ 0.11ng is still low as well for proper imaging to locate any real targets for application of radiation.

I find the commentary on secondary cancer (bowels) interesting as in my research before I had salvage therapy post RP, my understanding was that this was very low, around 1-3% of patients... So I'm intrigued for some study support to this hypothesis that it impacts low weight patients as well (thin waistlines).

I had 72gy applied over 40 sessions, with 25 of those applied to the Prostate Bed and surrounding suspicious tissue, and the remaining 15 applied to nearby lymph nodes, a total of 47gy & 25gy respectively. The interesting thing is the 25 sessions having the same radiation total (1.8gy per), only took half the time, meaning to me, that more intense radiation was delivered during this part of the procedure.

All interesting if course. Again, I'm curious as to the secondary bowel issues as noted above, especially long term. Is it due to the prospective 2nd application if RT to the lymph nodes after already having SRT? This I would understand is problematic but the same tissue shouldn't be getting radiated.

Anyways, curious...

Best Regards

GreenStreet profile image
GreenStreet in reply to Cooolone

The same tissue would not be radiated. They have to leave a slight gap between where they radiated the prostate bed and any new radiation which in itself may mean that any micro metastasis is not eliminated. I think they are concerned about bowel damage rather than bowel cancer although there could be a 1% to 3% chance of that years later.

Cooolone profile image
Cooolone in reply to GreenStreet

You're right, I was confusing the secondary cancer with other side effects. And yes, if course tissue doesn't generally get 2nd dose radiation.

What about removing the lymph nodes surgically? When I had colon cancer, a great number of lymph nodes were removed.

GreenStreet profile image
GreenStreet in reply to rmarkley

I will need to ask but I understand to have a real chance of cure I need to radiate all the pelvic lymph nodes not just the 4 suspicious ones but I will ask in follow up consultation.

Justfor_ profile image
Justfor_ in reply to GreenStreet

There is this new PSMA guided lymphadenectomy. In a nutshell, a radiation detecting probe is attached to one of the laparoscopic arms of the robotic machine that guides the surgeon in real time during the operation. The standard PSMA radiochemical is given to the patient just before anesthesia. But, you have already taken radiation and surgeons aren't very keen on operating on irradiated tissue.

jnm.snmjournals.org/content...

GreenStreet profile image
GreenStreet in reply to Justfor_

Thanks for this

I believe Proton Beam radiation is mote precise with less damage to surrounding areas (Bowels) ?

This is a tough decision. One that I might have to make at some point. I also had RP then went on ADT and had SRT and now after 5 years my psa just reached .13. I think you have received a lot of good input, and I agree on the need for more data and input before getting radiated again if you go that route. Another factor to consider is your age. My impression is that there is a lot of variability around disease progression. Your first opinion said 10 y when pressed, but I guess it might be a wide range, e.g., 5-20 or even wider depending on your disease and treatment decisions. I am 47. Given the possiblity of rapid disease progression (it being less than 10 y) and that I have a lot of years left that I'd like to live, I'd probably pursue the curative possibility. A chance to cure would be hard to pass up. I still need to get scans and probably would wait on action until my psa is >.2 which could be next month. Thanks for sharing, godspeed and keep smiling and having fun because life is short... for everyone.

GreenStreet profile image
GreenStreet in reply to Jp2sea

I also meant to add good luck and all the best to you too👍

Thanks JP and completely agree with and appreciate your last sentence. It is a tough one I am “only” 62 and got diagnosed when I was 56. When my oncologist asks me how I am I say fine apart from the PC because, other than that I am in very good health. I did have to sort out a hernia a year after RP but apart from that I have been extremely fortunate to be in good health. My relatively young age makes this a difficult call because in getting the scan I wanted to give myself the best possible position to get a last chance cure. It was a real sledgehammer when my Oncologist was very concerned about further radiation and I need to give this very serious consideration because he is a specialist in CyberKnife and SRBT precision radiation.

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