Prostate Cancer in Bladder
The team was divided about whether a suspicious extension into the bladder seen on TRUS was something to be concerned about. They decided on a cystoscopy and told me they didn't expect to find anything.
My husband is GS 4+5, PSA 28, 100% of cores + Bone and CT scan clear. (age 59)
Unfortunately, there most definitely was prostate cancer surrounding the bladder neck. I saw it on the screen and knew it was cancer. They didn't need to tell me nor did they need to do a biopsy.
Has anyone had this experience?
I've read about cancer that originates in the transition zone (20% of PCa) and naturally egresses into the bladder and seldom into the lymph nodes or SV. Despite having a prostate full of aggressive cancer, my husband had no nodules in the exterior, peripheral zone. Most PCa comes from the peripheral zone.
The surgeon(who trained at Sloan Kettering) said he was hopeful to cut wide margins to remove the cancer but if not, the bladder would need to be removed. He wants us to do a clinical trial of chemo before surgery.
The rad onc had said told us that if cancer was found in the bladder, RT would not be a choice anymore.
I appreciate anyone's contribution. My mind is spinning!
Comments
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Spinning mind
You need a break. Your doctor is now recommending treatments usually suggested to stage 4 patients. If in your shoes I would get copies of all tests and exams and would get a second opinions from a medical oncologist.
For those interested in following your story and discussions, here are the previous threads;
https://csn.cancer.org/node/305811
https://csn.cancer.org/node/305960
Best,
VG
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Can we trust the all affair?
I noticed you have edited the above post making it more comprehensive; however, your assertions of PCa at bladders neck is baseless if not accessed by a pathologist. Cancer cannot be seen by the open eye unless it has formed a tumour of substantial size. That would have been detected in an image study and subjected by the urologist to biopsy for analysis in the laboratory.
I believe that you can guess the above if you reread your previous posts in your other threads. You have not shared details of the conversations between you and the urologist that is now suggesting chemotherapy. I also wonder why the radiologist has brush you off. Are these doctors from the same institution/hospital? Is there any interest by them in leading your husband to a clinical trial instead of a definite treatment with intent at cure?
Chemo and hormonal manipulations are paliative and recommended when radicals are not feasible. This contrast against your good work of investigations on radiotherapies. I am suspicious of the all affair. Is the urologist "forcing" your husband for surgery or involved in a clinical trial now recruiting patients with the characteristics of your husband's case? This is not new.You said before not trusting doctors fully for the past experience in your daughter's case and this time for the late screening on your husband's PCa case. Probably you need to do further investigations consulting someone out of the group or affiliated to above doctors. The results of the MRI you are awaiting for should also be subjected to a second opinion from an independent PCa specialist radiologist. Can you tell the type of MRI and the contrast agent your husband is going to have?
Second opinions on image studies and biopsy cores can be done in any place of your choice, sending the data by courier. JH PCa specialists do this and include recommendations for treatments.
Your positive attitude is the best so far. How is your husband responding to the matter.
Best wishes and peace of mind.
VG
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My assertions are not baseless VG
I assure you VG that the cancer surrounding the bladder neck was quite evident and the doctors confirmed it. I had looked at videos the night before the cystoscopy to get an idea of what we might see on the screen. In the videos I saw, biopsies were taken of very small irregularities with slight, if any elevation. What I saw on the screen during my husband's cystoscopy and what doctors confirmed was PCa in the bladder neck were relatively tall narrow structures. There were maybe 20 of them and they were all surrounding the black pole which I realized was the scope instrument emerging from the prostate/bladder neck. It was so bizarre and shocking I said "What's that?" and they didn't respond immediately. Maybe they were surprised too because they told us at the beginning that they didn't expect to find anything but if there was something suspicious, they'd schedule a biopsy after sedation. There was apparently no need for that based on what we saw because they didn't mention it after. I know that they took a few pictures and I'll see if I can get a copy. I've looked at cancer/cystoscopy images on the internet and can't find anything similar. This page shows a 3-d bladder cancer so you will see what I mean about being able to visually see the cancer but the formations on my husand were not clustered in a mass like this. http://www.bladderclinic.com.au/conditions/cancer/bladder-cancer
I realize, now that I've spent hours researching, that bladder neck involvement is not that common (even bladder neck margins with microscopic involvement) so I suppose this very evident formation is extremely rare.
The RO who raised the case with the team after we met her, had told us it was likely nothing but if cancer was in the bladder, she wouldn't do radiation. Something about not going so close to a sensitive area. I have not communicated with her since the cystoscopy. but I will confirm my memory of that with her. I'll write to her now.
As for chemo, it is a clinical trial for adjuvant chemo. Here is a link. https://clinicaltrials.gov/ct2/show/NCT02543255
I realize that chemo is typically a recourse for C-R PCa. I'm also wary of surgeons with self-interest who might be looking for study subjects. I'd say that the ROs and surgeons work as a team as they discuss cases together.
Based on your reaction and response to my post VG, and knowing your experience and knowledge about PCa, I realize that you've never heard of anything like this before. That scares me. I'm trying to be positive and look for hope but I have a sick feeling in the pit of my stomach.
I know the hospital has a 3T mp MRI machine (not sure of contrast) but I'll call and find out. My husband took the call for the MRI appt and wouldn't have known what to ask. My husband is not one to reseach plus he has a demanding, high level job. He relies on me to figure it out. He is one to look for hope and be positive, no matter how bleak the circumstances. How my heart breaks for him.
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Rad Onc confirmed
She responds to emails quickly. She told me that she discussed the findings with the urologist. She confirmed what I had remembered about now wanting to radiate the bladder. She wrote, " I have said it isn’t an option, but I would for sure favor surgery if possible."
All the same, I will continue to reseaerch and to keep an open mind.
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Last line
The last sentence in your top post says that a Radiation oncologist told you that PCa at the bladder made RT no longer an option. It seems to me this is backward: PCa that has spread is nearly universally regarded as suggesting that RT be the first choice, and that surgery be avoided. Was this a misstatement ?
Like Vasco, I find much in your husband's case as presented to be perplexing....
max
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Yes, that's what she saidLast line
The last sentence in your top post says that a Radiation oncologist told you that PCa at the bladder made RT no longer an option. It seems to me this is backward: PCa that has spread is nearly universally regarded as suggesting that RT be the first choice, and that surgery be avoided. Was this a misstatement ?
Like Vasco, I find much in your husband's case as presented to be perplexing....
max
The rad onc confirmed my memory of her comment in an email.
I've been looking for articles about Radiation as treatment with PCa spread specifically to the bladder but I can't find any.
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Second opinion for peace of mind
Desperate for Hope,
I am very sorry for the situation. I can image the anguish you are having with the occurrence. Your bravery surprises me and I applaud you for the evident efforts you are doing to have the best diagnosis and treatment for your husband. He is very fortunate.
I do not want my comments to distract you from your good work, however, I think you should get second opinions from an independent physician/radiologist, which opinion would provide you the deserved peace of mind.The information you share above allows a newer perception of the diagnosis following your post of Oct 17. Things are moving fast and spinning around.
The MRImp will add information for what has been found (if done with choline it may provide also an accurate info on lymph nodes involvement). Probably this MRI exam will conclude the process of staging and the "story" so far is not pleasant. Cancer spread into the bladder, if any, up to the ureters tubes are still classified localized but the probable T3 is now/becomes T4 disease. This may be the basis of the radiologist that follows the CAR guilines in radiotherapies.ASTRO similarly to NCCN guidelines accepts radiotherapy for T4 disease with reticence. As much as surgery in T4 patients, RT does not assure total cure. It becomes palliative so that it is reserved for different purposes. In other words the radiologist decides where and when to do it. Maybe one colleague of her would do the job in the extended prostate base if he finds the field suitable for the application.
Both, surgery and radiotherapy of bladder neck (sphincter) has risks for causing permanent incontinence.Max above is also suspicious of the affair. The clinical trial of your link is sponsored by the University Health Network, Toronto, Canada, now recruiting patients. Logically a number of hospitals/clinics and physicians are in charge of "supplying" patients. I believe your urologist to make part of their list for his proposal to you.
In any case, this is not bad because it provides the possibility of free treatment and due follow up, but it is conditional and prohibits any separate intervention (in this case radiation). The subject is simple: Hormonal only against Hormonal with chemo. The period is 24 weeks (6 months) which will then be followed by surgery. I am not sure if surgery makes part of the trial and it is included in the "free account" and what would be the extended period of follow up. Surgery should also be restricted to open against robot for the risk of worse outcome it involves.
You can investigate if it is possible of substituting the surgery with radiotherapy after the palliative trial (if RT is found feasible).I would appreciate if you can post the images taken in the cystoscopy.
Best of lucks,
VG
Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.
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Very grateful for comments shared here
At the first "world class" cancer centre, it was made very clear to us that there was really no choice but the chemo trial and surgery and the rad onc confirmed her view and concurred.
Because this treatment plan was viewed as suspicious and unusual, I wrote to a RO that is highly regarded at another facility. He responded that RT is definitely an option for my husbands case (knowing visible cancer was seen in the bladder neck). He's starting a stereotactic trial and is willing to see us in a couple of weeks.
Is it possible that a team would direct a man away from optimal care for him for the sake of a trial?
By the way, in response to your comments VG, they did say surgery would be open.
Thank you again.
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I like the way you move
Waiting two weeks for the consultation is comprehensive. Your husband's status wouldn't change and the therapies would be the same. The clinical trial continues to accept participants, and the surgery or radiation can always be a choice. After the second opinion and the MRImp results you will finally make a decision on an option. And that choice is the best and the one you most trust. You wouldn't regret it.
You question the possibility that "..a team would direct a man away from optimal care for him for the sake of a trial" , and I can tell you that your husband would not be the first. However, trials are controlled and safe affairs. The one you comment above is starting its phase 2 (it goes up to phase 3) meaning that there have been successes in the trial phase 1. Nobody knows at the moment if such way of treatment is in fact better than the ones considered optional at present. Further more, the trial regards the neoadjuvant palliative (hormonal/chemo) administration, for a latter surgery attack. This modality is acceptable for any radiation protocol too. Your doctor may have been involved in the phase 1 and could be a strong believer of its benefits in your husband's case. We cannot condemn his approach.
In any case, the facts discussed above regards the type of radical (RP or RT) one would chose with intent at cure. Both are proper under the same circumstances. The difference would regard their expected side effects. Surely that any involvement of positive lymph nodes, therefore a confirmation of extra capsular extenssions, turns radiation as better for localized treatments. Both would be palliative if the case is more extensive and not localized.
If I felt two weeks waiting too long for me, I would call a radiotherapy clinic (Nuclear department) and inquire if cancer close to the sphincter can be radiated with the intent of eliminating prostate cancer. You can call Dattoli Cancer Center in USA (famous specialists on PCa radiation), inform you live in Canada so that you would like just to check if it is practical/typical/common as a possibility without any commitment. I believe they would answer.
Best of lucks in your continuing good work.
VGama
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Your support is very helpfulVascodaGama said:I like the way you move
Waiting two weeks for the consultation is comprehensive. Your husband's status wouldn't change and the therapies would be the same. The clinical trial continues to accept participants, and the surgery or radiation can always be a choice. After the second opinion and the MRImp results you will finally make a decision on an option. And that choice is the best and the one you most trust. You wouldn't regret it.
You question the possibility that "..a team would direct a man away from optimal care for him for the sake of a trial" , and I can tell you that your husband would not be the first. However, trials are controlled and safe affairs. The one you comment above is starting its phase 2 (it goes up to phase 3) meaning that there have been successes in the trial phase 1. Nobody knows at the moment if such way of treatment is in fact better than the ones considered optional at present. Further more, the trial regards the neoadjuvant palliative (hormonal/chemo) administration, for a latter surgery attack. This modality is acceptable for any radiation protocol too. Your doctor may have been involved in the phase 1 and could be a strong believer of its benefits in your husband's case. We cannot condemn his approach.
In any case, the facts discussed above regards the type of radical (RP or RT) one would chose with intent at cure. Both are proper under the same circumstances. The difference would regard their expected side effects. Surely that any involvement of positive lymph nodes, therefore a confirmation of extra capsular extenssions, turns radiation as better for localized treatments. Both would be palliative if the case is more extensive and not localized.
If I felt two weeks waiting too long for me, I would call a radiotherapy clinic (Nuclear department) and inquire if cancer close to the sphincter can be radiated with the intent of eliminating prostate cancer. You can call Dattoli Cancer Center in USA (famous specialists on PCa radiation), inform you live in Canada so that you would like just to check if it is practical/typical/common as a possibility without any commitment. I believe they would answer.
Best of lucks in your continuing good work.
VGama
Thanks so much VG. I've been trying to find as much as I can about cancer in the bladder neck. I will contact Dattoli, thank you. At this point, my husband is willing to go for a cystoprostatectomy if it improves his odds. The mpMRI will hopefully give us some guidance about local spread and hopefully we are still N0, M0.
I found a picture that is very similar to the cancer we saw in the bladder neck although I will try to get a copy of the picture they took. It's at the bottom of this page- tall, narrow, tubular structures. http://www.urologygroupvirginia.com/adult-patient-library-web-pages/bladder-cancer/bladder-cancer/
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Cystoprostatectomy for what?
I am not a doctor but my opinion is NO. Do not do a cystoprostatectomy if not necessary. He risk living with an attached urine sac, etc, very inconvenient and terrible. Your husband should balance treatment with quality of life. He is very young and both of you should live fully the beauty of living with quality.
We are talking about your husband's body so that he should follow what he wants and believes. I wonder why he got such idea. Was bladder cancer also declared?
I am sorry to repeat that you should get a second consultation with a specialist, this time prostate and bladder. Survivors of the Bladder cancer board can help you (https://csn.cancer.org/forum/131).Some portions of the prostate can be dissected easily via TURP cutting from inside. Cystoprostatectomy cuts everything, including outer shells, into little pieces to be drawn via the urethra, with the risk of leaving behind tiny tissues infested with cancer. Recurrence is highly probable.
Sorry but I cannot help you in this regard.
Sincerely,
VG
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Metastasisdesperate for hope said:Yes, that's what she said
The rad onc confirmed my memory of her comment in an email.
I've been looking for articles about Radiation as treatment with PCa spread specifically to the bladder but I can't find any.
First, as best as I can determine re-reading yor posts, your husband does not have confirmed PCa in the bladder, which can never be established by what any form of imagining "looks like."
Confirmed PCa in the bladder would constitute metastatic disease, universally defined (except in blood cancers [leukemia, lymphoma] ), as "cancer in one organ having moved into a secondary organ." (PCa in an immedtate lymph node also is usually described as "localized," and regarded at Stage 3.)
But except for these, cancer in the bladder, if clinically established, would render any article discussing the treatment of metastatic PCa relevant.
max
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Urologist = prostate + bladder?VascodaGama said:Cystoprostatectomy for what?
I am not a doctor but my opinion is NO. Do not do a cystoprostatectomy if not necessary. He risk living with an attached urine sac, etc, very inconvenient and terrible. Your husband should balance treatment with quality of life. He is very young and both of you should live fully the beauty of living with quality.
We are talking about your husband's body so that he should follow what he wants and believes. I wonder why he got such idea. Was bladder cancer also declared?
I am sorry to repeat that you should get a second consultation with a specialist, this time prostate and bladder. Survivors of the Bladder cancer board can help you (https://csn.cancer.org/forum/131).Some portions of the prostate can be dissected easily via TURP cutting from inside. Cystoprostatectomy cuts everything, including outer shells, into little pieces to be drawn via the urethra, with the risk of leaving behind tiny tissues infested with cancer. Recurrence is highly probable.
Sorry but I cannot help you in this regard.
Sincerely,
VG
Does a urologist not cover bladder too?
No professional has mentioined cystprostectomy to us. I agree it sounds awful but we met a man who had that and he's getting along fine. The fear is recurrence from bladder invasion and permanent incontinence from removal of cancer in bladder. Maybe those fears are invalid.
The stress of all the waiting, not knowing, bizarre and unusual findings and the immense anger that the family doc didn't mention screening are really getting to us. I realize that with a high risk dx, PCa becomes your life and you never really escape it.
We see the oncologist on Thurs about the chemo trial (which at this point seems to me to be a greater risk of death than the PCa itself) and hopefully I can get a copy of the picture from the cystoscopy.
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Tests that influence decisions and help in the control
Well!!! we do not need to cut our body into pieces to feel healthy. I understand the situation is complicated but judge your actions. While waiting you can proceed with a series of tests that will influence decisions and will help after the treatment. For instance, hormonal treatments will diminish the level of testosterone in circulation so that your husband should know his present levels to compare with the ones after the shot and while under the drug's effect. Refractory to drugs can be verified via this blood test too. Heart health is also in jeopardy so that an ECG, etc, is appropriate. Chemo will affect the liver and kidneys, check your lipids and other markers. PCa loves to spread into bone. Hormonal therapies lead to bone loss so that a DEXA scan is appropriate to verify any existing case of osteopenia/osteoporosis. Some patients need to include in the protocol a bisphosphanate. Ulcerative colitis would restrict radiation in areas of influence. A colonoscopy is most recommended before PCa RT.
You can discuss with the oncologist regarding the above. Many of them do nothing but famous PCa specialists always include such checks before administering palliatives. My experience is positive in regards to the benefits that these cautious items brought to me. I found I have osteopenia -1.2. Kidney markers are just at the limit to allow me a PSMA PET exam in which my continuing therapy depends.
Being fit and diets are also very important while in treatment and to counter the side effects. You can investigate about probable effects from therapies and investigate how to counter. Many things to be done while waiting.
Best wishes,
VG
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sound advice!
My husband was in pretty good shape at the start but now has a personal trainer. We are definitely maximizing on ideal diet. They did blood work at time of cystoscopy so maybe they checked some of the things you mentioned. I'll get a copy to see. Not at all sold on the chemo therapy given that we are so very high risk.
Re bones do you take a calcium supplement? I know dairy fat isn't good.
Found this medscape article on cystectomy for PCa but can't find article so I wrote to him. Author stated that "these patients with tumor invasion into the bladder are very difficult to treat. If the patients are irradiated or they just receive hormonal treatment, then they have a high rate of local complications. There is no standardized treatment for these patients, and no clear recommendations, http://www.medscape.com/viewarticle/759560
I also met a fairly young man who was found to have PCa in bladder after his RP. He told me his post RP Psa was 2.2 and doubled in 4 weeks. Oncologist told him he wished he'd removed the bladder.
What treatment can be offered for kidneys?
Thanks again for sharing your vast knowledge.
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thanks.Old Salt said:About calcium
This has become such a complex story, unfortunately, that I will limit myself to just posting a comment on the calcium issue.
As Vasco already wrote, it might be useful for your husband to have a DEXA scan to establish a baseline. This will also tell you whether he already has osteoporosis. If so, adjustment of calcium (and vit D) intake might be advisable. But be aware that too much calcium in the diet isn't good either because of potential cardiac issues.
As an aside, I was surprised to find out to have osteoporosis prior to starting hormone therapy. Many tend to think that this is a woman's issue, but it isn't always.
This is great advice. My husband started on Firmagon 3 weeks ago but I'm sure its not too late. Indeed, I didn't think that men got osteoporosis. Very good thing that you had the scan!
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Difficult decision
Looking into a retrospective of your post above regarding the cystoprostatectomy, I believe you have talked with the journalist Becky McCall, the author of the article in Medscape (your link). She may have told you about what she wrote and you listen only to the negative opinions provided to this cohort of patients; locally advanced T4 disease. It is pity that you have not read the full article. Try to sign up to the Medscape site for the access to their library. Their publications are very useful in investigations and trustful.
This article relates to a European trial done in 62 patients with clinical stage T4 prostate cancer who were treated with radical cystectomy and followed during 5 years. Martin Spahn, MD, from Germany, the man of the trial comments that they have found “… 35% of patients who underwent a cystectomy were tumor free and 20% were metastasis free 10 years after surgery. There was no difference between cancer-specific survival and overall survival”.
The above results are super. However, cystoprostatectomy is not listed in the recommendations of NCCN guidelines. Instead they recommend RT or palliative or a combination of both (multimodality approach).This multimodality treatments is in fact one of the purposes of the study of Dr. Spahn but it involves surgery as the prime approach. Miss Becky McCall writes:
“Patients with stage T4 prostate cancer are at high risk for disease progression, ….Surgery is gradually becoming accepted as a first step in a multimodality treatment in selected patients, although controversy remains regarding this approach. Radical prostatectomy is often unable to achieve complete tumor removal, and positive resection margins may have a deleterious effect on the outcome, they write in their poster.”
This combines with the trial your doctor has recommended; a trial to verify surgery in a setup of palliatives.
She adds that,
"If tumors are locally controlled and patients receive adjuvant hormonal treatment in a multimodality approach, this is beneficial," added by Dr. Spahn. This multimodal strategy in prostate cancer might prevent local symptoms; it should be evaluated prospectively, he concluded.”
She still adds that Bernardo Rocco, MD, from the division of urology at the European Institute of Oncology, adverts to the fact that “…before the procedure; investigators sampled the bladder and found tumors with 100% certainty of clinical stage T4 disease,"
In other words, the above results are exclusive of this trial so that you should ponder on what to chose. Go for cystoprostatectomy after 100% certainty of cancer in the bladder neck (biopsy is required not just a picture), RP + Palliatives or RT, or a combination of them all.
I am sorry for this saga you are involved. Please accept my previous suggestion for you to get second opinions from professionals.
Here is a link regarding nutrition;
http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdfBest wishes,
VG
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About calcium
This has become such a complex story, unfortunately, that I will limit myself to just posting a comment on the calcium issue.
As Vasco already wrote, it might be useful for your husband to have a DEXA scan to establish a baseline. This will also tell you whether he already has osteoporosis. If so, adjustment of calcium (and vit D) intake might be advisable. But be aware that too much calcium in the diet isn't good either because of potential cardiac issues.
As an aside, I was surprised to find out to have osteoporosis prior to starting hormone therapy. Many tend to think that this is a woman's issue, but it isn't always.
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cystectomy article
I'm signed up for medscape and I read the article but didn't speak with the reporter. I've since confirmed with the author of the poster that none of the men in the study had RP because their cancer was too advanced. Hopefully, that places us in a more hopeful position. Unfortunately, the data upon which the article was based has not been published yet.
Yes, I will ask about a biopsy for the bladder finding. I realize also that it will be important to ensure the surgeon is very experienced in high risk surgery.
I also wonder if frozen section is routine or if its something to ask for.
Thanks for the nutrition link- we are well on the road to that. Also, lots of nuts! https://www.ncbi.nlm.nih.gov/pubmed/27280637
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