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Dr. is giving us wrong info
This is my first posting. I’ve been following all of your posts and have found them helpful, and have learned a lot just not soon enough. I have serious questions about my husbands radiologist/oncologist.
My husband is 75. PSA 18 Gleason score 8. Don’t have any other info such as decipher score and don’t know if one was done. He’s into his 4th of 18 months of lupron and has finished 10 of 25 radiation sessions.
When we met with the radiologist/ oncologist I had done some research but obviously not enough. My husband who will research for days about a new phone did not want to do much about prostate cancer so for good or bad it was on me.
To start, our massage therapist wanted a drs. ok before she would treat him because she said cancer patients can require special treatment. Asked his dr., he said you want a massage get a massage. A few weeks later when the nurse from lupron came to give him his next 3 month injection she went over some dos and don’ts. One was absolutely no massages. Pressure could rupture the sac the medication is dispensing. So who do I believe? I also asked about a spacer before radiation. Dr. said it doesn’t do much good and involves surgery. Now know that’s not true and the Canadian cancer society recommends it. Asked about Tulsa pro. He said nothing is proven and it costs 200,000-300,000$. My husband probably was not a candidate for it and it’s not available in Montreal but for any one from Ontario if you are interested, Sunnybrook hospital offers it for about 33,000$. Why that ridiculous story. He never asked about family history except for pc which his father had when he was 80 and no treatment was done. My husband does have a family history of dementia. His father died from Alzheimer’s and his only sibling (1 1/2 years older) has advanced dementia. So I’m worried about the long term effects with 18 months of adt. I did get my husband to get a physical with his family dr. Tests show blood in his stools. He’s not on aspirin doesn’t have hemorrids or ulcers. They want him to have a colonoscopy asap but he can’t have one till 2 months after radiation finishes. He also has osteopenia and high risk osteoporosis in his hips but he had just started Fosamax. Am I crazy or being ridiculous worrying about his dr. contradictions and everything that’s going on? A dr. calls every Tuesday to ask how’s he doing but any questions my husband asks they say that they will get back to him but they never do. Apparently he will get to see the radiologist/ oncologist 6 weeks after he finishes radiation. His dr. also said, not in front of my husband, that if he’s not interested in relations it’s my fault. That’s another thing I’m failing at.
Any comments or suggestions would be appreciated.
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@sts, you have good questions that require answers. It sounds like you will have some work ahead of you to keep asking questions to advocate for your husband's care and to double check information. Have you considered getting a second opinioni? If getting a second opinion is not an option, you could contact the hospital's Patient Relations or Office of Patient Experience department
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2 ReactionsSo sorry to read these issues with you medical providers.
My experiences with my Prostate Cancer Doctors has been very, very good. They take time, answer any questions, respond to portal inquiries and I can reach them easily.
Your treatment facility should have a “patient advocate/representative”.
I think that may be your best option at this point.
Since radiation treatments have already started, do not know how you could go to another Doctor nor get spacer implanted.
My heart goes out to you and your husband. Best wishes on getting better care.
Your husband could get a massage, but they should be told to avoid the area where the Lupron injection was put in. I’ve never heard of needing a massage for prostate cancer. Never had one and I’ve had prostate cancer for 16 years.
The spacer helps prevent the rectum from being damaged, but some doctors don’t like using it. If the cancer is on the side where the rectum is, then it is a possible problem to use one. They are beneficial.
It’s a little late for Tulsa pro. You’re already 10 sessions into radiation. Is he having any problems with burning on urination or diarrhea? There are solutions to both of those problems. They usually go away after a while, but not always. People I’ve worked with had them appear within the first three or four sessions at the most.
The dementia risk is pretty mixed. Some say it can cause it to come on sooner others say it doesn’t. Most people do get some brain fog on ADT, but it is not the same as dementia. Considering the fact that a sibling has advanced dementia at 1.5 years older, Your husband probably doesn’t have the problem yet or you would at least notice some mild dementia issues by now. ADT Can result in forgetting names of things, but generally talking about issues is not really a problem. I’ve been on ADT for almost 9 years and while I have some brain fog, it does not affect my ability to talk with people about very significant issues, including prostate cancer treatment.
I took Fosamax for the first six years. I was on ADT. It kept my bone strong, even though I fell a few times I never broke anything. It has the lowest risk of osteonecrosis and has kept me away from Osteoporosis, Though after all these years, I do have osteopenia.
While on ADT, the desire for Relations really diminishes significantly. It may not even be possible to get an erection while on ADT for some people. There are ways around it if he’s interested, but he may not be at this point, and it is not you, it’s Lupron.
If you have any more questions, you really should pose them. There’s many people here that can answer them for you..
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4 Reactions@colleenyoung
Thank you for your suggestions. The Medicare system in Quebec works differently than the US and getting 2nd opinions can be difficult and not very timely. My husband seems to have blinders on as far as discrepancies are concerned and has said he’s just going to do whatever the dr, says. His answer to the massage contraction was maybe the dr. isn’t that familiar with lupron?!!!
@colleenyoung
I will also check out the patient relations. Thank you
It might help to retest the stool for blood. Perhaps your Primary could do the stool cancer screen Cologuad.
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1 Reaction@jeffmarc
He doesn’t need a massage for the prostate cancer. He’s an avid golfer we both do a lot of gardening so we try to treat ourselves every 4-6 weeks with some muscle relaxation.
I understand the spacer could interfere with where the radiation is but I wish he would have said that than what he did say.
I know you’re an avid poster and you seem very knowledgeable on the subject so I really appreciate your words of encouragement
@jeffmarc
Sorry, I’m a bit discombobulated and reread your comments. Yes he’s having a lot of burning when urinating and fluctuates between constipation and diarrhea. Told the dr. with the weekly phone call and he just said it’s normal
Yes, ironically, although Tulsa Pro is a Canadian-developed procedure, Canadian provincial healthcare systems won't fund it yet because
1. There's not yet sufficient evidence to show that it improves outcomes over existing procedures (both Canadian and U.S. urological societies still classify it as "emerging" rather than "standard of care").
2. It is very expensive compared to alternative procedures.
3. It ties up a high-demand MRI machine for many hours.
That said, if #1 is resolved, the others will follow.
In the U.S., on the other hand, #2 and #3 are advantages for hospitals that need big billings, and have too many MRI machines that they need to find excuses to keep busy.
So it's just a matter of different health ecosystems, but (so far) there's no evidence that your husband is any worse off without Tulsa Pro. The same applies to Proton (vs Photon) radiotherapy — there's no evidence yet that it improves survival or delays progression, but once a private U.S. facility invests in the (very expensive) equipment, they have to keep it fully booked to pay back the cost and add a small profit.
In the end, both the Canadian and U.S. healthcare systems produce comparable outcomes for prostate-cancer patients; they just follow different paths to get there (the U.S. one is a *lot* more expensive, both for taxpayers and private insurers, but also a bit more flexible).
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3 ReactionsSorry to hear your doctor is doing this to your husband. There are some prostate doctors in the US that you could consult with a video consult but they do charge a fee. Dr Scholz has many informative youtube videos for prostate you can check them out if you have not already. You can also consult with him via video conference but it's not cheap. Now I know why I hear a lot of people say the Canadian health system is really bad. Best wishes!