Husband is fed up -- and so am I

[Waubesa94]

To recap, my husband, Mike, aged 64, dx at age 60 with aggressive Gleason 9, stage 2a prostate cancer. April 2017 scans revealed mets to skull, rib, hip, shoulder areas, but no metastasis to lymph nodes or major organs. By Autumn, the MO who he started seeing in May recommended spot radiation; my husband - stubborn as hell - insisted that he did not need it. By Christmas, he had severe lower back pain and a month later he was in agony at the doctor's office. The nurse practitioner he saw could see how bad off he was and said flat out 'that this is bullshit' and gave him a morphine infusion then and there. MRI scans revealed particularly bad mets in the left femur and right hip. (His femur was almost eaten through). He then had spot radiation and was started on Zytiga and Prednisone along with the Lupron injections. Since then he has had debilitating pain in his back and, as of today, can barely move. Please, don't anyone yell 'Get a second opinion'! because if it had been my decision, we would have gone elsewhere a long, long time ago. He is being seen at the UW Carbone Cancer Center in Madison, WI where we live and I am less than impressed. He couldn't see his doctor yesterday and was told to go the ER if necessary. At his last visit, the MO said he thought that perhaps Mike fractured a rib and that is causing the intense pain. He also noted that although there is 'no clear nerve root compression,' there is 'considerable spinal involvement.' I was too flustered, too disgusted, at the time to ask why they didn't do radiation to that area when they did the other treatments. Right now, I am mad as hell as I am tired of being blown off when I accompany my husband to his visits - I do not 'interfere' or demand anything, but I do my research and ask questions - and feel as though they are not doing anywhere near enough to help his situation. NO ONE should be in this type of pain. Okay, now I got my rant out of the way, a couple of questions: anyone else out there experience this and what reason did they provide regarding this intense pain? What did they do other than dole out morphine pills (useless) to help with the pain? Lastly, is it even possible after his last five radiation sessions - he originally had 28 the first year - to have radiation to help with the back pain? I don't even know what to ask anymore. Any suggestions would be appreciated. Genny

[Tall_Allen]

If you're asking whether he can have spot radiation to prevent painful fractures and spinal compression - yes he can. They have to be careful about the total radiation dose to important organs, though. Unfortunately, after the fractures and spinal compression have occurred, it won't have much of an effect. Palliative radiation can be done in just a couple of treatments. Has he had Xofigo yet? that can do a lot to relieve pain.

[Waubesa94 in reply to Tall_Allen]

No Xofigo, Tall Allen, but he did have a Zometa infusion last time. I also asked about the Celebrex and MO blew me off on that, saying it wasn't really recommended for prostate cancer and that he hadn't heard of STAMPEDE trial but would look into it. (I doubt it; no wonder we get called 'Dr. Google' but we wouldn't know a thing if not for looking it up and getting input from others who have gone through this). The spot radiation was to be done in 10 treatments -- they doubled up and did five, but not to back/spinal area.

[Hidden in reply to Waubesa94]

An Mo who hasn't heard of the STAMPEDE trial would send me in the opposite direction without pause.

[Tall_Allen in reply to Waubesa94]

The way I handle doctors with information I want them to consider is: I email the link to a peer-reviewed journal well before the meeting along with a short note saying "I would like to discuss this with you at our next meeting." That gives them time to consider it and think about it without putting them on the spot. Most major hospitals (and I would assume Carbone) allow emails now.

If they tell you it will take 10 fractions to treat his spinal mets, here is some good evidence arguing otherwise:

cancernetwork.com/oncology-...

pdfs.semanticscholar.org/c1...

I hate being cynical, but the only reason to recommend 10 treatments for pain palliation is to make more money for the radiologists and the hospital.

[Waubesa94 in reply to Tall_Allen]

You are absolutely correct about this, TA. I do NOT want to imply that my husband doesn't care about his life - far from it considering we have 21 year-old twins - but I think that like many people, he believes that the doctors are the experts and should not be questioned. Like Hell! At any rate, he did not e-mail the MO the information ahead of time and that left me to ask - you know, Dr. Google. From now on, that crap changes; I'll send the blasted e-mail and the doctor won't be able to say 'Oh, I don't know about that' as a mean of blowing me off.

[Waubesa94 in reply to Tall_Allen]

He already had the 'spot' radiation, but this was mainly for his hip and femur. There was NO radiation done to his back/spinal area and no recommendation since for this to be done. I still don't know if it can be done for that area or not; tomorrow he is going to talk to his doctor and we are going to get some answers and hopefully, a referral for someone at Mayo or Northwestern University. This has been a weekend from hell.

[Break60 in reply to Tall_Allen]

TA

What type of scan is best to find spinal compression?

Thanks,

Bob

[Tall_Allen in reply to Break60]

It can be seen on an ordinary X-ray

[larry_dammit in reply to Waubesa94]

Stage 4 here with Mets in ribs and spine. I was on Celebrex prior to treatment and dropped it, shortly after the chemo my back and shoulder pain was getting worse. I ask my oncologist about going back on the Celebrex and he said sure would help as well as glucosamine to help with the dry joints. If it makes you feel better do it.

[Waubesa94]

Thanks, Nalakrats - I've enjoyed your postings thus far We SHOULD be getting great care right now as UW-Madison is known for their research, clinical trials and such -- I can only guess that this is the 'standard of care' routine others have complained about and so there isn't going to be anything 'radical' done (ironic considering our city's history). Doesn't help that I'm not the actual patient, but wish hubby wasn't so insistent that everything is just fine when it clearly is not. At this point, I might just contact Mayo myself and damn the consequences.

[benninger]

I know how you feel. They look at you like you have lost your mind when you question them. Praying for you and your husband

[Emmett50]

Hi, Genny. I’m so sorry that you haven’t been treated respectfully during your husband’s appointments - and of course, so very sorry he is experiencing such pain. My husband is much earlier in his battle wit PCa so I have little knowledge to offer. He starts radiation next Monday.

However, I do want to say “Atta’ girl” and commend you for your strength, courage, and advocacy on behalf of your husband. Good luck on whatever path you and he take. You are another fierce warrior for a loved one with cancer. You make a difference. I’ll say a prayer for you both and I’m sending a virtual hug your way. Mary

[4luvofrob]

Dear Genny...my heart goes out to you...I, too, have a wonderful, precious husband whose tendency is to "be a good patient, patient," trust the doctor and do what the doctor says. Fortunately, during the first 6 years of his battle, we were blessed to have Dr. Snuffy Myers; but even with Dr. Myers, I did my research and brought up findings and asked questions. Since his retirement, we have a doctor who is highly rated, but who told us that she can think out of the box, but does not operate out of the box. At this time, we are waiting to find out if, as it appears, his cancer has evolved into neuroendocrine. I am nervous as to what I can expect with our new doctor and have thus far, been unable to find anyone in our area of northern Virginia who is specialized in this form of PC. I hear your pain, fear, anger, frustration, desperation and weariness and I identify. I pray for the Lord to give you and your husband strength, comfort, direction, discernment, peace and encouragement. And I pray for healing. I send you love and hugs and continued prayers, Barbara

[Litlerny]

Question EVERYTHING. I agree with Nalakrats. Go to the Mayo in Rochester. There’s a PCa oncologist there named Eugene Kwon who has several You Tube videos you can watch. The PCa oncologists at Mayo have to be better than the treatment he has been getting at home. Thoughts and prayers are with you both.

[habaeb]

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[Cynthgob]

First off the pain. My husband was on morphine until the chemo hit the bone mets. It took almost five rounds of chemo to get him out of pain. The more bone mets the more the drs lean toward chemo. He is up running around now but it was a long six months with the chemo. The one thing you need is faith in your team. Without that it will cause you nothing but angst. My team treats me with respect and always answers my emails. We do use Northwestern in Chicago which isn’t too far from you. I feel your pain. This is a rough journey . A prostate oncologist who specializes in cutting edge may bring you peace. Working thru the system is tough. Praying for you and your husband. There are some very smart people on this blog that do help me .

[j-o-h-n]

Dear Genny, I know this will not comfort you at this time, but most MEN (including me) do not like doctors and act like babies in front of them. A doctor tells a man that his exam is ok then the man says bye-bye and flies out the door. Women say "wait a minute doc, what do you mean by ok?" and then query the doctor for answers. Mars vs Venus.

Good Luck and Good Health.

j-o-h-n Monday 05/14/2018 2:38 PM EDT