Support for the cancer patient

Parent Cafe
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IMO I would recommend waiting to tell people until all the tests are in and your DH decides on a treatment path (if he even needs treatment right now.) It sounds like that ship has sailed for some people, but I might hold off on telling more people right now. (I’m saying this all gently.)

That’s great!

One thing I would strongly encourage him to get is the genetic testing of the biopsy samples. One of the primary tests is called Decipher, but there are a handful of other choices, and insurance doesn’t always pay for these. The results can be very helpful because they categorize the type of cancer and risk level in a way that the physicians can’t. Many what I will call average community based physicians (said with no shade) don’t know about these tests and/or don’t recommend them with regularity.

Hugs and good luck.

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Thanks – we’ll be sure to ask about Decipher, then. When our youngest was sick we had 2nd opinions w/CHoP’s blessing, from Johns Hopkins, so we aren’t opposed to travelling , we just don’t foresee this being an unusual case. The additional testing might prove us wrong and that would be good to know.

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It’s a fair comment. Everyone is different.

I called my sister right away (who lives with my dad) but we both agreed I should not tell him - he would be devastated. So I didn’t want it getting out, so people at work knew and that was it.

After my treatment was done, I flew to my dad and told him in person and he had a tear in his eye. I wanted him to see I was ok. For 6 or 9 months he’d call every few days, and ask are you ok.

The big thing is - when you find out officially you have the big C (my order was MRI, then biopsy which is what told them for sure) - when you find out you have it - it’s crippling. You think that’s it. I’m a goner. Fortunately you’re not when caught in time. Then they give you a score - what does it mean. My first score was a 5 of 5. I forget what the system was but it’s a tumor size. The cancer score was a 3+4 - which - doesn’t sound great but for some reason is better than a 4+3. It’s all daunting.

We are all different. I didn’t need others. The drs, nurses and especially the radiation techs who see this daily - they were all comfort.

In the end, as a patient, you have to focus on kicknig it’s a$$. Talk to Drs and others - do not do not do not - go on the internet. They tell you that up front. Did I listen? Nope. There’s too much bad stuff - that apparently wasn’t reality to my situation.

One thing I got lucky with - because I chose radiation over surgery and because you take strong pills, the Dr. assigned me physical therapy to strengthen the joints and muscles. Basically, it was fitness training. That put me onto a gym regiment that I’m still at 18 months later.

So good can come of it too.

Everyone is different - how they handle it. But the focus (IMHO) should be on him and supporting him. If the family doesn’t show concern or really isn’t concerned - it’s just who they are as human beings. As you note, it runs through the family - and this might be a big shrug for them - and honestly, for so many with prostate cancer, while it does change things long term, many live long, full and complete lives - so in that sense, hopefully it is a nothing burger.

But the focus, most importantly, should be on him from your and his POV…you can’t let the stuff outside of that worry you.

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Deleted due to inability to access whole article.

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Oh yeah, even since his father had it, things have changed. DH had his psa done every 6 months probably for the last four years. He opted for the MRI because of velocity, and those results are pretty definitive so he opted for a biopsy. His dad has gone on to have a shoulder tumor, and now bladder cancer; his uncles cancer metastisized. Those are on DH’s mind.

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If comfortable I hope you will let us know the biopsy results. You have support here!

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I don’t think posting part of an article is helpful.

PSAs aren’t entirely accurate (that’s why rectal exams are done, as well as MRIs for some in order to dx.) It’s important to realize that one can have a normal PSA and still have prostate cancer. Even proliferating prostate cancer.

People have to do what is best for them given their unique situation, health history, family history, genetic profile, etc. The primary way to properly make a treatment decision, once it’s known there is a tumor, is to have a biopsy. Patients and their spouses might also want to become familiar with the prostate cancer dx and treatment guidelines at NCCN. (I think creating a free account is necessary, so I’m not linking it.) If one wants a second opinion, contact the physician creators of the guidelines.

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In 2011 my husband was diagnosed with lymphoma. We didn’t tell all the details to my then teen daughter until he had a course of action determined. Then we shared everything with her and continue to do so. We only shared with a limited number of friends and didn’t ever tell my parents or in-laws as they were old, had their own medical issues at the time, and we didn’t want them to worry.
We did this mostly because my husband did not want the attention and worry of others. My husband felt supported by my daughter and me and that was all he wanted. Obviously this is a personnel decision that will be different for different people.

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Sorry - that sounds hard.

I was starting to fret that I’ve not sent BIL a card or anything as he deals with some very serious cancer issue. Then I realized that my “contribution” is lending my husband, who bought a one way ticket to Boston to go help and has been there for the past 3 weeks.

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The pathology report is back, but we don’t see the doctor until mid February. We are not doctors but it looks like half the biopsy sites are def cancer, one is maybe, and 4 are benign. The various scores and grades lead us to believe his doctor is likely to lean towards more waiting; DH would rather “do something now” like radiation. He worries that waiting for it to spread (and it might not) will limit his choices later on,and you can’t tell a mathmetician there’s a non zero chance of something and not have that be their focus, lol.

he did ask about genetic testing and was told they do that if/when appropriate, and we will ask for that now regardless.

And no, his family has still not called or contacted him. I have been updating his mom just bc it seems like the right thing to do.

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It must be hard to wait two weeks! Lots of decisions ahead. I do hope that since the biopsy shows cancer, his family will be in touch. Support for him and you need support too! I am sure your mathematician spouse will also look into side effects, cost/benefit ratio and so on!

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We have been going through this for close to two years now. H had an elevated PSA in May 2024. After 6 weeks, I think, it was retested and had gone up substantially. Referred to a local urologist and that was a nightmare. After his biopsy, he had a Gleason score of 8, indicating an aggressive cancer in multiple sites. Finally got the referral to UVA for a surgical consult - that was November. H was not a candidate for surgery, so finally in December 2024 saw radiology. Hormone suppression, then brachytherapy in 2025 and daily radiation for 30 days. And we’re not done.
Prostate cancer is not a joke but I think it’s difficult for people to acknowledge/address. It’s not really something H likes to talk about.
@greenbutton, I am holding all the good thoughts for your H and for you, especially. It can be a lot to deal with but don’t be Dr. Google while waiting to see the doctor. You’ll scare yourself silly. If I can offer any resources or support to you, feel free to PM me. It will be okay.

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This is important. The doctors tell you this…and of course, I did anyway. And yes, it will be alright - that you’re addressing it is most important!!

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My H had at least 1 gleason 8 score and some 7s. He could only tolerate 6 months of testosterone suppression oral medication and is hoping he will feel better soon.

They really don’t recommend surgery for patients 70 and older so H had beam radiation & brachytherapy. Feel free to text me too if it’s helpful. We are fortunate that my BIL and a friend we go to theater with are both urologists and both they and H’s urologist have great confidence in the oncologist.

His recent blood tests show 0.02 PSA and undetectable testosterone.

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I have to disagree about avoiding research. I had breast cancer and would have had unnecessary chemo if I had not done research. I also would have done 10 years of hormonal therapy unnecessarily instead of 5. I found out about a test to determine benefit of extended therapy and got a “no.” I took the test to my oncologist to sign and she now uses it for other patients (and it is now in the NCCN guidelines). I had conflicting pathology results.

For bones, I found an online study that said Evenity mostly worked in the first months, did only 4 months instead of 12, and now my endo is recommending only 3 months now that the study has been put in practice.

I could go on and on.

I have to add that health forums like Mayo Clinic can also be really helpful. For me, a breast cancer forum and there might be an equivalent for prostate. (For sure, it helps to be aware, as I am sure you are, that some online info is outdated or wrong so yeah, maintain skepticism). AI can actually be helpful in suggesting questions for the doctor too. ( I only tried this last month, but )

In lieu of research, a second opinion is useful, if your spouse isn’t into research.

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I 100% agree that research can be helpful - once you know the diagnosis. H isn’t great at research, so he would go to any random site and treat the information as gospel. I’m not saying that would happen in this instance, but it’s often best to wait for the physician to weigh in initially.

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It is your H’s choice, but he shouldn’t make the choice until he has more info…talking to the doc, get the genetic test results (Decipher, et al), read the NCCN treatment guidelines (if he must google/do research.) The genetic test will give a full risk profile of the cancer at the point in time of the biopsy.

When he has more info, he can decide what to do. And it’s ok for him to opt to treat even if his doc and/or the genetic test says active surveillance is indicated (it’s not called watchful waiting anymore.) He also might get a second opinion from another doc.

Hugs to you.

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I wasn’t aware of the NCCN so now I have done some reading there, thank you.

The mid-February appt is with his urologist, who (I guess?) will hand DH off to an oncologist so I think it will be March at the earliest before we have much to go on. (I tend pessimistic in all things medical scheduling). He has seen this doctor for a decade at least. But how do I judge a brand new doctor and every blessed practice calls itself a “cancer center” these days. (My mom and FIL both have cancer)

Our local hospital has its own health system/corporation, which intersects with the local satellite offices of doctors from the nearby mid size University. So two different systems available. The nearest really comprehensive medical centers are 2 and 3 hrs away. Right now I worry about best care and how to judge whether to change doctors/systems. Țhat’s why we read — to be prepared to say “that’s a pretty unusual plan” or “why are we departing from typical practice” etc. You are so at the mercy of the system.

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Makes sense, and the genetic test results will take 6-8 weeks, so I would get this going now, if your H wants to do that. Sometimes insurance doesn’t pay for those though.

This can be tricky for sure, and agree we are all at the mercy of the system and/or our insurance. Second opinions can be handled via zoom though, so for example, your H could even see the doc who wrote the NCCN guidelines (he’s in Chicago, always a caveat that any second doc would accept your insurance.)

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My DH was never handed off to an oncologist. Everything was handled by the urologist.