Need to restage cancer

[Shamrock46]

Due to being castration resistant and PSA rising while on Xtandi/Lupron, his MO says she needs scan(s) to restage his cancer. The problem is that my husband can't tolerate lying on his back for the duration and/or keep his arms raised above his head. He tried to have a PET scan last year but had to cut it off due to the pain and breathing problems. He has cardiac issues as well and has an inplanted defibrillator. We've asked the MO if he could be sedated but that went nowhere. He did manage to endure a short CT scan last Fall of his chest area that only lasted 15-20 mins. I'm wondering if anyone has any other suggestions....I've even wondered if old-fashioned xrays would show anything.

[GP24]

If he is resistant against Xtandi/Lupron the next step is a chemo with docetaxel. You don't need a PET scan to decide this.

[Shamrock46 in reply to GP24]

Thanks for the reply. He's had so many SEs from meds he's not interested in chemo. It's been a bumpy road. He had a terrible reaction to Toradol at original surgery that caused acute kidney failure/11 days in hospital....then persistent pain for couple mos. that arrogant surgeon didn't believe but ordered ultrasound showing seroma and a procedure....then hemolock from surgery dislodged and attached to bladder causing blockage and another procedure. I get why he's apprehensive.

[Tall_Allen]

What is his PSA and how fast is it rising?

[Shamrock46 in reply to Tall_Allen]

Numbers still small but it's trending up. Undetectable until July when it was .04, August .08, October .27 and last week .52.

[Tall_Allen in reply to Shamrock46]

About a 3 month doubling time? That's pretty fast, indicating growth, even without seeing it on a PET/CT scan. Maybe she wants to see at least another PSA (3 readings over 0.1 are needed for a proper PSADT).

[Shamrock46 in reply to Tall_Allen]

Yes, I agree and that's why I'm worried. She's indicated she wants to know where it's at...as do I. Searching for answers when I don't know the questions and I'm hoping she can tell us what we can expect or what to watch for. Thanks for your responses.

[Tall_Allen in reply to Shamrock46]

What is the difference, where it's at? What therapy would be different if you get a picture of the largest metastases?

[Shamrock46 in reply to Tall_Allen]

That's my husband's frame of mind. I guess we'll find out tomorrow. Maybe she wants to know if it's spread to lungs/organ? She's been following small spiculated lung nodules. If it's more in his bones (spine, hips, e.g.), or anywhere else, maybe quality of life issues/expectations? I would just like to know a little more about what's down the road and drs. seem to avoid such topics. His cardiologist keeps saying "we'll talk about that later" when I ask about who/when to call to shut off his defibrillator. The MO always says "everyone is different." I'd like to know what symptoms will appear and how to deal with them, etc.

[Tall_Allen in reply to Shamrock46]

If the nodules in his lungs are cancer (many are benign), docetaxel usually does a great job on them.

No one can predict where the cancer will attack next. You'll have to deal with it when you get there.

[Shamrock46 in reply to Tall_Allen]

One of my problems is that during this journey there is so much conflicting info and opinions. When nodules were 1st seen (about 3 yrs. ago) primary said we should seek aggressive treatment and have surgery. We went to well known/respected Chief of Pulmonology at hospital. He disagreed and said based on my husband's cardiac issue he would leave alone because of risk of lung collapse from biopsy and he thought them too small, maybe even from previous infection and should just be watched ...even pulled scan up on his computer and provided thorough explanation. He retired a yr. later. Now they're becoming an issue again for a scan. As you said initially, what difference does it make? Not looking forward to tomorrow but hope learn something in the process that's helpful. Thank again for your input!

[chips1942 in reply to Tall_Allen]

Hi Allen, Read your comment re prostate cancer in the lung treated with Docetaxel. I have PCa in my lungs & had a lobectomy 3 mos ago also another lung lesion identified by biopsy. Currently on Relugolix & Darolutamide with PSA. 0.05 with the lung nodules stable based on PSMA scans. My oncologist & I are discussing the addition of chemotherapy. Just checking to see if you have any study references related to PCa lung Mets where Docetaxel was added showing benefits. I’ve looked through the literature but have come up empty. I would appreciate your thoughts & any references. Thanks, Phil

[Tall_Allen in reply to chips1942]

Nothing specific, just the data on lung metastases showing they are comparable in response and prognosis to bone metastases.

[Cateydid in reply to Tall_Allen]

This appears to have been the case with my Joe. His chest growth reduced significantly as a result of 6 doses of docetaxel in 2017. Minor SEs.

This time he took only 9 of 10 doses. Got pneumonia twice: I wasn’t sure he’d make it. PSA at around 2.4, so we wait a wee bit and let his body recover from the chemo. Then, when his PSA rises, as we can expect it will, we’ll see what’s next….

[Cooolone in reply to Shamrock46]

When entering systemic therapy such as Chemo/Docetaxel... What significance does the "location" present? I think that is the question! Because the systemic therapy will attack any and all "fast" growth tissue/cells, both healthy and cancerous.

It's great how some oncologist "want" things, when it is the "want" of the patient that should have a priority over the want or need if the oncologist... I fail to ever understand the person who is NOT cancerous, thinking they have complete priority over the patient, their want, desire, and need.

Just venting a little ;). But I hope the point is made, to advocate for your care, in conjunction and coordination with your care team, but not submissive to them either. You have a right to focus and direct your care...

Best Regards

[Shamrock46 in reply to Cooolone]

No one, I think, has ever called me submissive. Our MO wasn't specific about the "why" of needing to restage and I plan on getting lots of answers tomorrow in light of his PSA increase again last week. She's not going to appreciate my husband's being adamant about no scans, no chemo, no radiation and no bisphosphonates. I'm just hoping to get more info about what symptoms to expect from here on and how to deal with them. I know there's no crystal ball but I'm also going to ask how quickly the PSA is now expected to rise w/o Lupron & Xtandi since they no longer seem effective and he's tired of SEs. I guess I'm looking for answers when I'm not sure I even know all the questions. Thanks for your input!

[Cooolone in reply to Shamrock46]

My post wasn't specifically directed at you, but more the response from your Oncologist.

Best Regards and Good Luck

[Farmhand in reply to Shamrock46]

Does he have any targetable genetic mutations?

[mrscruffy]

I eat a THC edible as I have two bad shoulders. Works for me

[Kevinski65 in reply to mrscruffy]

Really, how do u get average THC levels. The stuff they sell is , sometimes , 30% THC. That's a far cry from the 7% I knew in college.

[mrscruffy in reply to Kevinski65]

Most commercial edibles are 10%. If I make my own butter which I sometimes do they are way stronger. Those I use recreationally. If I can't sleep I hit an 89% THC pen. When I go for scans I consume about %5

[Shamrock46 in reply to mrscruffy]

I don't have a clue about our brownie. It was secured by a trusted friend who said "it's the good stuff." My husband said he's saving it for when "he needs it."

[mrscruffy in reply to Shamrock46]

If it is homemade probably pretty strong

[Shamrock46 in reply to mrscruffy]

Honestly, I'm clueless about such stuff.

[Shamrock46]

Thanks! I think we have a brownie in the freezer I forgot about!

[Jancapper]

I suffer from claustrophobia. I asked my doctor for a little help. He prescribed two 1mg Ativan pills. I took one immediately before my MRI and PSMA scans. That’s all it took for a calm and successful scan. Here is a link detailing how the University of Wisconsin deals with this as well. Very simple yet effective.

radiology.wisc.edu/wp-conte...

[Shamrock46 in reply to Jancapper]

Thank you....I'll ask the MO tomorrow.

[Kevinski65]

First off, they can put you're arms by you're side if he can't over his head. If he ever played golf, have him go through the 18 holes at the golf course. By the time he's done , he'll be out of the tube.

[Shamrock46 in reply to Kevinski65]

Thanks but never a golfer. And one of the SEs of Xtandi is anxiety.

[Cantchoose2 in reply to Shamrock46]

I think the point being made was to go in with something to keep your brain occupied. I relive my high school gymnastics routines. There's muscle memory with athletics so that's a good one - the brain relaxes and concentrates, even when the task is imaginary. I also play piano, so I'll sometimes play through a long piece in my head.

[Shamrock46 in reply to Cantchoose2]

I understand and am grateful for the suggestions. I'm afraid the pain and breathing problems override such mitigation.

[jackcop]

JanCapper does what I do if anxious about scans: he takes an Ativan, generic Lorazepam, to help him with his fear of closed spaces. If your partner's cardiologist allows it, that is a safe anti-anxiety drug.

[Shamrock46 in reply to jackcop]

Thank you!

[gsun]

No coffee before. I made that mistake once. Usually, I almost fall asleep.Ativan should do the trick.

[Shamrock46 in reply to gsun]

Thanks. That's 2 for Ativan.