My Joe has been experiencing increasing pain in his left hip and thigh. Today he said the thigh is numb.
PET scan scheduled this coming Tuesday.
He thinks it’s a hairline fracture. Is it wrong of me to hope he’s right, vs his cancer having landed there?
He’s 4 months post-Pluvicto, and he’s read that the cancer can come back with a vengeance after Pluvicto. On Friday he started taking 5mg Oxycodone every 4 hours with only minimal relief. He’s using a walker which helps a lot.
He has little appetite: could it be because he’s not taking steroids like he has the last 20 days (prescribed by an ortho doc who wanted him to go to PT)? The PT looked at his record and saw he has mets at L5 and refused to do PT until Joe gets the PET.
I’m ramble-writing. I don’t presume there are any answers, and, while I am committed to hope, I’m also a planner and wish I knew what was next (don't we all?).
We are planning a trip up north to see all three of his kids and their kids. He has said he’ll try to endure the pain of a six hour drive each way cuz he doesn’t know if or when he’ll go again.
I’m usually pretty composed, but am feeling the feels this morning. I’d hate to tell you how many times I wrote-deleted-wrote this note🥴, vacillating between not wanting to impose on your lives, and needing help in my own.
The temptation to delete is getting strong, so I’m going to send…….
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Cateydid
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Hi Cateydid -- not sure I have anything useful to offer, except reassurance that you were right to hit "send." I looked at your profile and see that you and Joe have been at this for 15 years? Way to fight the long battle! Hang in there, I'm sure there are more positive developments ahead.
One thing I might have missed in his story -- has he had a DEXA (bone density) scan? Since he has been on ADT, osteopenia (or even osteoporosis) is a possibility, and could account for a hip fracture. Also, the PSMA PET scan is good for detecting PCa, but not so much for fractures; an MRI, CT scan or even x-ray would be more effective.
Anyway, good luck to you and Joe, and let us know how it goes!
Thank you so much for your reply. He had x-rays of both hips. They showed bone-on-bone in the right hip, and nothing on the left (where the pain is) Wondering if his onc suspects it the cancer to have ordered PET vs an MRI……
We’ll know soon.
Thanks again for taking the time to respond. It really helps me feel less alone.
I meglaectes to mention I have requested Palliative Care, too.
Cateydid, I have nothing to offer medically, but I just wanted to let you know you are NOT alone. I read here daily, as do many, and what a wonderfully supportive group this is. Don't ever hesitate to hit 'send'. What you said about wishing you knew what was next really resonated. My husband Eric and I are only 2 years into the journey and are hoping for a long reprieve...his regimen is currently working but we live in three-month increments. Hoping you and Joe get some good news. Keep us posted. Sending hugs to you both.
Me too...but what a weird, fraught journey it can be. We did sort of settle into our "new normal" eventually. But it is stressful...Eric has been having some increasing back pain and his insurance has turned down 2 orders for scans b/c his PSA is not rising...do they not know that in some cases PCa can advance without a rising PSA?🙄 Or that back pain can be a skeletal issue from ADT? Sheesh.
I have been known to send links, bring hard copies, and call our docs and insurance co with information about studies, etc., confirming what you noted above.
At one point, when I shared something with the present oncologist, he seemed surprised by was grateful that I’d shared it with him. Not always the case, of course!
Yep, we will do what we need to do to see this through and see that he gets the diagnostics needed. It was his pcp that ordered them (and it could just be old athletic injuries acting up). Will be seeing his oncologist in early July and will talk to her. He's unfortunately on an Advantage Medicare plan - and have found out since that Advantage is swell until you really get sick. Meanwhile, you hang in there and keep us posted. We're out here!😊
Hi, HikerWife. It will be useful to keep a running treatment log in Eric's bio. Has Eric had a DEXA scan? This is an inexpensive image (<$200 out of pocket, usually) that can establish general bone density conditions. It doesn't have to be through the MO, it can be through your PCP.,
Yes, PCa can advance w/o increase in PSA, but extremely unlikely if Eric is still castrate-sensitive. However, I get it. Learning to live with the constant company of cancer and the persistent doubt/angst/paranoia of whether I should be doing something about it has made me the "rule-out" king. If I start seeing a specific sign/symptom that may be cancer related, but has other common causes, I start to systematically rule out these so that I can logically "force" my oncologists to do their part - they need a reason to pursue those scans or tests, and I give them that reason, i.e., "Hey, doc, it wasn't X, Y, or Z!" My PCP is the best advocate for this.
Oncologists live in a very specific world with very specific triggers for action. If you truly believe something may be going on, build your case. Good luck! - Joe M.
Thanks for the good input, Joe. It was our pcp that ordered the two scans (yup, Eric has had a recent DEXA - doing really well, much to our delight). He is a lifelong athlete (b-ball, h.s. football, running), so has had a lot of wear & tear. So really, the back pain could be anything. He's seeing his oncologist in early July for 3 month visit & ADT, so our plan is to talk to her and see what she can do. We'll do what we need to do to see this through. (Meanwhile - we aren't super-happy that Eric chose an Advantage Medicare insurance plan - now he's stuck.)
Ha! I can relate to your husband, i.e., an ex-jock with a lot of orthopedic, uh, uncertainty (?). The "degenerative change" comment now routinely peppers the scan commentary about different parts of my spine. Sorry to hear about AM insurance - luckily, my wife still works and I have Cigna and a great oncology team to speak insurance. I have been denied some small things (like the type of radiation therapy beam), but they've been good.
Sorry to read of your distress, Cateydid - you are a formidable and admirable force of advocacy for Joe! But advocacy can take its toll in doubt and weariness. True to form, you did the right thing: You reached out, if just to hear a few supportive voices.
Keep yourself healthy, lady! You are doing great! - Joe M.
Thank you so much for the support. I just signed us up with a local Cancer Care Center here in town, and look forward to support from palliative care, too. I have been his person since the diagnosis in 2009. We’re celebrating 10 years of marriage on July 5th.
I want to demonstrate my love and commitment to him through loving service, but not self-sacrifice.
Extremely well said, Cateydid. Although you would demur, I know you have sacrificed. It is indeed time to get the occasional breather. Congratulations on your anniversary - yours is certainly a marriage of loving service. - jm
Thanks for your comment. I've only been treated for 9 months or so with ADT (Firmagon, Zytiga for awhile and Casodex at the moment), but I am also suffering from "increasing pain in left hip and thigh" I had a PSMA test last month, but it only mentioned 'sclerosis in hip consistent with treatment'. My oncologist hasn't been very concerned, but I'm going to ask him to order a different scan this week. I'm not sure what kind of scan is best, since we know cancer is in the bone but the recent PSMA didn't show any significant growth. I would like to know how your husband's situation gets addressed/resolved. Thanks again for sharing and may the Lord bless you.
See Catey did hit send. It's a good idea to use us as friends and to sound out to us. We know the feeling of the new normal... and it sucks. Everyone needs someone(s) to talk to and to sometimes cry to and sometimes to scream to. You have us ready, willing and able.
Now for my opinion about a 6 hour drive up north. If I were Joseph and had to drive there forth and back, I would rent the biggest most comfortable vehicle and lay down and sleep both ways. Of course you can stop periodically for nourishments and bio breaks (necking breaks not permitted). It will be a joy to see all of your offspring and their offspring so take plenty of pictures. So as they say in French, If you ever need someone to talk to, just ring my bell....
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Update and thank you! 
Axumin PET scan denied by Blue Shield
PSMA PET scan
Starting Chemo & Immunotherapy this week
PSMA PET Scan????
