Husband's next PET scan is in a month... - Advanced Prostate...

Advanced Prostate Cancer

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Husband's next PET scan is in a month. I am getting worried. Advise?

AnnaViktoria profile image
16 Replies

Happy Holidays to All of you! I have been reading for a while and this is my first time posting. Wishing you all feel well, loved and happy today and every day! As much as I want to be joyful, I am worried. Husband has non-PSA producing cancer negative for neuroendocrine markers according to his MO (more is in the bio). He completed 6 cycles of Docetaxel in the beginning of October. His last PET scan was in the end of October. PET scan showed good response to the triple therapy treatment. The tumor shrunk and there was a decrease in metastasis activity.. At the same time, PET scan showed the risk of pathological fracture of left acetabulum. Orthopedic surgeon says he can't do anything surgical in this area. DEXA scan shows osteopenia with T score of -1.5 at left femur neck. MO was considering bisphosphonate therapy but my husband has a lot of dental problems, so he is very hesitant. My concern is that he has recently being complaining on left groin pain. He says it feels a pressure like sensation but I see that it is getting worse: he definitely feels discomfort when gets up , climb stairs, change position. He starts limping , then it goes away as he walks, then comes back again. Next PET scan is in the end of January following up with the next MO visit. I do not know what bothers him the bone pain or the tumor. Any thoughts? Should we wait till the end of January or should ask to see his MO earlier? Will appreciate any thoughts, comments, suggestions. Thank you!

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AnnaViktoria
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16 Replies
Tall_Allen profile image
Tall_Allen

Which PET scan is he getting? Sometimes low-PSA subtypes also don't express much PSMA. Maybe an ordinary FDG PET/CT might be more informative?

He might respond to more intensive chemo like cabazitaxel + carboplatin + etoposide?

Did he get edema in his leg with the pain in his groin? It may be an enlarged lymph node.

AnnaViktoria profile image
AnnaViktoria in reply toTall_Allen

Thank you, Tall_Allen for responding! Husband gets PET/CT scan. His MO believes it is better since non PSA producing cancer. I do not think he gets edema in his leg .. I am thinking if we should try to rush the next scan and the doctors visit?. He was diagnosed in May and it was horrible: catheters, bowl movement problems, couldn't even sit, had constant fatigue . Since he started triplet therapy, his condition improved considerably. His white and red blood cells counts has both been low but otherwise he has been doing better. This left groin pain makes me worried... MO told us that Docetaxel can be not more than 10 cycles, she mentioned cabazitaxel as possible next step. Should we rush the scan to see what is going on and maybe resume chemo?

Tall_Allen profile image
Tall_Allen in reply toAnnaViktoria

I'm asking you what kind of PET/CT scan? There are several different kinds: PSMA, FDG, Axium, and NaF18.

AnnaViktoria profile image
AnnaViktoria in reply toTall_Allen

Fluorine -18 FDG PET/CT scan

podsart profile image
podsart in reply toTall_Allen

from my experience, pain in the groin may indicate a problem with that side's femoral head.

AnnaViktoria profile image
AnnaViktoria in reply topodsart

Thank you. I see... Think we should try to schedule next scan sooner. Will contact his MO.

j-o-h-n profile image
j-o-h-n

Greetings AnnaViktoria,

See M.O. ASAP. Nothing to lose by seeing her right now. If she says no then try to see a new one. (Pain is PAIN) BTW what's your dear Husband's age? You've come to a great site, keep posting here and Happy Holidays to all of you.

Good Luck, Good Health and Good Humor.

j-o-h-n

AnnaViktoria profile image
AnnaViktoria in reply toj-o-h-n

Thank you, J-o-h-n. He is 62. Will try to set up an appointment. Happy Holidays!

SsgCulldelight profile image
SsgCulldelight

Hi and Have Happy Holidays Every Day because your here, and so is he, that means you have a choice and a chance to improve your life quality. First step is KNOW that your healing, 2. Stay positive and tell yourself that you are well and getting better regardless of what the Doc and other clinicians say. Dis ease is 90% psychological and 10% physical manifestation, but that is in your head but it's in your head. E defeat ourselves with negative thoughts, talk and confirmation of what we believe and or convinced to believe. I know tumors , trashes, weakness and general malaise are real, but know that that's your bio chemistry making adjustments corrections and augmentation to offset attack and destroy cells that have mutated and continue to multiply. They don't multiply as fast as the healthy killer cells do. I know it's depressing and makes you anxious, but you have control of your mind, and the mind and spirit Trek the body what to do. Trek your cells to turn off disease or more accurately imbalance And to turn on balance and repsir. Positive affirmation and reinforcement works, it's very real and effective. I know this helps, try it please and research a much as you can about it. Cheers.

AnnaViktoria profile image
AnnaViktoria in reply toSsgCulldelight

Thank you, SsgCulldelight, for "nothing is more powerful than me" suggestion! I believe in it (theoretically) , practically at each and every moment I need to work on it. Feel well. Cheers!

SsgCulldelight profile image
SsgCulldelight

Hey sorry deleted ur reply by accident please resend so I can respond

kiteND profile image
kiteND

Has he ever had a PSMA and, if so, did it show anything? Or, has his PSA every been above non-detectable, even if low? The reason I ask is because I am one of those who has long had nondetectable PSA and very low PSA when I was first diagnosed as Stage 4, but my PSMA scans show mets. If he has expressed PSA at all in the past, a PSMA scan might be appropriate.

AnnaViktoria profile image
AnnaViktoria in reply tokiteND

Thank you, KiteND! He never had a PSMA, only Fluorine -18 FDG PET/CT. PSA was about 3. 45 when he was diagnosed with stage 4 with a lot of mets in pelvic, and also mets in bones and lungs. MO says PET/CT will show better than PSMA.

billyboy3 profile image
billyboy3

get him on pain meds, as much as he needs as NO quality of life if one is in pain. You have to be realistic as well as advanced prostate cancer keeps destroying us no matter what steps are taken.

Noname1960 profile image
Noname1960

I would get the PET scan as soon as possible. I had Gleeson 9 prostate cancer in 2017 and it was only in 3 of the 12 biopsies so they said that it was caught early enough that it probably hadn't spread yet. My son-in-law is a certified first assist that lives on the west coast and he said I should come out here and have the surgery because one of the doctors he worked with was the best he had ever seen and took 2-3 hours longer than the doctors he worked with. He did my surgery in less than a month after it was discovered and he took all of the lymph nods in the system and it was already in 19 of the 22 he took out when he removed my prostate. My PSA was not detectable for a little over a year and then it started rising and I had to have 40 radiation treatments and a PET scan to to make sure it was under control and it was. I have had to have PSA tests ever 3 months since to make sure it didn't come back and my cancer doctor said he didn't even want my PSA to get to 0.1 even though normal for my age is 3-4 not 0 .1 but because a Gleeson 9 is so aggressive he didn't even want it to be normal since i no longer had a prostate. well guess what a little over 30 day ago it was 0.167 and he wanted it checked again in 30 days and it was 0.185 so I have to have PET scan and see him in the next few days to see what we do now. As long as we stay on top of it I will live to be a older man. So I would advise you to get the PET scan as soon as possible before it is to late. I don't mean to worry you more but if my wife hadn't kept after me to see a doctor in 2017 I probably would not be alive and still working in our business today. We also believe in God and in 2008 when the economy was bad we started donating 1/2 of a percent of our gross sales back to the church plus our normal tithe and the reps that called on us could not believe that our business continued to thrive and we kept increasing the percentage until we are now donating 2% plus our tithe and last year it was over $66,000. So put your faith in the Lord and he will take care of you and yours.

AnnaViktoria profile image
AnnaViktoria in reply toNoname1960

Thank you for the response. I see that we need doctor appointment and a scan earlier. Working on it.

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