Living with Prostate Cancer: Meet others & introduce yourself

Diagnosed in 2018 with grade 2b. I’ve seen several urologists at Mayo in Jacksonville who were great doctors. I have had the HOLEP procedure for BPH which helped me immensely. I recently had another MRI to determine the next move as far as treatment. PSA is 13.5 as of yesterday. I will have a consultation tomorrow. Since my prostate is smaller now, the urologist I’m seeing now suggests having HIFU when the time comes for treatment. I’m totally against any radiation treatment. Anybody out there ever had HIFU treatment and if so, what facility did you use?

Hi, Kevin! Thank you for your insight. Yes, I understand that almost everyone has those side effects - I was checking different sites before , trying to get an answer. Radiologist never mentioned that side effects can be so severe. His last and final injection of Eligard was 10 month ago. Overall he had a short - term ADT and that is completed. I am wondering that 10 month after last Eligard and last radiation 10 month ago, all the side effects are so severe.
Diet and exercise is very important, but he is not there - he is talking about doing it but does not have plans to do that. Every morning for him is a struggle : he feels nauseated and feels better after 5 cups of coffee and 15 minutes in the bathroom. Since operation he complains that the feeling inside like something is wrong, something is damaged.
Before this all his heart was good, he is a pilot, so, he was checked every half a year. A few month ago I took him to Emergency and he stayed in a hospital, coming out with one more diagnosis : A-fib. Yes, he is under cardiologist's care, too 🙂 . Oh, yes , bone pain - bone scan=all norm. Colonoscopia - all norm. The only thing in his blood test is so so: hemoglobin. None of all the doctors he is seeing ( endocrin.,primary care, cardiol.,.dermatologist ( he had a skin cancer 10 years ago and then 6 years ago), sleep apnea specialist.( life long sleep apnea). OMG! A lot to handle for him and...me 🙂

Semeon, you may be interested in these related discussions that @jonbuuck started:
- Length of Lupron effects after treatment concludes https://connect.mayoclinic.org/discussion/length-of-lupton-effects-after-treatment-concludes/
- ADT how long post Radical Prostatectomy & Radiation Therapy? https://connect.mayoclinic.org/discussion/post-radical-prostatectomy-and-adjuvant-radiation-therapy/

I live in Canada and I have been on Lupron for 3 years following FLA in 2014 and 2018. I am encountering most of the side effects and see my Dr in a week as I I want to take a break from Lupron. Has anyone in the group been on Lupron for an extended period of time?

Hi @baibaelizabete, welcome to the Prostate Cancer group. I can see you are concerned about the side effects of treatment that your husband is experiencing. It also sounds like you miss him, too. How are YOU doing?

The side affects you describe of his surgery, ADT, and radiation sound about "normal." Some of them such as weight, muscle, can be addressed through diet and exercise.
Your medical team should be able to discuss with him ways of mitigating the hot flashes, notice I did not say eliminate.
If he is not seeing a cardiologist, consider adding one to your medical team given the known cardio vascular side affects of ADT.
If he is still on ADT, consider asking your oncologist or urologist about intermittent ADT. It may be possible to stop, actively monitor and then restart treatment based on clinical data such as increasing PSA, imaging...
As to the sexual side affects, particularly from non nerve sparing side and ADT, well known and a challenge gto reinvent intimacy.

Kevin

My husband is 74, was diagnosed stage 3a prostate cancer, had radical prostatectomy in December 13, 2019, ADT and 40 days of radiation and life was never the same since.
Fatigue all the time,
absence of energy,
hot flashes now more then before and more severe ( his testosterone level is 0. Yes, you read correctly ZERO, instead of 300-1000)
night sweats,
weight gain,
loss of muscle mass,
pain from the waist down,
100% incontinence,
change in bowel movement,
atrial fibrillation due to lack of testosterone,
hmm, what did I forget? Oh, about sexual functions doctor warned in advance that he can not spare the nerves. So, penile shrinkage for sure and no sexual desire whatsoever. His PSA was undetectable a half a year ago.
I think what makes him going is his government job, he works from home, 5 days a week from home office. Afternoon is spent in his big chair watching TV and checking stock market. He does not want to go for walks. And I am not talking about long walks. I take him in a car to places ( he still likes shopping :). ) The pandemic did it's job, we were isolated , masked, very careful not to bring some infection home and that paid off - so far so good.
Thank you for accepting me in the group.

Yes on the MRI. 3T to be done annually. PSA is twice yearly.

Thank you for the reply.

Having a similar, but more recent PSA and biopsy result. Mayo said that active surveillance consisted of PSA twice per year and MRI annually. Have you had MRI as well?

Diagnosed 09/15/2019
Age - 65
5 of 12 cores showed positive. One core was high volume, >50%
Gleason 6 in all cores
Genomic test showed low risk to very low risk for aggressive cancer
Chose Active Surveillance
Last PSA was 5.8...(one year earlier was 4.8) been an ebb and flow for past several years with the 5.8 being a spike.
Next PSA assessment in a week. 6 month follow up with urologist at that time. All DRE to date have been negative.

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