I canceled my RP after some of you gently suggested that I get a second opinion from an RO. I will now be treated by Dr. Biagioli at the SMH Radiation Oncology Center here in Sarasota, FL. But I also had a long Zoom consultation with Dr. Pow-Sang, Chair of Uro/Gyn at the highly regarded Moffitt Center in Tampa. Despite being a surgeon himself, Pow-Sang agreed that RT is my better option. Reviewing my records, he wanted me to delay treatment until his best "readers" look at my scan images, which were all negative for metastatic disease. In addition, he sent off tissue samples from my biopsy to get a Decipher test. His hunch is that despite my "mild EPE" (per MRI) and my Gleason 3+4, my Decipher number will be low enough to warrant RT without hormones. He sees no harm in the delay, even though it could be 6 weeks from now before the Decipher test comes back. Dr. Biagioli is on board with this delay. He knows Pow-Sang, and he’s happy to have a conversation with him about my treatment. Meanwhile, he ordered another PSA, which had risen from 3.1 to 4.1 to 4.99. The new number (early February) was 5.27. He was unconcerned about this upward blip. Any thoughts about this? And do you see any downside if I were to start RT without any prior or concurrent hormones in advance of what the Decipher test will show?
Another question concerns my urination—no leakage or pain, but a lot of stopping and starting, and the stream is often quite weak (the MRI showed “mild BPH”). RO was hoping to get my stream flowing better with alpha blockers before I start radiation, especially if it turns out that hormones are indicated. First I took Tamsulosin but I stopped when it gave me bad eye irritation. Then he put me on Doxazosin, but the first 4mg dose gave me heart palpitations, dizziness, and I nearly fainted, so I quit that. He then prescribed alfuzosin, but I was afraid to take it because of some similarities to Doxazosin. What to do? Doxazosin apparently comes in a 1mg. dosage. Does it make sense to try that, maybe just before bedtime instead of after dinner, and see if I can gradually build it up to 4mg? Are there drawbacks to doing radiation when your stream is already kind of weak? In light of these issues, RO is thinking of the longer RT road—40 or 50 lower-intensity beams instead of much fewer but very high-intensity beams. Any thoughts? Thanks in advance.
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Doesn't Biagioli do high dose rate brachytherapy? - that's what I know him for.
The orthostatic hypotension is an early symptom of alpha-blockers that usually goes away after a week if you stick with it. I used silodosin. There is some weak evidence that they (especially Flivas (naftodidil)) may actually help with the prostate cancer:
Thank you for your input. Biagioli didn't think I was a good candidate for brachytherapy because of my pee issues, coupled with my initial bad reactions to alpha blockers. But I'm going to try doxazosin again by building up from smaller dosing and hope I can tolerate it. I am definitely drawn to the brachy strategy for my situation. For now, I think he sees very gradual low-intensity radiation as the best way to not aggravate my peeing.
You may want contact Dr Kishan office for a genetic (saliva) test they use to help predict urinary side effects. I was not a patient of his but they directed me to the company who sent it to me for free a few months ago..
I was very concerned about radiation as I had quite weak flow but a small,35cc, prostate. My results were moderate low risk and now 2 months after treatment I would say they were accurate. My function is petty much the same as before treatment.
I also had a cystoscopy to rule out scarring or structural problems causing the low flow.
I had MRI guided radiation in 5 doses at MSKCC I would highly recommend the MRI guided as Dr Zelefsky said at one point my prostate moved 5mm during treatment
Thank you for this. I too have a small prostate along with my pee issues. Do you remember the name/phone number of the company you called? Otherwise I'll call Kishan's office.
My husband was diagnosed with PC at 72 last July with Gleason 4+3 T1 intermediate bilateral cancer contained within the prostate. His PSA scores had gone from 5.9 to 6.6 in consecutive tests. He was told it was a slower form of cancer, but at Gleason 7 medical intervention was on the cards. His only symptom was slow flow first thing & his prostate was not enlarged.He was offered the full range of treatments but stepped away from RP as he felt it was too brutal both in treatment & side effects & had no better outcome than the other options.
After talking to all of the various medics he opted for LD Brachytherapy & had it on 11 Jan this year. He was not offered other treatment with it. He takes 1 Tamsulosin each eve with his meal. 6 weeks post implants his side effects are-tingling when he has a pee, getting up 1-3 times a night for a pee (prior he was getting up 1-2 times), some urgency when needing a pee, & occasional slow flow during the day on top of the early am pre-existing. He has had a tiny leak twice only. He had his 6 week follow up last week & the radiographer said all was going very well & to expect some possible increase in symptoms as the radiation peaks, though not necessarily. They expect the current symptoms to subside as the radiation wanes.
He reports the worst symptom in it all was that the ultrasound probe badly aggravated his haemorrhoids that had been dormant for 20 years! He was advised prior to brachytherapy to speak to his GP & has ointment & pessaries he uses occasionally.
He had delayed treatment while he took the time to carefully consider the treatment options. Everyone is different. I hope this is helpful.
Thank you for this. Why did he choose the lower dose Brachy instead of the higher dose? Because of the slow flow? I do like the prospect of the radioactive stuff being taken out in the same session it's put in.
He wasn't offered LD brachytherapy. Our specialist oncology service is county wide & world-leading on some aspects of treatment (eg RP). They make a decision as to which type is best for the patient. He was happy with 1 visit rather than 2 & isn't bothered about the permanent seeds with the prognosis of the treatment being 98% success rate. He is aware that if he does fall into the 2% that need salvage treatment & top up RT is not possible, that he would have to have RP via specialists in London. He didn't want beam RT as the side effects could be worse & he didn't want to keep returning for course of treatment.
The evidence is that RP is followed up in more than 50% of occasions by salvage treatment, so it's not done & dusted as many people think.
I chose to receive HDBT + IMRT + 2 years of ADT as my treatment for my high risk cancer. To receive the high dose brachytherapy, the patient must undergo a urine volume and velocity test. The minimum flow rate allowable is 10 ml/sec of urine. I did very poor but still passed. After the HDBT, cystitis will be exacerbated thereby making peeing that much more difficult.
My urinary issues were similar to yours. My IPSS score (21) concerned my RO. He said that an accelerated radiation schedule could onset retention. His plan was 4 months ADT to shrink the prostate and 43 1.8 Gy IMRT hits. I was on 2 Tamsulosin per day. Today, 4 months after end of radiation, my IPSS is 13 and only taking 1 Tamsulosin per day. Gather the facts, make your decision, and start your treatments. All the best to you.
Thank you for this. My IPSS is currently at 19. Since my last post, I'm still waiting for the Decipher results. Meanwhile, I decided to try Doxazosin at just 1mg, and I did tolerate it okay. Now I'm up to 2mg the last 4 days. I woke up today with a little shortness of breath, but hoping my body will adjust to increasingly higher dosages. My stream is a little stronger after 9 days. Maybe it will get more so going forward. Also just went back to my acupuncturist, who told me she's had some success strengthening the stream of guys like me, so we'll see how that goes. My best to you.
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Decision Time
Treatment Options Analysis Paralysis
Intermediate favorable vs. unfavorable Gleason 7 acc.to 2 doctors + CLEAN PSMA, do we need third opinion +where? (Green Bay/Milwaukee areas)
Treatment: Unfavorable Intermediate Risk PCA
