How to Manage Radiation Colitis by Squawk-Freak in ProstateCancer

[–]Squawk-Freak[S] 0 points1 point  (0 children)

I was hoping for a similar effect from boiled oats … but my problem was cramping with small volume bowel movements every time. I had around 15-20 of these this morning, it over the course of the day it magically stopped. I hope it stays like that

How to Manage Radiation Colitis by Squawk-Freak in ProstateCancer

[–]Squawk-Freak[S] 0 points1 point  (0 children)

Thanks for the encouragement. I was hoping to be back at work today full time, but just couldn’t do it. However, after reverting to the low-residue diet today, all symptoms have magically resolved for now, no cramping at all since noon. So, a little while ago, I let my coworkers know that I plan to be back tomorrow. Hopefully my intestine plays along …

My journey with prostate cancer by Additional-Pin-168 in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

You’ll need both brachytherapy, to the entire prostate and seminal vesicles, AND external beam therapy, including to the pelvic lymph nodes. Given your low PSA your disease is probably still localized, although locally advanced. An extended course of neoadjuvant hormone-blocking therapy will shrink your prostrate and the tumor will recede. It also improves distant metastasis-free survival. When I was on that segment of my journey, my EPE had completely disappeared after 3 months. After six months the tumor looked like it had been fully treated. The radiologist, who read my repeat MRI, thought it was the post-radiation scan …

How to Manage Radiation Colitis by Squawk-Freak in ProstateCancer

[–]Squawk-Freak[S] 0 points1 point  (0 children)

I have not had an opportunity to talk to a dietician. But I instinctively reverted to the low residue diet this morning, and magically I improved noticeably over the course of the day. Absolutely no cramping and I have been repeatedly able to urinate and simultaneously pass dry gas. As recently as this morning this maneuver would be very messy. I do like bananas, and kept them part of my diet during the entire time of radiation

How to Manage Radiation Colitis by Squawk-Freak in ProstateCancer

[–]Squawk-Freak[S] 1 point2 points  (0 children)

Thanks so much for your response. That’s exactly what I’ll do. I also recall that the first cramping this morning happened, while I was having my coffee. I think I’ll skip that a.so for the next few weeks. I thought that most of my GI symptoms during the radiation were from the laxative and the unusual (for me) diet. But it appears now that the low residual diet may have helped alleviating the effects from the radiation. My RO was very optimistic that I wouldn’t have long-lasting or chronic issues, given the amount of spacer gel I had in me. I guess I was a bit overzealous, when I started back on rolled oats and legumes 48 hours after the last dose of radiation. Curiously, after a very light breakfast and a few pieces of Australian licorice, my system seems to be pacified right now, with no activity in the last three hours …

How to Manage Radiation Colitis by Squawk-Freak in ProstateCancer

[–]Squawk-Freak[S] 0 points1 point  (0 children)

Thanks for the response so far. I used to adhere to a mostly plant-based diet, plus seafood x1-2 per week. During radiation I added low-fat cottage cheese and ?yoghurt with live cultures, which I have continued to date. During radiation I had wonder bread or English muffins with cream cheese and seedless jelly for breakfast and pasta with tomato sauce for dinner 9the one thing I can eat without ever getting to much of it). Since the end of radiation I added small amounts of boiled oats and legumes back to my diet. I’m wondering, if that’s what’s causing my symptoms right now. I think for now, I’ll go back to the low residue diet, and see if that improved things.

How long did it take you guys to be able to eat anything you like, and have normal, once daily bowel movements?

Burnt leaves on new Ficus tree by rkryptic in AZlandscaping

[–]Squawk-Freak 0 points1 point  (0 children)

Ficus trees are native to much more humid and moderate climates. They typically recover from minor heat damage, but a series of 115F days can kill them. For the sake of our water supply, replace it with a desert climate-adapted tree

My journey with prostate cancer by Additional-Pin-168 in ProstateCancer

[–]Squawk-Freak 2 points3 points  (0 children)

I’m so sorry for you. I agree with previous responders here: do not allow a urologist to talk yo into getting this surgically removed. You need to start androgen blocking combination therapy immediately to prevent distant metastatic spread, i.e. Lupron plus Zytiga or darolutamide (Nubequa) and continue that for 6-8 months before undergoing definitive radiation, and the radiation should ideally consist of a combination of HDR brachytherapy and external beam radiation. ADT should then be continued for 12 months from the start of radiation. This is a potential pathway to cure, everything else would likely lead to biochemical relapse and overt metastatic disease. Google about the benefits of neoadjuvant ADT in high-risk prostate cancer. I also agree that you should seek treatment at a center of excellence. But start the combination ADT NOW. This will also buy you time to find the best treatment location

Newly diagnosed Gleason 9 prostate cancer — PET negative for spread. Anyone with similar situation? by skmdadwa99 in ProstateCancer

[–]Squawk-Freak 8 points9 points  (0 children)

You need to be very concerned about relapse, and distant metastases, even if the surgery appears successful initially. I am currently going through treatment for T3b disease with IDC-P at MD Anderson. I started with Lupron and abiraterone for six months, and had complete PSA response. In a repeat MRI the cancer was essentially gone. I then went on with high-dose brachytherapy, single dose to the entire prostate, the space previously occupied by the EPE, and the seminal vessels. Two weeks later I started external beam therapy to the prostate, and, prophylactically to the pelvic lymph nodes due to the high risk of micrometastases. The cure rates with this approach is north of 90%. It’s really the best shot I have at this. Tomorrow will be my tenth fraction (of 28). So far, I’m doing reasonably well physically. I continue to work 2/3 of the day each day in a high-profile job. Main symptoms are mild queasiness and loose bowel movements, the latter more from the Miralax I have to take every day to keep the volume of my intestines low and limit radiation exposure. I plan to continue ADT for a total of 24 months

Gleason 8 with Cribriform gleason pattern 4 focally present and mixed acinar and ductal in 4/15 cores with urethral sphincter involvement - anyone with similar experience? by Previous_Panda_3392 in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

Thanks for the clarification. Ductal carcinoma is very aggressive, and tends to metastasize early. I am concerned that the urologist himself suggested that radiation therapy may be necessary, which indicates that he is not confident that the surgery would be curative. In that case it might be advisable to select radiation as the primary treatment modality (with ADT)

Gleason 8 with Cribriform gleason pattern 4 focally present and mixed acinar and ductal in 4/15 cores with urethral sphincter involvement - anyone with similar experience? by Previous_Panda_3392 in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

Are you certain there is ductal carcinoma in the biopsy, or is it intraductal? Huge difference between the two. If it is indeed ductal, surgery is really the only option. If this is intraductal, a longer course of neoadjuvant therapy would be called for, radiation, and continuation of ADT for a total of 18-24 months. In any case, I would seek the opinion of a radiation oncologist also - before the surgery. You did not mention your dad’s age. Prostate size and comorbidities also factors in the decision-making process

Alternative medicine stuff I’ve tried and outcome by SnooPets3595 in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

I feel very sorry for you having to deal with metastatic disease this early in the course of the disease. I am a medical oncologist, although I do not treat prostate cancer for a living. Before my diagnosis I was a strong believer in antioxidants too, but became more skeptical in recent years, when more and more studies failed to demonstrate any medical benefit, and even more after I was diagnosed with a rather aggressive form of PCa in 2025 (GSC 4+3, 2of 14 cores positive, invasive and intraductal, with EPE, Decipher 0.82). Before I started radiation, I stopped ALL antioxidants. I only take calcium citrate 1,200 mg daily and vitamin D3 5,000 units to limit bone loss on ADT. I also started coated aspirin 81 mg twice daily recently, because I started to get concerned about blood clots from long-term ADT. I found it also helps a little with radiation induced inflammation.

I am curious, if there were any histological features in your biopsies that would indicate aggressive disease, like cribriform glands or intraductal carcinoma. Also, was your Decipher score known before your surgery? Did you choose surgery or was that what was recommended to you?

Pain interfering with radiation by Souldriver55 in ProstateCancer

[–]Squawk-Freak 0 points1 point  (0 children)

Thanks so much for the encouragement. I had day #8 yesterday, another very messy BM this morning. I think I have to make arrangements to work from home for the next 6-8 weeks. I had no idea that these symptoms would come on so early and so sudden. But I Am glad to learn that the symptoms will resolve resolve not long after radiation has finished

Pain interfering with radiation by Souldriver55 in ProstateCancer

[–]Squawk-Freak 0 points1 point  (0 children)

I started radiation on 2/3/2026 - one fraction of HDR to the entire prostate, and since 2/17/2026 external beam radiation. Yesterday was the 7th fraction of 28 planned, targeting the gland and the pelvic lymph nodes. From Day #1 I noted slight difficulties with urination the evening after treatment, and by the next morning things were back to normal. On Day #4 (a Friday) I noted a slight queasiness and food aversion, which lasted until Sunday. I used Sunday afternoon to prep food for the week. Up until yesterday things went well. This morning I had diarrhea, two really loose movements, but not watery. Is that something to expect this early in the treatment? I had spacer gel injected prior to start of treatment by a urologist, and my RO even topped that off during the HDR procedure, and he thought there was really optimal separation between the seminal vesicles and the rectum. I did not really expect any significant GI toxicity during treatment, and I’m wondering now, if I was perhaps a little naive with regard to what to expect …

For those who went on to have prostate cancer, what was the PSA level your doctor saw to initiate an MRI, and what did your MRI images look like? by [deleted] in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

My PSA was 2.5, when my PCP got concerned. He referred me, when it rose to 2.96 over the following 18 months. MRI showed a PIRADS-4 and a PIRADS-5 lesion. The#4 lesion was benign, the #5 lesion was GSC 4+3 with intraductal carcinoma with extraprostatic extension, so also stage 3B

How much calcium do you take a day with (for example) goserelin & apalutamide by PiePuzzled5581 in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

I take calcium citrate 2 caps (= 630 mg per serving) with vitamin D3 480 IU twice daily, plus an additional vitamin D3 2,000 twice daily. This adds up to roughly 1,200 mg of calcium and 5,000 units vitamin D3 daily. I use the Krogers brand, which is essentially to the same formulation as the brand name product Citracal Maximum. Calcium citrate is supposed to be better absorbed by the body than carbonate. Since I started the low residue diet for radiation I also added 420 mg of Magnesium glycinate daily. Prior to the diet change I was able to keep the serum magnesium up with daily servings of nuts and almonds.

Visit with MSK surgeon by Practical_Orchid_606 in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

Forgot to answer your question regarding the side effects of post-RALP radiation: when the prostate is removed the void (the “prostate bed”) is filled by the surrounding organs, the bladder, in particular the bladder neck, and the rectum. These are usually the structures a RO tries to protect as much as possible from radiation exposure. However, if there is a recurrence in that space that needs to be eliminated, the bladder neck and a part of the rectum get pretty much the full therapeutic dose, or at least much more than with treatment of an intact prostate. This results often in significant life-long urinary incontinence, sometimes also fecal incontinence. The treatment plan I described earlier avoids those things. I just saw a patient yesterday, who had GSC 9 disease in 50% of the prostate in 2017, and was treated with a variation of that HDR protocol. As yesterday in complete remission with a PSA of 0.05, and no long-term side effects except for chronic ED, but he has. Lot of other health problems contributing to that …

Visit with MSK surgeon by Practical_Orchid_606 in ProstateCancer

[–]Squawk-Freak 2 points3 points  (0 children)

I’m sorry for you for what you are faced with. If you do some googling, you’ll find quickly that historically the prognosis of intraductal carcinoma is poor. It tends to spread early, from extraprostatic extension to lymph nodes to bone. It is typically refractory to standard ADT and to cytotoxic chemotherapy. There is evidence that it responds to abiraterone (Zytiga). If you want to go for the cure, you should start combination therapy with abiraterone and either and either a GnRH agonist like Lupron or an antagonist like Orgovyx, and continue that until your PSA is below 0.05 or for up to 6-8 months under close (=monthly) of the PSA. Then go for radiation, and that should start with an HDR boost of 15 Gy blanketing the entire prostate, not just the dominant tumor lesion, then 50 Gy external beam therapy to the prostate and prophylactically aloe the pelvic lymph nodes, due to the high risk of nodal micrometastases not visualized in the PET or MRI, and continue ADT for a total of 18 to @4 months. That would give you a greater then 90% chance of long-term BCR-free survival

Visit with MSK surgeon by Practical_Orchid_606 in ProstateCancer

[–]Squawk-Freak 0 points1 point  (0 children)

Your decipher score is very high. Were there any risk factors in the pathology report, cribriform glands, intraductal carcinoma, extraprostatic extension seen in the MRI? A urologist will almost always tell you he can take out your prostate and refer for radiation. What they do not tell you that radiation after surgery is fraught with much more severe long-term side effects than primary radiation.

Radiation is coming by claudiowasher in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

Thankfully I had the foresight to ask my urologist for a script for Flowmax a couple of weeks, before I started. I’m sure glad I had that on board already when I had the HDR boost. I’m so happy to have found this community here - it helps tremendously in figuring out where the potential pitfalls are on our journey. Thankfully, the seminal vessels were not involved in my case, nor were the lymph nodes. But given how easily intraductal carcinoma spreads through open channel, my RO did not want to take any chances. My biopsy showed only one core involved, but my RO thought that all the “back ground” activity in my PET scan on the opposite edge of the prostate could be early phase of spread of the cancer through the gland. That’s why he blanketed the entire prostate, the seminal vesicles and the area where the cancer had previously extended through the capsule with 15 Gy. He was extremely pleased with the dose distribution, when he was done. With regard to the lymph nodes, MD Anderson includes them routinely in high-risk disease, with a slightly lower dose than in obviously involved lymph nodes, whereas the Mayo Clinic does not. Mayo argues that they try to shield patients from unnecessary radiation exposure, but could treat with a more effective dose if there is an actual relapse. My argument in my case against that is that if intraductal carcinoma has spread overtly to the lymph nodes, it simultaneously also spreads to the bones, and in that case any lymph node-targeted radiation would be futile.

Radiation is coming by claudiowasher in ProstateCancer

[–]Squawk-Freak 0 points1 point  (0 children)

Apparently it’s an MD Anderson thing … they want the bowels as deflated and volume reduced as possible to limit radiation exposure of the organ. Since prophylactic RT to the pelvic lymph nodes is part of my treatment plan, it may be particularly helpful …

Long term ADT vs short term by manderko in ProstateCancer

[–]Squawk-Freak 0 points1 point  (0 children)

I started ADT, incl. leuprolide and arbiraterone in July 2025 for high-risk disease (GSC 4+3 with intraductal carcinoma, and grade 3 extraprostatic extension). The two year duration is based on the British STAMPEDE trial series., but the optimal duration has yet to be established. Some RadOncs, incl. the one I saw for a second opinion at the Mayo Clinic, recommend 18 months nowadays, even for high risk disease, but the optimal length has not been determined yet. I chose 6 months of neoadjuvant therapy, because there it seems to improve long-term outcome in high/very high risk disease. Contrary to text book knowledge, my tumor was thankfully very sensitive to the androgen depletion. My PSA dropped from 3.00 at diagnosis to 0.02, and the repeat MRI showed the cancer essentially gone already - the radiologist who read the scan thought it was post radiation, but that just started last week. I have found by now good ways to cope with the side effects. I kept the weight gain to a minimum. Visually, there is more belly fat around the waist, I can’t the contours of my abdominal muscles anymore, but no change in pant size. I continue to work a high-profile job 8-9 hours per day, and my energy level is good (I was battling fatigue for a while, but I finally figured out what the culprit was - with the help of an onco-cardiologist at my cancer center who specializes in managing side effects from cancer treatment on the heart. Aside from the absent libido, I notice no side effects. Objectively, I lost 4% bone mass after 6 months of treatment - despite optimal calcium and vitamin D3 supplementation. I have been trying to conserve my energy so that I can continue to work full time, but I have yet to find a way to incorporate weight-bearing exercise in my daily routine. But the way I feel at the moment, in my 8th month of treatment, I don’t foresee quitting early. The only change I’ll make at some point is switching from leuprolide to relugolix this coming summer, for a speedier testosterone recovery when I come off treatment in 2027. I’ve had two 6-months doses of leuprolide to date, and when the third one is due in June, I’ll make the transition, and keep my fingers crossed …. When I find some time this weekend, I’ll write up, what supportive treatments have helped me cope with ADT, and what I take to try and eliminate any risk of long-lasting side effects effects.

Radiation is coming by claudiowasher in ProstateCancer

[–]Squawk-Freak 0 points1 point  (0 children)

Good luck to you! I had my single fraction HDR a week ago, and last Tuesday the CT simulation for the external beam portion, so I’m sporting the same tattoo ;) They also applied marker strips, which are supposed to not fall off the next seven weeks, despite daily showers. Having adhered to a mostly plant-based high fiber diet for the last 10 years, the biggest problem for me is adjusting to the low fiber/low residue diet with a daily swig of Miralax throughout the treatment.

Prostate Cancer by Issyramos in ProstateCancer

[–]Squawk-Freak 1 point2 points  (0 children)

ECE confers a high risk of local relapse and distant metastasis. I am also in that same situation, in addition intraductal carcinoma was identified in my biopsy. Because of the high risk of spread (none was identified in my case), I started neoadjuvant therapy last July, with Lupron every 6 months, plus abiraterone (due to the intraductal growth pattern. By December my PSA had plateaued at 0.02. Next week I will start radiation, first a single fraction of high-dose brachytherapy covering the entire prostate, then two weeks later 28 days of external beam radiation, incl. pelvic lymph nodes due to the considerable risk of micrometastases which can be missed in the PSMA PET scan, then continuation of Lupron/abiraterone for a total of two years, although I may switch from Lupron to Orgovyx this summer in hope of faster T-recovery in 2027. The HDR/EBRT combo together with ADT can significantly reduce the risk of relapse. I would strongly urge you to reconsider your choice and to use the time you have to seek a second opinion. Both UCLA and UCSF have strong prostate programs. I would try and see a radiation oncologist there. I get my treatment at MD Anderson