Prostate Cancer Radiation with Ileostomy: Seeking Information

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bluerose157
Mar 17, 2017 12:14 am

Morning of Sept. 27/16: Early morning had abdominal pain, vomiting; this continued to get worse over morning. By early afternoon, my wife (retired R.N. for 38 yrs.) called ambulance; could see mottling in extremities; skin was cold and clammy. At hospital; blood work was elevated and lactic acid over 500. As afternoon went on, no control over diarrhea (couldn't change diapers and sheets fast enough). From tests/scans, surgeon thought to do with bowel. He didn't think would make it to morning if didn't have surgery. He thought going in, may have to do ileostomy. He couldn't save any of the colon and had to do the ileostomy. Just after getting me set up in O.R., I had cardiac arrest (I was out at this point and had no idea what was going on). Spent 5 days in ICU and a total of 3 weeks in hospital. They had sent in pathology reports, but they came back not revealing specific information as to what caused this.
Prostate cancer; everything put on hold re radiation.

Oct/16 Rheumatologist took me off the methotrexate. Now take APO-hydroxychloroquine 200mg 2x/day.

Dec. 8/16 PSA 21 saw urologist. He referred me to another urologist for his opinion. Saw him a couple weeks ago. Neither urologist wants to do surgery, given what happened in Sept./16. The second urologist suggested doing a TURP; then do the radiation treatment. The water works is very slow, but not having any burning, anything like that. To me, I would prefer not to have the TURP from what I've read about it.

I'll be having another PSA test Mar. 20 and see radiation oncologist Mar. 27 to discuss radiation with now having the ileostomy.
I've searched the internet trying to find any information about having prostate radiation with having an ileostomy. I understand that the ileostomy is an "end" stoma.

Thank you.

Bill
Mar 17, 2017 6:49 am

Hello Lloyd.

Sorry to hear about your condition and predicament. I have absolutely no experience of your problem soI did what I usually do and trawled through past posts to see if I could find anything useful - to no avail. I Googled the the problem and found your comprehensive post immediately and think that Chuck's reply was about the equivalent of what I might have contributed to the discussion, had he not done so first.  I do hope that someone on here will have had some experience of what you have been through and share their thoughts with you (AND US).

It might just be that you are the pioneer in this particular field and that you will not recieve many replies. If this is so, I hope that you will give us all feedback on how things go for you as it will surely help anyone else who is having the same trouble finding out information.

If it was me in this situation, I would be asking the surgeon's for a more detailed explanation of the reasoning in their decision making and requesting that they share their knowledge of any medical articles written on the subject so that I could explore the subject for myself.

I hope everything goes well for you, no matter what course of action is decided.

Best wishes

Bill 

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bluerose157
Mar 18, 2017 2:20 pm

Hi! Thank you for your replies.

Lloyd

bluerose157
Mar 29, 2017 5:15 pm

Hi! Back on Monday, I saw the radiation oncologist. If I had prostate cancer and no other serious problems, wouldn't be a concern of doing radiation, in my case. Now with having an ileostomy, she said it's going to be difficult; not so much in doing the actual radiation, but the side effects that could be long term. With having to empty pouch 10-15 times a day now (I empty when it gets about 1/3 full, to help stop leaks and/or whenever I go out, always make sure it's empty). She said with radiation could end up in the bathroom 25-30 times/day. Is that quality of life? Plus, there will likely be sufficient damage to the rectum area, that any chance of reversal is off the table.

She is leaning towards doing hormone therapy; less side effects. Do one injection; this doesn't cure the cancer, but slows it down for 4-5 years. The docs continue to follow with 6 mon. PSA/review.

In the meantime, she (like urologist) is concerned with PSA numbers doubled in the last year and if it has got outside the prostate. Scheduling a CT scan and bone scan to check. Then have another appointment with her.

Yesterday I ended up at ER. About 4 a.m.; started being sick, nothing coming through ileostomy. Couldn't keep anything down and was getting very dehydrated. (I am constantly thirsty) Plus not able to take my regular meds that I need to take some every 3 hrs. About 8 a.m. my wife said this is enough, going to ER, she called an ambulance. They did blood tests at the beginning; then ER doc decided to do CT scan, said there might be a chance of scar tissue blockage (had read somewhere this can happen). As you know at ERs takes time for all this to happen. By mid-afternoon, put me on IV for my meds and some fluid. By later afternoon, the ileostomy started working and nausea settled down. The scan didn't show any serious blockage. They then gave me some more IV fluid and started sipping fluid to make sure it's staying down. Back home later in the evening. I suppose just one of those things with an ileostomy.

Take care

Lloyd

Bill
Mar 30, 2017 5:31 am

Hello Lloyd.

Thanks for letting us know how you got on with the oncologist. It does sound as if she knows what she is doing and is weighing up the pros and cons of each alternative. More importantly in some ways, is the fact that she is sharing her thoughts with you so that you are aware of the decision making process. There is nothing worse than being kept in the dark about why the medics are choosing one form of treatment over another. Once they have done the CT and bone scans you will be better informed as to what the situation is and further decisions can be made from there.

I'm sorry to hear about your bout of illness and subsequent ER visit but it's good to hear that things worked out okay on that occasion. Thanks for sharing the experience as sometimes these incidents never see the light of day outside one's immediate family. People with similar problems are grateful to know what happens to their fellow sufferers and can better contemplate  the outcomes when they are known about.

Please keep in touch and let us know how things progress.

Best wishes

Bill

 
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ReneeWilliamson
Nov 30, 2017 9:39 am

I would like to wish you with all the good health and good luck for the future. I'm new here, just trying to find some answers. But I saw this and a cancer survivor I know had radiation for his prostate cancer, so it caught my attention.