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Prostate Cancer Surgery or Radiation (Read 5801 times)
bobkeenan
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Prostate Cancer Surgery or Radiation
09/14/14 at 09:37:27
 
Was just diagnosed with early stage T1C prostate cancer..... Just what I needed with my Masto.  Anybody have to deal with this yet on top of systemic MAsto?  Looking for protocols, tips, experience, advice.  I am leaning towards surgery.  i had laproscopic surgery to remove my gallbladder a few years ago and had no masto event through out the treatment.  A couple of issues with surgery is that they will prescribe Toridal ( NSAID) post op.  I know I cannot take ibuprofin without a masto event but I can take large amounts of aspirin.  Also they like to have me on a hormone, Lupron, for a while post op.  side affects of that include flushing and hot flashes.   that sounds like a masto trigger to me.  any thoughts or experiences?
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sarahkay1111
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Re: Prostate Cancer Surgery or Radiation
Reply #1 - 09/22/14 at 11:19:35
 
Hi Bob,

I'm so sorry to hear that you are dealing with a cancer diagnosis too.  I hope you are doing okay.   It's really good that they caught it early!  I have taken care of many men after they have a prostatectomy, and they do really well from what I've seen.  If you can't take Ibuprofen, I would ask them if they will give you aspirin instead.  Toradol is like a super ibuprofen that they give intravenously.  Both ibuprofen and aspirin can increase bleeding, so they should be flexible with you.  I'm not familiar with Lupron--I don't think any of the men I took care of needed to take it...  Did you look it up and ask why they want you on it?  I just know I only take what I have to with this disease.  If it helps, I was on birth control pills for 2 years with this disease, and did fine with them.  Good luck with everything Bob--Sarah
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Joan
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Re: Prostate Cancer Surgery or Radiation
Reply #2 - 10/01/14 at 16:02:43
 
Hope you are doing well.  Tramadol is a pain medicine that is usually okay for masto patients.  I've had Fentanyl, too, and didn't have any problem.  It's always a good idea to test meds before any procedure if the medicine can be obtained in a small amount.  A lot of meds can be cut or broken into smaller pieces or obtained in smaller dosages for a trial.  For people who get anaphylaxis or other major reactions, trials might best be done at the hospital or in the doctor's office.
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Joan
 
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bobkeenan
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Radiation it is!
Reply #3 - 11/21/14 at 06:27:32
 
After a lot of reading and discussions with my Docs I chose Radiation.  To be specific 43 treatments of IMRT  Image Guided Radiation Therapy.  I made that choice after talking to a respected surgeon in this area and having to explain what Mastocytosis is.  He said that he would do the surgery but that I "should seriously consider radiation".... I think I scared him although I probably would have been ok as I had had surgery 5 years ok and was ok.  

Anyhow.... I am on treatment 19 out of 43 right now.  Symptoms are burning when I pee.  But not after.  And lots of BM's.  I think the latter is a problem for my Masto.  I have noticed when I was first diagnosed that the Mast was causing  repeated BM's leading to D.  And resulting flushing.   Since getting on the right rigime of antihistamines and mast cell stabilizers I got that under control and became a 1 BM a day guy.   Well I think the radiation is irritating my colon and causing the multiple BM's.  That in turn is making my MASTO less stable and in the 2nd week of radiation I was flushing.   So I was afraid that I would have to go on prednisone for the next 7 weeks..... yuck.  But my allergist let me increase the ketotifin and hydroxizine and that keeps it in check as long as I take it easy.   Avoid stress, loud busy environment, heat.  I could all of those things before the radiation and on less meds...... but not for the next 5 weeks.

I will write another update in a few weeks and then after I am done.
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bobkeenan
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Re: Prostate Cancer Surgery or Radiation
Reply #4 - 12/15/14 at 17:42:04
 
70% , 30 down and 13 to go.  And for any of you with Prostate cancer, pls know that radiation does have Masto risk.  Last weekend I had an attack.   For me that is flushing, shivers, uncontrolled vomiting and very low blood pressure.  That got me to the ER and then ICU for a day and then the main hospital for another day.  At the hospital they needed about 200mg of prednisone and another steroid to get me through it all.  I am now down to 60mg a day.  i want to keep ramping down but my allergist may want to keep me at that level till I am done.
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bobkeenan
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Re: Prostate Cancer Surgery or Radiation
Reply #5 - 01/02/15 at 11:21:23
 
Continued the ramp down on the prednisione.  My radiation oncologist gave me a 10 day break.  So everything went back to normal and I started the radiation again.  About another week and a half into the restarted radiation I noticed that I was flairing again.  So I have put myself back on the prednisone starting at 60mg and will slowly ramp it down over 2 weeks when it will be a few days after all the radiation.  The prednisone seems to keep the flairing in check pretty well.

Oh and now 38 done with 5 to go, 88% done.  I will be done a week from today!!!
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Lisa
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Re: Prostate Cancer Surgery or Radiation
Reply #6 - 01/03/15 at 04:53:57
 
Hi Bob!   I´m really sorry you´re having to go through all of this!  I´m sorry for all it does to you in triggering the masto as well!  It´s hard to have to go through what I call the Double Whammy!  Sad

Bob, perhaps you want to up your meds to 3 times daily to compensate for the extra reaction the chemo is creating.  Many of us have to do this when we go through an illness and this may help to keep you from needing the prednisone!   I would also keep them at high doses for several weeks following for it´s going to take a bit for your body to heal from the chemo.  

I´m rooting for you Bob!  You´re STRONG, you can and will get through this!!!!

Lisa
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Don´t forget, there is so much more to life than being sick!
 
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