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S1216 Clinical Trial- I have decided to go ahead with radiation to ward off gynecomastia

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Posted 1/30/2014 7:14 PM (GMT 0)
Well my meeting this morning with the RO to discuss radiation to prevent MOOB growth went well.

Apparently he had done some homework prior to out meeting (NICE!) and we talked about Luprron - Casodex -TAK700 and Moob growth. He felt that Lupron was less likely to cause it, Casodex was the most likely, and there was some evidence that TAK700 could cause, but not as much.

I asked about the risks involved with the procedure and he answered that I might be having something done to prevent something that may never happen.

He went on the say that other risks were the possibility of a slight skin irritation to the nipple area and surrounding tissue, but this would pass quickly.

Further, he said that this radiation MAY cause a secondary cancer in 10-15 years.

It was all I could do to keep from laughing. As it was my smile got so big it caused him to pause. I asked him if he knew why I was smiling and before he could answer his PA spoke up and told him it sounded like he was telling me that I would have to worry about that in 10-15 years, even with my scenario.

At that point we all stopped talking and just sat there laughing. I told him I would take that risk and I looked forward to having another cancer to deal with when I am 75-80 years old. Yeah, right!! That part of the conversation was a lot of fun.

So here is how it goes; they will schedule me for a simulation early next week and then follow up in the next day or 2 with the radiation. The radiation is 3 successive days and targets the breast buds that lie just below the nipple area.

He said it was important to do this BEFORE I started the drugs. So the appointment to start the drugs will probably be moved back a week or so.

Bottom line is that if Sonya wants boobs, she may have to wear falsies.

You folks have a great "Bonus Day",

Sonny

Post Edited (Sonny3) : 1/31/2014 6:30:54 PM (GMT-7)

Posted 1/30/2014 9:33 PM (GMT 0)
The RO's office just called and they would like me to come in tomorrow for the simulation. Seems like there is a hurry to stick that needle in my arse, doesn't it?

So I will go over tomorrow. Most likely they will be ready to radiate on Monday or Tuesday, so I should get it all done in the week.

Sonny
Posted 1/30/2014 11:04 PM (GMT 0)
Breast buds?????
Posted 1/31/2014 1:57 AM (GMT 0)
Have you considered tamoxifen? Here's a link to a thread where we discussed this last July:
www.healingwell.com/community/default.aspx?f=35&m=2795901

A ways down the thread, Tall Allen posted a couple links talking about the effectiveness of tamoxifen.

My MO was pretty neutral about it, saying she thought the risk in my case was so low that it wasn't worth the added side effects. Same thing for the radiation treatment option according to my RO. I didn't do anything about it, and so far no apparent development after 8 months on ADT2.
Posted 1/31/2014 5:16 AM (GMT 0)
Sonny,
Femera works pretty well in stopping breast enlargement. I took it for 9 months without any side effects when I was taking Casodex.
Posted 1/31/2014 6:06 AM (GMT 0)
falsies are better anyway - you could get different sizes for different occasions and you'd have a much wider selection of dress and tops you could buy.

Andrew
Posted 1/31/2014 7:20 AM (GMT 0)
Before starting ADT did some researches on gynecomastia and on ways to tackle it. Radiation was worrisome because of the cancer scares. Medications seemed more natural. In any case I did nothing to prevent it and after a few months on ADT I saw my boobs growing. Not to the extent to be compared to a woman’s, but now on vacations from Eligard those fatty volumes disappeared totally, starting from 6-months since the end of drug’s effectiveness.
Gynecomastia is related to estrogens so the medications used to avoid G, are in fact anti-estrogens used to treat breast cancer. It seems that the low T in our bodies is substituted by estrogens in certain system functions. Lowering it may treat G but at the prejudice of other health issues.


wink
Posted 1/31/2014 11:09 PM (GMT 0)
I successfully went through the simulation today and am all marked up and ready to begin the radiation treatment. I will have 3 treatments, Wed-Fri next week.

I want to thank all of you for your responses and input on alternatives.

But I have selected to go this route for a couple of different reasons. Most importantly, this will be one side effect of HT that I will not have to worry about developing. We all have very little control in this battle with Pca. We certainly have no control over how any of the effects of any of the treatments will enter our lives. At the very least this is one that I have control over and should not give any more thought too.

So much of the trepidation about going on HT is the unknown of which of the side effects will hit us and how hard. Is it going to do the job and how much will our QoL suffer. No doubt there are many of the SEs that hit us on the physical level, but I also see that the mental part plays a very important part in maintaining QoL. I just want to minimize the mental concerns as much as possible.

Another reason for my taking this route is the likely hood that once I begin HT, it will be for the rest of my life. This trial with these drugs, while voluntary, has no parameters built into it for Intermittent HT. The only way to take a break is to quit the trial. If the drugs are working, there is no reason to quit. Only if they are not working or the SEs become too much do you quit or get booted from the trial.

The alternative methods to deal with gynecomastia all have their own ills and SEs. This route has only two and I confirmed them once again today with the RO. The possibility of skin irritation and sensitivity or the long term (10-15 yrs) possibility of developing secondary cancer. For me the living 10-15 years and having to deal with that isn't such a terrible thought. At least I will have lived another 10-15 years. Where I am today, I would think that to be a really long shot. I am not being a fatalist or doomsayer, I am just talking from a point of logical fact.

So I will get this part done and enter into the world of HT on Tuesday, Feb 11th to begin the next chapter of my life.

Thanks again for the input,

Sonny

Post Edited (Sonny3) : 1/31/2014 6:32:02 PM (GMT-7)

Posted 2/1/2014 12:28 PM (GMT 0)
Great reasoning. The very low risk of radiation induced secondary cancer 10-15 years from seems to be the least of your worries. And for a guy in Florida, what's a little mild sunburn on the chest? Looks like you are all in and ready to go.
Posted 2/1/2014 2:15 PM (GMT 0)
Thanks Jack. I am still filled with a little trepidation about this whole journey, but I am ready to get started. Starting "another" new normal at 65 may be a little uncomfortable, as I like very much the normal of my life today.

But I also enjoy very much looking at the grass from the "blade side" too.

Sonny
Posted 2/1/2014 3:28 PM (GMT 0)
My wife commented at the start of all my treatments that I seemed more worried about the side effects of HT than about the cancer itself.

She was right! As it turns out, the treatments so far seem effective, though I (we) live daily with the HT side effects.
Posted 2/1/2014 10:04 PM (GMT 0)
Connie has a wonderful way of expressing the clarity of the situation.

Personally I have tried to downplay the side effects of my treatment as I have watched my wife go through two bouts of breast cancer with very aggressive life changing treatments each time. Compared to what she has endured my hot flashes and weight gain are nothing. On the treatment side, I am so thankful that my treatment has arrested the cancer for now.

The trouble with the three am hot flash that awakens me in a sweat is that it gives me pause to wonder how effective the treatment really will be. Of course only time will tell. For now we keep things in perspective and understand that a martini at about six in the evening is a very important part of life.
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