When should TNs do radiation?

Hi FelineMum,

I was diagnosed around the same time as you and started rads last month. I wasn't very excited about it (I was originally diagnosed stage 2 and since I had a mastetomy we never planned on rads) but here I am. I did ask my RO about the effectiveness, and like chemo they don't really know who will respond to rads and who won't, but studies consistently show that women who have rads are less likely to have reoccurances across the board, which is why we do it. This was important to me, because my tumor did not really respond to chemo, but my RO told me response to one treatment or lack of response in my case doesn't mean radiation won't be effective.

I also asked my RO about Xeloda while getting radiation and he said no. I am being treated at MD Anderson for rads, and I really respect his opinion. He said if I asked him 18 months ago he might have been open to it, but the more recent research doesn't really show a benefit and it does increase the side effects (redness, peeling, etc.). Instead I will be starting Xeloda after I finish rads next month.

I also live in Michigan, but decided to come here for rads because I just don't want to mess around with this anymore. Where are you being treated? I went to a few places for second opinions after I found out chemo didn't work- Karmanos was open to the Xeloda. Did anyone mention lowering your dose while you are getting radiation? If I did do it at Karmanos it would not have been the normal full dose.

Wow, very interesting study. He didn't mention it, but since it started 8 years ago my guess is they have some idea of the results. I met with an integrative medicine doctor while I have been here, and she said they do send out information they find out via trials before it is published so patients can benefit from it sooner.

I am also treated at Spectrum. I had my chemo there and surgery there. I have been pretty happy, I just thought (and my MO agreed) that this cancer wasn' behaving and it might be time to call in the big guns. I am very high risk for this to come back, so I will be participating in a clinical trial at Memorial Sloan Kettering after I finish Xeloda. I was so looking forward to this being behind me.

AgathaNYC - with lumpectomy, expect 6-6 1/2 weeks of radiation.

Thanks Hopeful - I haven’t heard of this

I asked my RO about why we do a shorter radiation protocol in Canada than they typically do in the US and her response was that the American ROs get paid more if they do the extended protocol because they get paid per treatment. If that's true, it's really infuriating.

I finished my 16/16 radiation treatments yesterday. Back to the Xeloda program today.

VLH & Agatha - I'm glad that info was helpful. I know the "Canadian protocol" has been in wide use for some time in other countries. American ROs have been slower to embrace it, in part because of caution and a conservative approach to adopting new treatment protocols. I wouldn't be surprised if finances enter into it as well but I'm not sure I'd credit that as the primary reason.

Good luck to all of you with your radiation treatments. Since TN cancers are so fast growing I would think you'd get even more bang for your buck with RT than ERs but that's just an educated guess. I hope all of you sail through treatment and benefit greatly from RT.

Agatha - I'm glad you've been able to get at least some info on what to expect. The not knowing is hard, isn't it?

Four weeks including the boost sounds like the Canadian protocol - 3 weeks of 5 treatments then a boost week, for four total. The total dosage of radiation can vary (I've seen a couple of different numbers) but I think it's still a bit less than the longer course of radiation.

It's good to know that it's standard at your hospital - acceptance of this approach seems to be spreading pretty rapidly.

If you want to help your skin, you can start (if you haven't already) moisturizing your skin now, including the upper shoulder. Use something very pure and gentle and use it a.m. and p.m. Of course, you'll want to avoid any surgical scars. Babying your skin now can pay big dividends later. One of my RO nurses shared that with me early on and it certainly didn't hurt! It was a good habit to adopt and continue.

Have a good weekend!

ccmc2,

I had chemo BEFORE surgery due to the size of my tumor it was 4.8 cm...because I didn't have surgery first it was hard to grade the tumor, Oncologist said stage 2 or 3 grade 3. My first PET showed left lung node and left axillary node involvement so probly stage 3

I did not do radiation as my oncologist said with mastectomy and clear sentinal node biopsy and margins it was not necessary. I start reconstruction (expander insert on 9-24-18) I was told if I had lumpectomy I would HAVE TO DO RADIATION.....glad now I don't need it because of mastectomy.