Treatment Options HER2+, Bilateral Lymph Node Involvement

blndee74

I was diagnosed with a 9CM HER2+ tumor in January.  At the time I was diagnosed, I wasn't really given options- I was told that I needed 6 chemotherapy treatments (TCH + Perjeta), followed by a double mastectomy with the lymph nodes being removed on both sides.  All of this was to be followed by 6 weeks of radiation, plus 11 solitary Herceptin treatments. My tumor responded very well to the chemo, and in an ultrasound done 2 weeks ago, there was no evidence of cancer on the lymph nodes either.  They can't even see the tumor on the ultrasound.  I had a PET done last Friday, and am still waiting to see what that showed- but my surgeon thinks it's also going to show "all clear".  

My question is this, is there anyone here who had a similar diagnosis, with similar treatment who did not opt for radiation?  I have talked with several people who are in the same situation, and they were given the option of radiation or not.  I'm wondering why my physicians didn't present this as an option for me.  I have a lot of concerns about radiation- mainly the long term effects on heart, bones, nervous system.  Frankly, I am 95% sure that I am not going to have radiation.  I think I would feel better about taking a healthier course of action following my mastectomy and reconstruction rather than destroying my body more than what I have already done.  I am only 39 years old, and don't wish to spend the rest of my life cancer free, but treating the side effects of chemo and radiation.  

RebzAmy

Hi Bindee74 - obviously I'm no expert, just somebody else who's had a similar diagnosis to you.  When I was told my treatment plan, I remember researching the different components of the treatment:  The chemo to treat the whole body and mop up any cells that may have escaped into the blood stream before they 'seeded' themselves elsewhere outside of the breast area.  The mastectomy & lymph node removal to completely remove the whole diseased area plus anything that cannot be evidenced by us human beings, followed by radiotherapy to treat an exact location i.e. the area itself, followed by possible other areas that could be affected such as collar bone area and surroudning area, to kill off anything that could possibly still be left behind and could cause a recurrence in the area of the lump and/or the affected lymph node area.  Followed by Herceptin for a year.  I would not have foregone any of those elements of the treatment.  Being HER2+ is serious stuff and you need to throw everything you can at it.  Sounds like your treatment has worked really really well which is amazing BUT still - i know that I the treatment I had was the best they could give me and all the elements were the belts and braces of that treatment - I didn't want to look back years later and think, I wish I'd done it.  Just my thoughts on it though.  Hope this helps.

RebzAmy

Pbrain

Bindee, I'm relatively similar to you with diagnosis, but no node involvement.  I had radiation because I had a lumpectomy.  They like to do radiation with a mastectomy because they can treat the nodes (they treated mine even though the lymph node dissection was clear) and also they'll do it if the tumor was close to the chest wall.  This gives them reassurance that while they removed the breast tissue, they are also treating any stray cell that might be left behind, even just one.

I did not have a hard time with radiation at all.  It was just an inconvenience pretty much.  The group that treated me was fantastic and fun to see every day.  I rarely had to wait more than 5 minutes for my turn in the nuking room, and I had very little issues with skin--just a really dark booby for awhile.  Kind of like I'd hit the Bahamas and only worn half of my bikini top.