Change of Plans after Genetic testing

BeGinagain22

Hi All,

My surgeon called today and confirmed that I am a mutant. I have the RAD51c mutation. She is recommending my lumpectomy on 03/18 should be traded for BMX. She also said that I should have a Hysterectomy once the BC is dealt with. I understand the increased risk and all. My head is just spinning. I had gotten myself mentally prepared for what I thought was to come and now I am just a little shell shocked

ParakeetsRule

Hello, fellow mutant! (I have the Pik3 mutation) Sudden treatment changes are common unfortunately. Give yourself time to adjust and maybe do some research if that's helpful. If you still aren't comfortable with the treatment plan, you can always get a second opinion!

I was all set to take one drug, I'd read all about it and talked to other people taking it, and it seemed great and then boom...next appointment my oncologist said "you're a mutant and I'm changing your treatment". Now I'm taking a drug that targets cancer with the Pik3 mutation and it's working great!

BeGinagain22

Thanks PR, I will mull it all over. I always suspected I was the love child of one of the XMen, lol. If you found a targeted treatment, that is great

1982M

I'm sorry your going through this. I was diagnosed with a PALB2 variant of unknown significance and I was all over the place. Ultimately I decided to still have a lumpectomy.

Have you spoken with a genetics councillor? A surgeon, although highly intelligent, doesn't specialize in genetics. Not all genetic variants have the same risks. If you really don't want a bilateral mastectomy annual MRI's are sometime advisable. I don't know a lot about RAD15C but maybe genetic counselling before mastectomy could help you understand what the chances of recurrence or a contralateral breast cancer is with this specific mutation? Explore all your options?

That being said- a double mastectomy is also a very reasonable choice with or without a gene mutation. I struggle wondering if I just should have had a double mastectomy.

Again, so sorry your going through this. Best of luck with treatment.

SarahMaude

I'm so sorry to hear this! From a lumpectomy to BMx for an 11mm tumor. Freaking not fair. Knowing ahead of time about the genetic testing results does provide helpful information in the long run, but right now I can absolutely imagine how you are feeling. My treatment plan also keeps getting bounced around, and I know too well that constant feeling of being knocked off course again.

Big cyber hugs to you. We're within a week of each others' diagnosis date, and neither of us has had surgery yet. I'm not getting any genetic testing due to no family history and me being 8 years past menopause. That won't change my plans, but so many other things have and probably will. If nothing else, know you aren't the only one in this boat. And YOU are not a mutant, there is just a mutation hitching a ride in you, and you are figuring out how to throw its effect overboard. Why do I keep thinking of pirates and pinball these days?

BeGinagain22

Sarahmaude,

That made me snort, I laughed so hard.. Pirates and Pinball!! Love the analogy and I completely get it. I am ok with the BMX, especially with the genetic information now. I know I already have a higher chance of breast cancer in the future because I have already successfully grown one bouncing baby tumor. I would like to take away the chance of a future primary breast cancer, I know that a reoccurrence somewhere else is not out of the question though. My blood work shows that I am post menopausal. I have had a Mirena for the last 8 years, so I wouldn't know either way. I don't appear to be using any of that female plumbing anymore, so I am not unhappy about that either. It's just mentally getting ready for a bigger surgery and a second. I had my friends and family all calmed down and ready for me to get rid of Lurch (the lump). Now I am having to fast talk to explain, that my cancer is no worse, we are just beefing up security. Cyber hugs right back at you!

SarahMaude

Beginagain,

Your attitude is great. Let's kick these ugly babies out, and hopefully by this time be in the post surgery phase of survivorship together.

BeGinagain22

Amen to that sister, ready to crush it!

ParakeetsRule

Haha. I actually like thinking of myself as a mutant! I just need to figure out what my special powers are. Generating unnecessary lung fluid? Regrowing hair? Looking totally normal with Stage IV cancer? Making my oncologist laugh? Taming anti-social dogs?

BeGinagain22

PR,

maybe it’s a mutant thing. I am good with difficult dogs too. I happen to have one of them and he certainly has my heart. I guess my superpowers are dark humor, inappropriate commentary and award winning awkwardness. It’s better than ok to be a little different. It’s required.