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triple negative and radiation therapy

sagefire
Posts: 4
Joined: Sep 2012

Today was my last round of chemo. Both my surgeon and oncologist want me to have radiation therapy, have had a double mastectomy. I had two sentinal nodes with cancer, none in the axilary area.  I am scared to have radiation as everyone I've know who has had it done ended up with damage to another body part.  I'm trying to find some non-biased information. Would like to hear what your experience was like if you have had rads.

Did finally agree to meet with the rad. dept and  have appt. set Dec. 31. 

Any suggestions on good questions to ask .

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

My IDC was triple negative and I did have radiation.  I had chemo, lumpectomy with clear nodes, and radiation, so not the same situation as you.  I was told that having the radiation after a lumpectomy gave the same cure rate as having a mastectomy.  So, in your case, that would be one question to ask as to why your MO and BS are wanting you to have it.  Maybe because Triple Neg has a tendency to recur and even a mastectomy does not get all the breast tissue, but that's just my guess.  My radiation oncologist told me I would not see any effects for at least 2 or 3 weeks (I was scheduled for 6 weeks of treatment.)  The very first afternoon, I was pink and warm and that freaked me out.  I guess it happens in a small percentage of cases, and I would have liked to have been warned of that possibility.  It did not get proportianately worse with time.  Just showing up every week day. parking, getting undressed and dressed was the worse part of it.  I was pretty scared the first day, but I got more comfortable with it as time went by.  I hope you get satisfactory answers to your questions--in fact, you should insist on them.

Good luck!

Angie

faith_trust_and_a_little_bit_of_chemotherapy's picture
faith_trust_and...
Posts: 299
Joined: Jun 2010

I, too, was TN...had a mastectomy, chemotherapy, and radiation.  

I paid attention to my physician's advice and had little to no side effects.  I was counseled regarding food, supplements, skin care, and even deodorant.  The most difficult aspect for me was the tattoo poke (frankly, I had less than a half dozen marks and I still wonder why anyone would have more for art's sake)  Radiation treatments were quicker than the process of driving over, waiting, getting undressed, climbing up, climbing back down, getting re-dressed, and heading back home.  My radiologists scheduled weekly appointments to evaluate skin, fatigue, and any other concerns before treatments. 

I planned my sessions in the late afternoons after I was done with the day's activities.  I did not bother wearing more than an over-sized sweatshirt.  I would come home, shower and slather on Aquaphor over the damp skin and again don an over-sized sweatshirt to sleep in.  I did not burn, I felt no discomfort...all of which made me wonder if I was getting it right.  Although I was a bit 'pink' by the end of the process, my skin, a little over two years later, looks the same as it always has, and with the exception of the surgical scar, it is as soft and supple as ever.  

I am of Irish descent and have a fair complexion, having had my share of sunburns over the years, I was concerned about the process initially, but I weathered that storm.

Best wishes. 

smalldoggroomer's picture
smalldoggroomer
Posts: 1181
Joined: May 2010

I agree with Angie, Ask a lot of questions. And get your answers. I was not tn but had right side mastectomy chemo and rads 36 . I was burnt pretty bad.  It wasn't a good experience for me. But I don't think that is the norm. I went every day got undress laid on the table usually with nothing over me. I don't know why it had to be like that. I would have appreciated a little more privacy. My Dr turned it up high she wanted to be aggressive and also used a bolas to make it stronger, I did find out later that she wasn't even licensed in my state. So check on your Dr's Ask questions until your satisfied. Its your body. I do believe rads help. If used right. It gave me higher chances of non recurrence that is why I did it. I had to change Dr half way through though. And the new Dr  turned it down and removed the bolas. Said I never needed that because I had clean margins after surgery. Good luck to you. Your in my prayers Darlin

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

Radiation was a piece of cake for me after chemo!  All I remember is a very mild sunburn.  If you are fair, make sure that you ask about skin care options.  Otherwise, I bet you'll do fine.

 

 

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Rads are not easy, but, doable.  I've never had any problems after having them at all.  I have no tan lines or anything else since.  I felt good about having them as they kill any stray cancer cells. 

 

Good luck, Lex

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I had 44 rounds of rads and went twice a day, morning and afternoon.  Yes, all the going and coming every day can be tedious, but I felt it was worth it to give me the best chance to beat the cancer (triple neg inflammatory BC).

Like Angie, I turned pink on the very first day.  But I never got worse than very red, that was with the boosters at the end.  I do have tan lines now.  The worst side effect for me was fatigue.  You might have permanent hair loss under your arm.  But rads overall was much easier than chemo.

I also had whole brain radiation this summer.  That was just once a day for 15 days.  Yes, I lost my hair again.

If you decide to do the rads, ask the doc about the skin care routine/recommendations.   When my chest was radiated I used aloe and aquaphor or eucerin daily lotion (no sunscreen).  When I did the brain rads, the doc recommended calendula.  I had no skin issues until two weeks after treatment, and then it was minor.  Be sure to ask exactly where to apply any lotions/ointments...how high up your neck? in the underarm? how low on the belly?

I hope this helps.  Please know that whatever you decide, we will support you.  Good luck in making your decision.

Hugs,

Linda

 

 

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

ok here is how I understand Triple Negative bc.  It is a very aggressive cancer.  Once a node is discovered to have cancer in it, the lymph system and its nodes are a like a pipeline for cancer to spread to the rest of the body.  That is why you need chemo to go all over your body and beat up the cancer cells.  It may also be able to recurr locally (in the breast or chest area).  I suspect this has something to do with the type of tripple negative cancer cells they find when doing your pathology report.  There are at least two kinds of tnbc cells (and maybe more).  They seem to have some characteristics that will make them further categorized in the future studies.   

I had two positive lymph nodes and a tumor that was 6.6 cm at it's largest dimension.  I had radiation from late September through just before Thanksgiving, so if I remember right that was 33 rounds.  I did not burn until the last 8 or so rounds.  It was bearable but of course not fun.  I got financial help from my church to offset the gasoline costs because I already drove 60 miles round trip to work and because treatment was everyday.  I wore all white t shirts and no bra because I did not have to look like a beauty queen at work.  The reason white shirts next to the skin are reccomended is that any other color will tend to attract more heat back to the burned area.  White will not do that.    I just wanted to beat tnbc's butt so I took all the reccomended treatments.  When understanding how aggressive it was I wanted to give it the dickens even though my research on tnbc from reputable sources, stated that I had several factors in my favor.  Most people will not do the research but since I am the benefit carrier for my family I needed to know what I was up against.  Hope my post gives you enough information do decide about radiation without making you more worried than you were already. 

linpsu's picture
linpsu
Posts: 725
Joined: Mar 2010

I too am triple negative.  I had a left-side mastectomy with no radiation or chemo, but it returned two years later under my mastectomy scar so I had chemo, more surgery (one positive lymph node), then radiation.  Radiation was not bad at all for me compared to chemo; however towards the end I did burn pretty badly and blistered.  But I am fair-skinned, blue-eyed, and freckle and burn easily, so I sort of expected that type of reaction.  I had special cold compresses that stuck to my skin that my radiation nurse provided, and that helped to relieve the discomfort. And they gave me lots of special lotion as a preventative measure as well.  I wore a man's tee-shirt when I wasn't working, and when I was working I wore my camisole from the surgery so I could go without a bra and could stuff a puffie in the one pocket so I wasn't lopsided.

Linda

jnl's picture
jnl
Posts: 3873
Joined: May 2009

How did your appointment go?

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

I had chemo and bi lateral but was told that radiation would not be a benefit to me...not sure why this is, maybe because I had no lymph involvement and the chemo took my tumor almost completely away..I had a few sporadic pieces left that my BC said was similar to the choc chips on a cookie and that when they took the breast they took the whole cookie. My concern is is the threat of reoccurrence since it is triple negative and very aggressive. MO seems a little reserved to say we got it all and BS is like WHOOPIE we killed that beast..I don't know who to believe!

Sandy

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Wondering if you decided to do rads and if you did go ahead with them, how you are doing.  Post an update for us when you have some time.

 

Hugs, Lex

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