Triple Negative and Radiation after Mastectomy?

Deniset717 · March 2013

Has anyone chose to not have radiation after chemo? I had triple negative with no lymphnode involvement. Had a mastectomy and I am nearly finished chemo but then they want to do radiation. I have read so many negative things about radiation and so nervous about it so was wondering if anyone was in similar situation chosing not to have it???

Thank you!!!!!

Denise

stride · March 2013

I hesitated about doing rads. Really wanted to be done with treatment. But I knew someone who had a reccurence in her mastectomy area. That's "knew," past tense, if you get my drift.

lmcclure4477 · March 2013

I am not having radiation after chemo because I do not qualify for radiation after masectomy. My tumor was 1 cm, I had no cancer in lymph nodes and my margins were clear. They said I don't need it because of all of those criteria.

Luah · March 2013

Hi Denise: You will find more on this recent thread. http://community.breastcancer.org/forum/72/topic/800172?page=1#idx_24

minxie · March 2013

I didn't do rads and ended up with a local recurrence 3.5 years later. No one can say if it would have made a difference, but I wish I had done it then.

lmcclure4477 · March 2013

What if your doctor says you don't qualify for radiation? I am stage 1A no node involvement and clear margins. They won't do radiation for me because of all of those statistics.

Luah · March 2013

With any treatment, it's a matter of weighing risks and potential rewards. Radiation is not benign -- there can be complications and long-term side effects. In very early stage BC with low recurrence risk, a doctor may not feel rads are worth it. Always ask plenty of questions, research, probe and follow your best instincts.

Lolalee · March 2013

Your doctors have recommended radiotherapy so there must be a reason for this.

I had a choice between lumpectomy and radiotherapy or mastectomy without radiation. I was concerned about long term damage especially as it was the left side involved.

Radiotherapy is not without problems. According to my RX they are careful about giving it to young women as it can have repercussions years later. You need to ask your doctors about the benefits versus the risks.

grover · March 2013

Denise, My radiologist recommended RT for my tnbc bc i had 1 lymph node involved & bc of being 43 (at least that's considered young...looking on any bright side I can!). Personally, as hard as this all is, I just want to unload the whole arsenal on this cancer!

Luah, I really respect your knowledgeable posts! As a relative "newbie"here, I'm sometimes overwhelmed with info, & I feel like I'm getting addicted to this site! But You often sound like the voice of reason:) We are lucky to have you here.

Anonymous · March 2013

Hello my fellow fighters! I will try to make this short. I am having a hard time deciding whether to get radiation or not. I had been told all along by the surgeon & medical oncologist that it would not be recommended. After surgery & chemo, my med oncol said I was cancer free & good to go (I was so happy!) Then I saw a radiologist and he recommended it. I got a second opinion at a University Hosp, in which they recommended radiation, plus more chemo! They are suggesting Adriamycin now too. I am discouraged. I thought I was done with treatments. I watched my Mom go through bad side-effects from chemo & rad and the rad eventually led to esophageal cancer & her heart failing. I want to live, but I want to have a good quality of life too. I also have chronic fatigue syndrome, which does not help. I don't know if the risks of the side-effects are worth the reward of rad possibly helping. I also have 3 cousins who have had BC. I don't know if they were triple-neg though. It recurred in 2 of the 3. It looks like you ladies have had different types of chemo than I did. Any suggestions or opinions?

placid44 · March 2013

MtnGrl,

I am also triple negative with one positive node. I had to get radiation because I did not have an axillary dissection. I don't know whether you need it or not, but I know it is supposed to reduce local recurrence. It seems that some triple negatives have a local recurrence that then spreads.

I believe in aggressive treatment, so would say yes to radiation. As to adriamyacin, people react differently. Some don't have problems; some do. It is thought to be harder than taxotere, in general. Not sure how it compares with cytoxin because I had A and C together. I can tell you that I had a very, very hard time with adriamyacin and I did not have any chronic conditions/was healthy. It seems it could be hard on someone with chronic fatigue syndrome. Then again, I had dose dense. Maybe doing them further apart would be easier. My medical oncologist was very good at managing my reactions and side effects so I could stay on schedule. That's key.

netty46 · March 2013

Hi placid. Have you met many women here who had local recurrence that spread? Been looking for them but maybe came across 2 the others just recurred in rest of the body . I have been looking since almost a year on this site. I have written to like 7 that don't sign on much but ironically they answered me and they are doing fine so far.

placid44 · April 2013

Netty,

I haven't met women on the site who had a recurrence that spread. But my radiation oncologist said she had seen it happen. A triple negative I talked to on the phone said she knew TNBCs who got mastectomy on only one aside and had a recurrence on the other side that spread. And my MO said I should gt BMX with radiation. Not sure whether that was based on patients she had had or what. My mother was hormone positive, got UMX for a stage 1 tumor IDC, then got ILC in the other breast, stage 3C, 27 nodes positive. She has done well on femara, but I don't have that option.

I know the medical advice varies, and it is a personal decision. A lot of this for me is personal.

netty46 · April 2013

Hi placid

My radiation oncologist said yes it does but mostly to those who recur early and those who had hard time getting Complete pathological response the first time. They were against a BMX. It says if it comes back they are finding it's better to have breast to come back to rather than anywhere else. Don't place so much emphasis on the triple negative. Breast cancer is breast cancer. I lived 12 yrs not even thinking of TN it was unheard of when i first got it. I have spent many hours reading stories on this site and have come across more er/pr positives and Her2 positives who recur more. Breast cancer is breast cancer too me. How is your mom doing? Did you mean she had 27 positive nodes?

netty46 · April 2013

I had no nodes involved and did radiation.

placid44 · April 2013

Yes, with my mom, 27 nodes were positive...

netty46 · April 2013

Placid wow 27 your mom is a survivor. God bless her and you.

netty46 · April 2013

Placid are you brac positive since your mom had cancer?

kathleenhutson · April 2013

I was diagnosed triple negative in Sept. 2011. No lymphnode involvement. 3 Lumpectomies with University Hospital in Cleveland with no clean margin.( Oct. '11, Nov. '11, Jan '12) Lost confidence in surgeon with University and went to Cleveland Clinic with pioneer doctor Joseph Crowe. Dr. Andreson, oncologist, suggested to do chemo then decide direction for surgery. Started chemo in Feb. '12. Finished Chemo May 15, 2012. Masectomy on right side, with nipple and skin saving procedure. Dr. Andreson suggested no radiation because nothing to radiate, cancer is gone. Expander placed for 4 months for breast implant. September implant in. Beautiful job. October, implant out because infection. Replaced implant. Jan. 30, 2013, back in hospital with infection of implant. Implant out Feb. 2, 2013. Still have nipple and skin. Will revisit option of fat grafting, (Liposuction transfering) with plastic surgeon this week. My original tumor was on the right breast right at the rib cage. Mammogram could NOT detect the cancer. Only the ultra sound detected it.

Happy I did not do the radiation. I am on a regiman of Metformin. Metformin is Diabetes and has a side effect off assisting tumors from NOT growing. As your doc about it.

The worst part of the whole journey was what the chemo did to my digestive system. Was difficult to swallow and my colon/rectum was torn up by the chemo. Most excruciating pain of it all and all my life. I have a Colorectal Doc. Dr. Masssarat Zutshi, with Cleveland Clinic. Had surgery June 6, 2012 to repair my rectum. Botoxed my sphinter, stitched fissures. With regard to my rectum, healing is progressing. I now have more good days than bad days. If this problem starts with you, start using the Nitro-glycerin 0.4, small pea size around your anus. It will reach the affected area. Not too much...the Nitro sauve will basal you out, make you faint, if use too much, since in will make your blood pressure plummet.

I have always had a lot of energy. The chemo has seemed to suck my energy and is taking a long time to recoup. Also, the chemo has caused pain in my joints. However, all, a very small price to pay to live without cancer.

Call me anytime if you want to talk. I will talk about anything with you. No subject is taboo. I continued to work during this all. Took off the weeks of chemo and surgeries. I had 9 surgeries in a year. Work kept me sane and helped my mind from wonderin to the darkside:)

330-690-8742--God Bless- Kathleen Hutson- Tallmadge, Ohio

netty46 · April 2013

Kathleen do you know if metformin trial is in Florida?

kathleenhutson · April 2013

Metformin is used for people with Diabetes..not a trial. You have to be careful since it is a sugar regulator. I take 1000 mg tablet in the morning. One at night. And the beauty of this med, since it's a Diabetic medicine, it is free or discounted at your pharmacy...

There's a new trial with taking the copper out of the body in Triple Negative Cancer persons. (copper-reducing drug tetrathiomolybdate, or TM) This is brand new. Joseph Baar is the doc from University Hospital that has been doing trials on PARP Inhibitors. He indicates hope in this copper reducing drug.

http://www.cleveland.com/healthfit/index.ssf/2013/03/copper_depletion_shows_early_s.html

Keep the faith...we are closing in on the best drug for this nasty disease.

Call me anytime...I will answer anything you want to know...Kathleen

330-690-8742

Jen78 · April 2013

Netty - I believe there are ongoing trials using metformin as a possible drug to reduce recurrence. If you go to the thread about clinical trials and research, you'll find a thread there specific to the metformin trial. I believe the dosage they are using is 850 mg twice a day. I took the research to my doctor and he gave it to me off label saying that it couldn't hurt. So, I'm taking the drug now, but am not part of the trial.

Anonymous · April 2013

If you got radiation after mastectomy, where did they radiate you? I had 1 dr recommend the chest wall, axillary area & clavicular nodes. The other recommended the chest wall, clavicular nodes & boost to the scars (she said since i had a dissection, there were fewer axillary nodes & they didn't want to damage the area further & make lymphedema more likely). I'm worried about the scar boost for my reconstruction. Thanks!

CLYDAY · April 2013

I am 32 years old and going through the difficult process of figuring out if I need radiation or not. I have triple-negative with two tumors in my left breast (1.2CM and 0.8CM). They suspected some lymph node involvement and my treatment plan was 4 bi-weekly Dose Dense AC and 12 weekly Taxol. The scans prior to my surgery after chemo treatment showed that the masses were gone. I just had a double mastectomy with nipple sparing this past Wednesday. The pathology report revealed that the lymph node was negative, and the surgeon also said the pathology showed that no residual cancer cells were left in the breast tissue that was removed. Before surgery my Oncologist stated he felt if the lymph nodes happened to be negative that radiation would not be necessary. The Radiation Oncologist, Surgeon and Plastic Surgeon all felt that I would require radiation, but they were assuming the lymph node would show positive. I had my surgery at a University hospital and my is local. I asked the University to forward the pathology to my Oncologist. I have an appointment with the surgeon and Radiation Oncologist in 2 weeks. I suspect my primary Oncologist will say I don’t need radiation, but I am not sure what the Radiation Oncologist will recommend. I am looking for facts and suggestions so that I will be prepared to ask questions and make the right decision. I will proceed with radiation if it 100% will increase my life and chances of reoccurrence but don’t want to do it just because it MIGHT help. Thank you so much in advance.

Luah · April 2013

Clyday: Sorry you are dealing with this. I always found the decisions I had to make regarding treatment were as terrifying as the cancer. With the right information, however, I'm sure you'll come to the right conclusion. You are doing well to get lots of opinions.

You may want to look at this, and go to the original sources for the studies: http://latestbreastcancer.blogspot.ca/2011/08/importance-of-radiation-for-triple.html Ask your docs to make their recommendations, and ask on what basis they are making them. Ask them for research studies.

By the way, your complete pathological response to neoadjuvent chemo is a very good omen!

kianich · April 2013

Hi Clyday,

I am 45 yrs old and triple negative as well. I just had my double mastectomy with tissue expanders 3 weeks ago and as soon as I have the all clear from the plastic surgeon I will be having rads for sure. I have a consultation on April 16th. I am definitely having rads because I had an 8 cm tumor in my right breast (left breast was prophylactic mastectomy). The size of my tumor is the sole reason my team has suggested rads. The way all the docs explained it to me is rads will help if there are lymph nodes involved and/or the size of the tumor. I had 1 lymph node that was positive but due to 4 bi-weekly dense dose AC and 4 bi-weekly dense dose of Taxol the lymph node was negative when I had the scan before surgery so the surgeon left them in place and my tumor was actually larger than the surgeon suspected, she thought 6-7 cm. The pathology report revealed I had clear margins and NED but personally I want to throw all I can at this nasty disease to make sure I can reduce my chances of recurrence. There are so many factors and choices for us because everyone's case is unique and the doctors have their own views on how each patient should be treated. I think if we ask the right questions and trust our docs we will make our decision for what we feel is right for us at that time. It doesn't make it right or wrong but just what is your own personal decision for whatever reason(s). I hope that your appt goes well and you find peace within yourself to make the decision. Take care.

CLYDAY · April 2013

Luah...thank you for sharing the link and the encouraging words! I am now leaning towards radaition and will see the Rad Onc next week. Kianich than you as well for sharing your experience with me. It is nice to hear what others are going thru. I agree with using anything and everything possible to prevent this disease from returning. I hope all goes well and keep me updated on radiation!

Lighttara · April 2013

I am triple negative.I have chosen to have the radiation due to risk of local recurrence.I had chemo for 16 weeks preoperatively ..I also am recovering from a bilateral mastectomy.My pathology revealed a 2.3 cm tumor and 3/8 nodes positive.I do not think I have a choice..I have to have radiation..I am tired of all of the treatment but I have two young children...I have to do what will lower my risk of recurrence..

Luah · April 2013

Lighttara: Yup, throw everything at it, and come through healthier than ever for your kids! Really, rads are not so bad...

Jenjay · May 2013

Hello all;

My mom just completed her chemotherapy, and they are suggesting rads for her triple neg.

Can anyone give us a heads-up on the side effects she may experience? I appreciate the first hand knowledge. Thanks, and good health.

Jen

netty46 · May 2013

IMCC was your tumor 1cm after chemo. Or you had surgery first?

Triple Negative and Radiation after Mastectomy?

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