Treatment after Mastectomy - hormones, chemo, etc.

Snickersmom · October 2018

I had a BMX 17 months ago. My tumor was just about 5mm and no node involvement. My ER and PR were very high, so I am on Anastrozole for at least 3-5 years. As I navigate around the BC community forum, it seems like I am one of only a few who did not have any chemo or radiaton. Now I am starting to question why I didn't have either. My medical team is with a very good hospital, and my backup/second opinion is Dana Farber in Boston. I just had a nuclear bone scan and MRI and both were clean. They won't do an oncotype test because my tumor was so small. I did have genetic testing and no mutant genes were found. My brother died of IDC related to high exposure to Agent Orange. There is no other cancer of any kind in my family.

I don't know whether to bug my MO and BS again about this. They have both said that I don't need chemo or radiation because of the size and no nodes. This is making me crazy!!

Anyone else who went on hormonal therapy without radiation or chemo

Meow13 · October 2018

your brother was diagnosed with idc how did they link it to agent orange? I was exposed to agent orange as a child I was diagnosed ilc and idc over 40 years later.

Luckynumber47 · October 2018

It sounds like your drs followed all appropriate treatments. You had a very small grade one tumor which is usually very slow growing and does not respond well to chemo. If you had an Oncotype test done it likely would have shown that the harm of chemo would have way outweighed the benefits. Radiation is more often used for people who have lumpectomies or whose tumors are in difficult locations so again, not appropriate for you.

Put these worries out of your mind. Your drs did everything right. Look at my signature line. You will see I had a bigger grade 2 tumor and still no chemo or radiation.

Is it the Predict website that shows risk of recurrance based on your stats? You may find that very comforting.

Sening hugs, Lucky

Denise-G · October 2018

The grade makes a huge difference ...my mom had a 1.5 cm tumor (much larger than yours), Grade 1 - lumpectomy, no chemo, no radiation and put her on Arimidex which she was only able to take for 2 years. She is 5 years out and doing great. You had the appropriate treatment and got great advice from one of the best breast cancer hospitals in the country at Dana Farber. You were not led astray.

Lula73 · October 2018

1.2cm IDC, no node involvement, BMX with immediate DIEP recon, and anti hormonal therapy here. No chemo no rads. Keep in mind that most of the women having just rads had lumpectomy. And those on chemo and/or rads (even with mx) typically had larger tumors, node involvement, high grade, HER2+, and/or triple neg. For the size, grade, and no node involvement your treatment protocol is correct. Do not discount the effect of the anti-hormonal you take everyday for the next 5-10 years. This is one of those times where you just thank your lucky stars you were able to forego chemo and rads. 🙂

Snickersmom · October 2018

Thanks to you all for responding and making me feel so much better. I know this was all explained to me several times last year but then I would see all of the chemo and rad references and start getting nervous. I will try to just let it go. I truly am grateful that I didn't need them.

Meow - my brother served 2-1/2 tours in Vietnam at the height of the Agent Orange blitz. He was First Air Cav on the ground and was in charge of many search and destroy missions. He came home with jungle rot which never went away and terrible PTSD. Unfortunately, that was before we knew about PTSD. When he was diagnosed with breast cancer, he went to Duke (he lived in NC) and they told him that even though they could not definitively say it was caused by the extreme exposure to Agent orange, his doctors felt that it greatly contributed to the onset of bc. He had a BMX, some chemo and radiation, and then was on Tamoxifen. But he couldn't deal with the night sweats and hot flashes and stopped taking it. Less than a year later, the cancer had traveled to his lungs but he refused to do chemo again. It continued to his brain and he died about a year later.

Meow13 · October 2018

snickers, I am so sorry. I don't think my cancer was from my exposure to agent orange it happened so long ago. My Dad sprayed it without even using gloves we all inhaled it I am sure.

In 1960 there were no concerns on the chemical. My Dad used it when working for the forest service, we had experimental forests on the property.

My husband was in the Navy during the Vietnam war 6 years. He is almost deaf now, trying to get him to buy hearing aids he puts it off. He uses me as his ears.

JoyceA · October 2018

Hi Snickersmom,

We almost have the same diagnosis and treatment a year apart. My PR was 96% and ER was 95%. Oncotype was done right after surgery bc it was thought the ILC had spread to the other breast and lymph nodes. I was lucky it was DCIS in the other breast, no lymph nodes involved and a low oncotype score so no chemo. I was told I didn’t need radiation because of having a BMX. That little white pill is very potent. I was started on anastrozole before surgery to stop the tumor from growing and keep any cancer cells from spreading. My achy knees, fatigue and forgetfulness remind me but I think that’s a small price to pay to stay cancer free.

Joyce

Snickersmom · October 2018

Meow. That darned stuff was just so awful. And yet still, we put who knows what into our ground, groundwaters, and air. I worry about my granddaughters and their future children. We certainly are doing our best to kill all of us off. I knew that DDT was used extensively but I had no idea Agent Orange was used in other than Vietnam.

My husband has issues with ongoing jungle rot, pre-diabetes, and he also lost most of his hearing. If you have access to a VA facility, go have him tested. The Army/US Government paid for my husband's hearing aids and batteries, and he has never paid a dime toward any supplies, etc. He wrote a letter, documenting exactly where he served, his assignment and job, dates, etc. and submitted that to the VA. They approved him first shot. His cousin was on a carrier ship and was even worse because they had no earplugs, so he had permanent damage from the fighters landing and taking off. But he did not get approved for hearing aids right away. So he appealed and then was approved for them. So don't buy them! Go to the VA. PM me if you want more info.

Snickersmom · October 2018

Joyce - thank you! Yes, we are very close in all of our numbers. And my achy hips and forgetfulness are a small price to pay. Plus that reminds me that my little white pill is working!

Now as for the fatigue - I had BMX May 3, 2017 and I still got tired every afternoon. Sometimes I think it's just age (71) until I hear about everyone else feeling the same way. I usually can work through it but once in a while, I just have to lay down and close my eyes for a half hour.

Goldfish4884 · October 2018

Hi Snickersmom: I am pretty similar to you. Diagnosed September 2017 at age 69. My cancer is IDC 1 cm, Grade 1a, Stage 1, 0/1 lymph node (sentinel node). My options were either lumpectomy with radiation or mastectomy with no radiation, no chemo. I opted for double mastectomy & reconstruction. My onco type score is 16 which is low risk. I took Anastrozole for 8 months minimal side effects until about the seventh month, then the aching legs started so. I had a one month holiday from the pill and now am trying Letrozole, it's only been about 6 weeks on the Letrozole, but so far so good. My oncologist says 5 years on the AI's. Hoping I can tolerate the little white pill for 5 years. Sometimes I think about quality of life at my age but just trying to hang in there

JoE777 · October 2018

On Agent orange, my husband has applied to the VA for a disability for diabetes based on his exposure to agent orange on the DMZ in South Korea. Waiting their dicision. Two friends applied because of hearing loss on aircraft carriers. One is receiving all he needs the other is in the process

Snickersmom · October 2018

The original plan for me was a lumpectomy and radiation, but there were two other suspicious little guys in there and the surgeon said he would not be able to do it without my breast being a real mess (tumor at high noon, "thing" at 4 and another at 7). So when he said he would have to take the breast, I didn't hesitate to say take them both. Had trouble with the stupid mastectomy bras so am 99% flat and fabulous. I don't regret any of my decisions for a minute.

Careninnj · October 2018

43 years old. Diagnosed with IDC. Stage 1b. Grade 1. Stats are in my signature. Oncotype 15. No rads. No chemo. 5 years on tamoxifen. I have two friends from high school. We all had similar stats. None had rads or chemo. We all had bilateral mastectomy.

bc101 · October 2018

No rads, no chemo. 5 years on Aromasin. Oncotype 10. I had a micromet in my sentinel node and sought out 3 opinions on radiation, but it wasn't strongly encouraged so I opted out. No chemo was a no-brainer for my type of cancer. I feel very comfortable with my decision to have a bilateral mx. No regrets. You do the best you can with what you have at the time. Best of luck to all!

Treatment after Mastectomy - hormones, chemo, etc.

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