Stage 1 - Chemo?

Mika7890 · March 2014

Hi Everyone, my mom was just diagnosed and she is so scared. Her fear of everything is giving me such anxiety and neither of us have been sleeping well. She had a lumpectomy and they removed 2 tumors, 1.8cm and 0.6cm. One was high grade, One was intermediate grade. They had told her that she would need radiation and tamoxifen. Now they are suggesting chemo because her Mammaprint came back high risk. Nodes were negative, but they did find an isolated tumor cell in one. She does not want to do chemo and is so scared, as am I. Has anyone had these same results and decided to do or not do chemo? I think she might want to get a second opinion.

juneping · March 2014

has your mom got her oncotype dx?? and age also plays into factor sometimes...she should get the oncotype done and see what MO says...(((hugs)))

mdg · March 2014

I was stage 1 grade 2 and did chemo. My oncotype came back at 17 which is the highest number in the low risk category but I had vascular invasion in my tumor despite clear nodes. I had to make the call so I did the chemo. I was petrified of the chemo but it was much easier than I thought. It was not fun...but I knocked it out and have no regret. I used cold caps and kept my hair so I completed chemo with hair. Good luck making the choice. I know how hard it is!

thegoddessjen · March 2014

I had two areas removed via lumpectomy. One turned out to be LCIS (0.7cm) and the other was my ILC (1.7 cm), but it was Grade 1. I insisted on the oncotype dx and it came back a score of 14 and I chose no chemo. I am doing rad therapy and tamoxifen.

My original oncologist would not even have ordered the oncotype dx because of the size of the tumor(s) and the fact that I had a few clusters of cells in one node (that's the only reason my staging below is a 2a). I would DEFINITELY seek a second opinion and do some research. Of course you are petrified! This is a very scary thing to go through for everyone involved. And it's a BIG thing - I had to pay out-of-pocket for my second opinion (have an HMO) but it was so worth it. I ended up switching primary care groups so I could use a different oncology treatment team and I am very happy with them. They offer me options, and they are well versed in the NEW research results that emerge. You might get a second and feel even more confident with the recommendations of your FIRST and that's ok too.

Some people feel like they really need to do chemo to feel that they did EVERYTHING that was in their power to prevent a recurrence. There are some indications however that at the lower end of the oncotype ratings (their 'low risk' category) that chemo provides very little benefit and that some of those cancers can even be pretty chemo-resistant. Everyone has to choose what will give the the BEST peace of mind knowing that none of us get any guarantees.

MsPharoah · March 2014

Hello Mika and so very sorry you are on these boards! I echo the other advice you have received. Get a second opinion...the oncotype test if it is available and then decide about chemo. If your mother is in good health and doesn't have any other risk factors, chemo is doable. I also have grown children and they were very afraid for me but when it came time to decide about chemo, they were on my side and supportive all the way. I had 6 cycles of TC and I missed a total of 8 days work...6 of which were the chemo infusion days. It wasn't fun, but I made it through. I think a lot of people worry about the hair loss and thinking they are going to feel sick all the time. First, losing your hair temporarily is a small price for a shot at a cure for stage 1 breast cancer....and with today's chemos, most women are able, with support and more rest, conduct a normal life.

Good luck to you and your mother...and your whole family, Love MsP

Mika7890 · March 2014

Thank you SO much for your responses. She did have angiolymphatic with one of the tumors. No nodes. Both within the same duct, clear margins. Without the mamma print, the doctor said 50/50 for chemo. He said if you brought 10 docs in a room, 5 would say yes and 5 would say, so he ran the mammaprint to see. Now they are pushing the chemo and she really is leaning towards not doing it. She is 60, in good health. I also agree that we should check the oncotype. She does not like the side effects that come with chemo and thinks that those risks are worse than not getting it. I just am so scared for her to make a decision either way and i know she doesn't really know what to do. You are right, even with chemo, we are not guaranteed anything for her, but I want her to do whatever is going to give her the best chance. This is SO hard

Mika7890 · March 2014

And I just checked she is Grade 2.

juneping · March 2014

mika - after your mom got her oncotype done, you two will feel much easier to make decision. there's a chart analysis how helpful chemo is going to be for her. it can help making decisions much easier. it's quite easy to understand that chart as well.

MO like to move that recurrent rate down below 10%....that's how they plan the treatments.

regarding treatment, it depends on the tumor nature, ER/PR+ or HER2 status...it all greatly plays a big factor about what treatment to go for. and the way my MO explain to me, she said nowadays the life expectancy is 80 years...so for me, she wanted to make sure i won't have recurrence for the next 40 years. for your mom it's 20 years...so they would have to take that into consideration. she told me if i was 65, she would recommend me something very different. and it also has to do with her health if chemo is going to cause any complication. especially heart issues. the MO needs to take ALL that into considerations before recommending your mom the treatment. but still, ultimately it's your mom's decision. you/your mom do have a say into the decision.

juneping · March 2014

what's her Ki67 proliferation rate?

lmtjmt · March 2014

yes, 4 X TC, stage 1.

juneping · March 2014

the purpose of oncotype DX was trying to NOT overtreat BC patients. the doctors realized they were giving unnecessary chemo therapies to some BC patients, hence the oncotype DX. with cancer, nothing is predictable. there's always some fall outside of the norm on both ends...

her mom is 60...which is not old. but if there's any complications, it's very difficult to bounce back.

edwards750 · March 2014

juneping- my Oncologist said that very same thing when she ordered the test for me.

kayb- you are definitely right about insurance probably balking about paying for another test and by the way don't know how pricey Mammaprint is but the Oncotype test was $5k when I had it done. Genomic Labs will work with you if insurance won't pay for the test. I wonder how many times those 2 tests have completely different results. Insurance companies, we all know, nickel and dime us to death on seemingly every claim we submit.

Mika- I have Stage II, Grade 1 BC and I did have a micromet in the SN. I had a lumpectomy and 33 RADS treatments and currently taking Tamoxifen. Had it not been for the Oncotype test and my subsequent low score of 11 I might have had to have chemo. Your Mom and I are about the same age. The only reason I can deduce as to why her drs want her to do chemo is the Grade 2 of the tumor.

juneping · March 2014

it's still about the same...my bill came to 4K+....my jaw dropped when i saw the bill. my insurance covers it...still very expensive.

keepthefaith · March 2014

I had an onco of 21. My MO said since I was in the intermediate score, that she could order the mammaprint and most likely the insurance would pay for it. The mammaprint looks at more genes than the onco does, but may come out with different scores, recommendations. For me, I didn't do the mammaprint bc I was afraid it would just add confusion to the mix. I also didn't want to wait any longer, for more test results, to start my treatment. I am 58 and decided to do chemo. I have a family history of BC, but am not BRAC +. I told my MO that I didn't want Adriamycin bc of heart disease in my family also. I did 4 TC's and did well with few SE's...at least short term! I guess time will tell about long term:). It really wasn't as bad as I thought it would be. It is a hard decision for sure. I'm happy with my decision and made the decision that was best for me. My kids were not on board, but I didn't want to look back in 10-20 yrs with a recurrence of BC and not have done all I could, while I could. I'm sure your Mom will make the right decision for her, too. Good luck!

DDOL · March 2014

Hi can you tell me what is a cold cap ?

Thank for sharing

Diane :-)

juneping · March 2014

kayb - sorry, i wasn't aware mika's mom had mammprint done.

juneping · March 2014

kayb -

msphil · March 2014

Hey sweetie, a second opinion will be good and also each person has to do what they think is best for them, I did L mast, chemo and rads and 5 yrs on tamoxifen, and all while making wedding plans,I wanted the lumpectomy But went for total radical mastectomy. I am now 20 yrs this year(SURVIVOR)Praise the LORD. msphil

mfm48 · March 2014

DDOL - there is a whole thread on Cold Caps that has a lot of great information. Basically the cold cap is actually a cold (freezing) cap that is worn during chemo to protect the hair follicles so that the hair does not fall out. It appears to be most effective with the Taxotere chemo regimen. There is currently a clinical trial testing a certain brand of cold cap. A number of us successfully used the Penguin Cold Caps. Its not cheap, takes a lot of effort, but for a lot of women it helps them keep their hair where they would otherwise lose it.

I hope that helps.

Stage 1 - Chemo?

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