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SHARE Metastatic Breast Cancer

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New to this group of amazing women

Tbott profile image
9 Replies

My name is Tammy I am 50. I was diagnosed with invasive ductal carcinoma 10/4/16 by mammogram. A second lump was discovered when they performed a sonogram on the first lump, both ER+. I had a lumpectomy 4 nodes removed and clear, margins clear. Oncotype test came back with a score of 12 for 1.2cm lump and a 29 for the .7mm lump. Told it was Stage 1 grade 1 for 1.2cm lump and Stage 1 grade 3 for .7mm lump. Oncologist told me there was no data on if chemo would benefit me or not so It was up to me if I should take it or not. I went to a breast cancer specialist at MUSC in Charleston,SC and he recommended. I take it because it would benefit me 3%. I went back to my oncologists with this information and he pointed out that I am already anemic and on mess for that so I would most likely need blood transfusions during chemo and that woul put me in a 10-15% chance of Leukemia. We talked and I decided that for me the benefit didn't outweigh the risk. I am now having 33 radiation treatments followed by Tamoxifen for 5+ years. I am praying I chose the right path. Anyone else have an Oncotype test come back as a 29?

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Tbott
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9 Replies
Rhwright12 profile image
Rhwright12

Hi Tammy!

I take Tamoxifen also. My doctor said my cancer count always came down in correspondence to my estrogen levels from taking Tamoxifen.

Sounds like u have a great plan in place. I'm not sure what the oncotype test numbers are for. Mine was stage IV so I'm sure it said throw everything at it. Lol I actually only had 6 Perjetta. No radiation or surgery. So I think you're good on the treatment end of things...

-Praying for good health this coming year!

-Heather

Tbott profile image
Tbott in reply to Rhwright12

Hi Heather! Thanks for the encouragement. I hope to encourage others as well. I have 22 more radiation treatments and then starts Tamoxifen. I am wondering what side effects I might encounter. I am still having regular cycles and would be ok with menopause since I will be 51 next week. I am also curious what tumor markers are and how often are they tested... my saying now is. You don't know what you don't know.

Good Health and blessings this new year.

Tammy

Ibelong profile image
Ibelong

These choices are tough ones and get tougher with each diagnosis. I hope and pray that all the choices that we make help us live a longer life with as many joyous years.

Tbott profile image
Tbott in reply to Ibelong

Absolutely ! I hope the same.

missa13 profile image
missa13

Hi Tbott ! Welcome to the site. it sounds like you did a good job w consulting your doctors and making an informed decision.

Tbott profile image
Tbott in reply to missa13

I sure hope so. That's really the best we can do. Being informed and making the best choices for our situation. I'm learning so much from women who have faced what I'm facing. I know what questions to ask and things to be mindful of because other women have shared their stories about their journeys. I want to be able to help and encourage other women as well in this scary part of life we've been introduced to.

Mariannem profile image
Mariannem

Tammy, the best thing you can do to help prevent reoccurrence or progression of the cancer is to see an integrative medicine specialist. Preferably one who specializes in oncology. They will develop a plan with you for supplements, diet changes and exercise plan to decrease your chances of reoccurrence. An intregrative medicine specialist may be able to help treat your anemia. I recently heard that regular exercise will decrease risk of reoccurrence by 50%. This is much better than any medication or radiation that can be given. I realize that regular exercise is easier said than done. One needs to start small and work your way up. I have been able to work my way up to currently 4-5 hours per week over the past 3 years. I have been living with Metastatic Breast Cancer for 3 1/2 years. I wish I would have seen an Intregrative Medicine Specialist 8 years ago after having Stage 1 breast cancer.

Marianne

Tbott profile image
Tbott in reply to Mariannem

Thanks Marianne! You are absolutely correct. I am making big diet and exercise changes. I have never heard of an integrative medicine specialist but I will be looking for one now. I had bariatric surgery 11 years ago and have kept up with a nutritionist but cancer is a whole new can of worms that I need to deal nutritionally with. Oh boy!

4awinner profile image
4awinner

Your diagnosis sounds so similar to mine. I was diagnosed in April, 2016, with DCIS. My mammogram, ultrasound, nor MRI revealed breast cancer. The MRI showed two masses, and when they did the lumpectomy, they found a cluster of precancerous cells that weren't even a stage. However, I had a reconstructive mastectomy in June. I didn't have to have chemo or radiation. Initially, they had said that I would have to have radiation, but after they found the precancerous cells, and got rid of them, no treatments. Then when they sent specimens to pathologist afterwards, they told me they found evidence of LCIS which increases the chance of it spreading to other breast. I immediately told them to take it too, my team advised me to try Tamoxifen and be monitored closely. So far, other than some side effects of medicine, everything is going great. I go to see my oncologists this month. Praying that all is well. Good luck on your journey!

Audra Winters, Kentwood, LA

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