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Triple Negative - Radiation / Double Mastectomy question

1acme
Posts: 77
Joined: Mar 2011

I am 37 y/o I yesterday been diagnosed with TNBC grade 3 and also DCIS.
I already had surgery (Feb-15/11) - Lumpectomy, Centennial Note & 14 Lymph Notes removed on RIGHT side.

Next step will be 16 weeks of Chemo (start Mid April)
- 4x A/C (Doxorubicin/Cyclophosphamide) following by
- 4x Taxol (Pacilitaxel)
- application every 2 weeks
- also recommended to combine with Neulasta (Pegfilgrastim) to support white cells grow

I also have next week scheduled appointment with Radiologist, which should begin after chemo.
However my question is .... since Radiation will be only treated ONE breast and I am getting worry of re-occurrence or new grow.

I am thinking to get Double Mastectomy to eliminate chances for re-occurrence or more grow. I figure out if I do not have breast cancer cannot re-grow there.

Anybody have same diagnosis and decide for DOUBLE MASTECTOMY ?
I just need to hear another people opinion/experience to help me to make "better" decision.

Hugs, Helen ♥

disneyfan2008
Posts: 5332
Joined: Oct 2010

I had lumpectomy so NOT a good one to give any advice....

just thinking of you...

Denise

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi Helen :) I'm triple negative, IDC was diagnosed stage 3c in August of 2009 (I was 37 as well). It was in my left breast, all left lymph nodes were positive, inner mammery node and supraclavicular node. February of 2010 I had a bilateral mastectomy and I'm really glad I chose this. Same as you, I was worried of re-occurrence. January of this year it came back in my bones (spine) so I'm now stage 4 and back on chemo. Triple negative is one of the most difficult to treat and that's another reason I chose a bilateral. You may want to check out this site and see if you can get some more information to help you with your decision.
www.tnbcfoundation.org
Big HUGS and Miles of Love,
~Kari

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I am not triple negative. I had a lumpectomy with rads. I was told that by having a lumpectomy with rads, that it was equal to having a mastectomy inre to survival rate and recurrence. They can't get all of your breast tissue with a mastectomy, so, you can still get bc even with a mastectomy.

I wish you the best in your decision.

Hugs, Diane

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

My dx is different, triple neg inflammatory BC on the left. So the left required a mastectomy. I opted for the double mastectomy, and am very happy with my decision. However, my surgeon made it very clear that they are NOT able to remove ALL breast tissue. So there is still a chance of re-occurrence. For me, the decision was as much about being 'even' as it was about minimizing the re-occurrence risk.

Regardless of my decision, you have to do what is right for you. You have to weigh the risks against the peace of mind. I did surgery after chemo, and spent all the months of chemo changing my mind back and forth. I know this is a difficult decision for you, so ask lots of questions, do lots of research, take your time, and then do what is best for you.

Hugs,

Linda

midnight10
Posts: 74
Joined: Sep 2010

I am (was?) triple negative also..Stage 2b, Grade 3, with 7 of 15 lymph nodes removed from right side also positive. My treatment plan was the same chemo that you are having on the same 2 wk schedule, I finished chemo on 11/17/10, had a double mastectomy on 12/14/10 and I just finished radiation 2 weeks ago. I'm 58, so was much older at dx time. The Neulasta shots didn't cause me any problems and as chemo went on I was told the shot was keeping me on my chemo schedule--my counts were low enough that they know without the shot they would have had to delay chemos til it went up again.
Because of the 'triple negative' both my oncologist and the surgeon encouraged doing the double, although they both did say it was my decision. The oncolgist said 'with you we need to be aggressive to stop this'.
Remember it ultimately is your decision and you need to make the decision that feels right.
Good luck to you. Prayers headed your way.

treecy1106's picture
treecy1106
Posts: 143
Joined: Apr 2011

I was just diagnosed with Infiltrating ductal carcinoma resembling medullary carcinoma. I found the lump. About 1 centimeter but one smaller one found inside the breast and the Dr. said he would suggest a mastectomy. MRI shows nothing underneath my arms but he will do a sentinel node biopsy. No mention of hormone receptors at all. I just figure it may be triple negative. I feel sick and I wonder how long I have to live.....

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

I have TNBC and am 54. I had a lumpectomy. Age is on your side when you have bc in the fact that 20 year studies have shown that older women can have a lumpectomy and live for years before the recurrence equals or becomes greater than having had a masectomy. However, the younger you are the more likely the need for a masectomy to improve survival rates.

One thing to think about is that if you do a double masectomy and reconstruction, gaining and loosing weight will not affect breast size as they are both going to remain the same size. Not so when you have one taken then opt for reconstruction. I will be praying for wisdom in decision making for you.

emamei's picture
emamei
Posts: 144
Joined: Feb 2011

I am 42 years old. I also was diagnosed with Stage 2, Grade 3 Invasive Ductal Carcinoma Breast Cancer that is Triple Negative.

I had a lumpectomy and axillary node dissection last October, just finished chemo three weeks ago. I was on the exact same chemo protocol as you including the Neulasta shots, every two weeks. I'm having re-excision surgery on April 27th to further clear the tissue margins that surrounded the original tumor. After that I will be having radiation treatments.

I asked my surgeon about doing a mastectomy to improve my chances. She explained to me that yes, TNBC has a high rate of recurrence in the first three years post-treatment, but if a recurrence happens there is only approximately a 10% chance it comes back in the breast(s) and an 80% chance it will come back in the bones, lungs, liver, or brain.

I have confirmed this info with my oncologist as well. Because my breast cancer went into two of my lymph nodes, and is TNBC it is not a straight forward surgical fix. If having a mastectomy improved my chances I would have opted for it in the beginning.

I have been told that TNBC responds very well to chemo, more so than other breast cancers. Our risks being TN is the risk of recurrence. As I understand the facts, once we pass the three year mark cancer free, the chances of recurrence begins to drop with each year.

I can completely relate to how you're feeling and what you're going through. I suspect that if your surgeon felt that a single or double mastectomy would improve your chances against recurrence, he/she would have already discussed it with you.

TNBC is hard to treat and is the second most aggressive breast cancer; second only to IBC. The good news is there is proactive ongoing research and clinical trials ongoing to find better, more effective targeted therapies for TNBC.

Try, as hard as it is too, not to focus on the "what ifs". We cannot control whether a recurrence happens or not, all we can do is take the best care of ourselves, body, mind and spirit as we can to give ourselves the best chances. Also, I would recommend that you insist that your oncologist follow you every three months for follow-up check ups and insist on mammograms, chest x-rays and abdominal untrasounds, every 3 months for the first two years post treatment. Some oncologists like to do this every 6 months. Also, requesting a CT or MRI scan at some point down the road is also reasonable.

I hope this information helps you. You will be in my thoughts.

elsie1966
Posts: 3
Joined: Apr 2011

i was just dignosed on april 4,2011 tnbc because of family history of other cancers i have decided to have both breast removed although i am the first on both sides of my family to get bc i am 44

24242
Posts: 1417
Joined: Mar 2001

I too am sorry you have to face so many things ahead. I was 36 at the time of my diagnosis and when making my decision it was known removing breasts does not completely reduce the possibility of getting it again since they do not remove every cell. We can minimize the risks I believe that is all we can do with this disease.
I knew in my soul since being so ill and stage 3 with lymphnode involvement already with a lump growing in my armpit in one week. I had surgery in less that two weeks and I had decided to have bilateral when my mother the nurse begged me not to and the surgeon agreed with my mother that I should treat the cancer and then if I wanted the other removed he would do that. I just couldn't imagine they would get me in for second one I already hated the dentist so what would I do with that.
For the first time in my life I actually realized how smart my mother truly was and listened to her and the surgeon who did this 92% of his practice. I did have the other removed one year to the day of first mastectomy and came home before 24 hours was up. I had more lumps grow and they were all benign but I never felt comfortable with one. I never have had reconstruction since surgery is hard on me as well as everything else they do to me.
I had a grandmother who had treatments back in the 60's and my chest looks a whole lot better than hers did since muscle is now left behind. I know we all have to be comfortable in our own skins after it is all said and done and that is what matters the most and our souls do speak to us if we only listen...
Tara

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