Recently Diagnosed - Triple Negative - BRCA2+
I just joined this site. Seems we all have similar but different stories and it is inspiring to read through this discussion board. Here's some of my story
Oct 4th - Went for my annual mammo (at 42)
Oct. 10th - diagnostic mammo and ultrasound, then got in with breast surgeon that afternoon after results
Oct 11th - Biopsy Oct. 11th
Oct 18th - Cancer diagnosis (They weren't sure it had started in the breast at this point, path had been referred to Hopkins for second opinion due to non-classic cells, but ER, PR negative)
Oct 31st - BRCA2 gene mutation positive results (no family history turns out it appears to have come down all through the men in the family and I am the first and only BC so far(fingers crossed)along with final path (less HER2 status)(Adenocarcinoma, mammary infiltrating ductal carcinoma with secretory and papillary feature , High grade)
Nov 9th - Triple negative results (with HER2 coming back negative)
Nov 10th - bilateral mastectomies(Still trying to heal from this surgery)
quite a journey so far and a BIG journey ahead
Nov 16th - early birthday present, good news preliminary path report shows nodes came back negative (yeah!) so stage 1 (1.2cm tumor right side, nothing left side or nodes)
Chemo set to start Dec 7th (Taxotere & Cytoxan)
I am now very concerned with double whammy of the triple negative (pretty rare less then 10-15% of BC) and gene mutation (pretty rare < 10-15% of overall population). I was aggressive with bilateral to help prevent recurrence, but the 2 year recurrence rate for triple negative is really scary.... From what I read it is the most aggressive BC and they don't have as good of treatments to ensure they get everything.
I am scared but trying to stay very positive. Have a wonderful support system, but I don't have any connections through the sisterhood who are triple negative and/or BRCA2 gene positive....
I feel better actually putting all this down in writing....
Thanks for listening!
Amy
Live.Laugh.Love
Comments
-
Welcome sorry you have to be
Welcome sorry you have to be here, but glad you found us. I am not triple negative but have my own rare type cancer. Its hard but you eventually, slowly wrap your brain around it. many people will answer you just wanted to say hello, and there are many reasons for you to be very hopeful.0 -
Welcome
Yes, sorry you are joining us.
But, it sounds like you have a GREAT handle on everything that is happening to you. I am +, but I think we can all relate to a fear of cancer coming back.
A good quote I like to keep in mind is "Don't let fear of what might happen tomorrow take away the joy of today."
I had my double mastectomy 3 months ago and am just feeling healed, so be gentle with yourself! Yoga and stretching really helped me get my range of motion back to 99%.
Stay in touch.
V 0 -
Thanks!Vigee said:Welcome
Yes, sorry you are joining us.
But, it sounds like you have a GREAT handle on everything that is happening to you. I am +, but I think we can all relate to a fear of cancer coming back.
A good quote I like to keep in mind is "Don't let fear of what might happen tomorrow take away the joy of today."
I had my double mastectomy 3 months ago and am just feeling healed, so be gentle with yourself! Yoga and stretching really helped me get my range of motion back to 99%.
Stay in touch. V</p>
V,
Thanks... I am looking into yoga, glad to hear it helped you! Did you have Chemo as well? I see your beautiful picture of getting your head shaved so I am assuming so.... How are you doing with it all?
All thoughts and experiences are greatly appreciated!
Thanks,
Amy.0 -
My good friendAmy-LLL said:Thanks!
V,
Thanks... I am looking into yoga, glad to hear it helped you! Did you have Chemo as well? I see your beautiful picture of getting your head shaved so I am assuming so.... How are you doing with it all?
All thoughts and experiences are greatly appreciated!
Thanks,
Amy.
Was diagnosed and treated with triple negative 8 years ago. She was also stage 1. She living large with no recurrence. Enjoy where you are today. None of us has ant guarantees...bc or not. Hugs!
Roseann0 -
Thanks!carkris said:Welcome sorry you have to be
Welcome sorry you have to be here, but glad you found us. I am not triple negative but have my own rare type cancer. Its hard but you eventually, slowly wrap your brain around it. many people will answer you just wanted to say hello, and there are many reasons for you to be very hopeful.
So sorry you have to be here too! Thanks for your thoughts and the hello! What type do you have? How far are you along on your journey? Happy Thanksgiving!
Thanks,
Amy.0 -
Thanks!roseann4 said:My good friend
Was diagnosed and treated with triple negative 8 years ago. She was also stage 1. She living large with no recurrence. Enjoy where you are today. None of us has ant guarantees...bc or not. Hugs!
Roseann
Thanks Roseann!! This is so good to hear! Living life to it's fullest is definitely in the plan!!!
Hugs back to you!! Thanks!!!0 -
Triple Negative Breast Cancer
Hi Amy,
I was diagnosed with TNBC in 12/2009 - Stage IIa, Grade 3. There is no history of breast cancer in my family. I had a complete axillary dissection with 2 of the 22 nodes being positive for cancer. A right mastectomy followed. A tissue expander was put in at that time. I had a port implanted and then had chemotherapy - 4 rounds of A/C (Adriamycin and Cytoxan) followed by 12 rounds of Taxotere. My last chemo was in 8/2010. I did not have to have any radiation treatments. My reconstruction surgery was in 6/2011. I had a breast reduction on the left/non-cancer side and had the tissue expander exchanged for a saline implant. My oncologist considers me to be in remission.
A good source of information is the website for the Triple Negative Breast Cancer Foundation. While TNBC is fairly aggressive, it is not THE most aggressive type of breast cancer. That would probably have to be Inflammatory Breast Cancer. While TNBC cannot be treated with drugs such as Tamoxifen, Arimidex or Femara it apparently responds very well to chemotherapy. All is not lost.
I think ANY cancer diagnosis is scary but the more educated you are about your particular type of cancer the less frightening it will be. It is the unknown that gets you. There are a number of us on this board who are triple negative. Just about anything you will be going through has been experienced by someone here. We are always happy to share what we know.
Good luck and keep us posted. Happy Thanksgiving.
IRENE0 -
Hi Amyjessiesmom1 said:Triple Negative Breast Cancer
Hi Amy,
I was diagnosed with TNBC in 12/2009 - Stage IIa, Grade 3. There is no history of breast cancer in my family. I had a complete axillary dissection with 2 of the 22 nodes being positive for cancer. A right mastectomy followed. A tissue expander was put in at that time. I had a port implanted and then had chemotherapy - 4 rounds of A/C (Adriamycin and Cytoxan) followed by 12 rounds of Taxotere. My last chemo was in 8/2010. I did not have to have any radiation treatments. My reconstruction surgery was in 6/2011. I had a breast reduction on the left/non-cancer side and had the tissue expander exchanged for a saline implant. My oncologist considers me to be in remission.
A good source of information is the website for the Triple Negative Breast Cancer Foundation. While TNBC is fairly aggressive, it is not THE most aggressive type of breast cancer. That would probably have to be Inflammatory Breast Cancer. While TNBC cannot be treated with drugs such as Tamoxifen, Arimidex or Femara it apparently responds very well to chemotherapy. All is not lost.
I think ANY cancer diagnosis is scary but the more educated you are about your particular type of cancer the less frightening it will be. It is the unknown that gets you. There are a number of us on this board who are triple negative. Just about anything you will be going through has been experienced by someone here. We are always happy to share what we know.
Good luck and keep us posted. Happy Thanksgiving.
IRENE
Hi Amy, my diagnosis was totally different. I just want to welcome you to our discussion board.
Ballerina0 -
Hi Amy
Hi Amy, Thanks for sharing your story. I'm so sorry though that you have a cancer story to share. I agree it does help to share and yes, it is a long journey. I was diagnosed on Aug. 11th with Stage I invasive ductal carcinoma, grade 2, ER+,PR-. HER2-. I've had a lumpectomy and sentinel node biopsy with micrometastisis. I had my first chemo treatment of Taxotere and Cytoxan on Nov 4th. So far it wasn't too bad except the hair loss. Mine just fell out this past Sunday. Yes, I was very traumatized, but I'm looking ahead to just getting this over with asap. I'll be done chemo in mid to late Jan then 5-6 wks radiation, 5 yrs hormone therapy. It's a very long journey, but God is leading every step. I hate that I'm here, but ....I'm here. I hope you can get through this as easily as possible. This site is very helpful. You can get many questions answered.0 -
Irene,jessiesmom1 said:Triple Negative Breast Cancer
Hi Amy,
I was diagnosed with TNBC in 12/2009 - Stage IIa, Grade 3. There is no history of breast cancer in my family. I had a complete axillary dissection with 2 of the 22 nodes being positive for cancer. A right mastectomy followed. A tissue expander was put in at that time. I had a port implanted and then had chemotherapy - 4 rounds of A/C (Adriamycin and Cytoxan) followed by 12 rounds of Taxotere. My last chemo was in 8/2010. I did not have to have any radiation treatments. My reconstruction surgery was in 6/2011. I had a breast reduction on the left/non-cancer side and had the tissue expander exchanged for a saline implant. My oncologist considers me to be in remission.
A good source of information is the website for the Triple Negative Breast Cancer Foundation. While TNBC is fairly aggressive, it is not THE most aggressive type of breast cancer. That would probably have to be Inflammatory Breast Cancer. While TNBC cannot be treated with drugs such as Tamoxifen, Arimidex or Femara it apparently responds very well to chemotherapy. All is not lost.
I think ANY cancer diagnosis is scary but the more educated you are about your particular type of cancer the less frightening it will be. It is the unknown that gets you. There are a number of us on this board who are triple negative. Just about anything you will be going through has been experienced by someone here. We are always happy to share what we know.
Good luck and keep us posted. Happy Thanksgiving.
IRENE
Thanks, I will check
Irene,
Thanks, I will check out this site.... Agreed with you on any diagnosis being scary. Just curious on your decision of saline versus silicone. My plastic surgeon was leaning towards silicone, but I hadn't decided my preference yet. This whole situation seems manageable on some days, and very overwhelming on other days.....
Hope you had a wonderful Thanksgiving!
Amy.0 -
Journeymadsters1 said:Hi Amy
Hi Amy, Thanks for sharing your story. I'm so sorry though that you have a cancer story to share. I agree it does help to share and yes, it is a long journey. I was diagnosed on Aug. 11th with Stage I invasive ductal carcinoma, grade 2, ER+,PR-. HER2-. I've had a lumpectomy and sentinel node biopsy with micrometastisis. I had my first chemo treatment of Taxotere and Cytoxan on Nov 4th. So far it wasn't too bad except the hair loss. Mine just fell out this past Sunday. Yes, I was very traumatized, but I'm looking ahead to just getting this over with asap. I'll be done chemo in mid to late Jan then 5-6 wks radiation, 5 yrs hormone therapy. It's a very long journey, but God is leading every step. I hate that I'm here, but ....I'm here. I hope you can get through this as easily as possible. This site is very helpful. You can get many questions answered.
Thanks so for sharing... You will be 1 month ahead of me, but as of right now I have no radiation planned. I understand the symptoms of Taxotere & Cytoxan are pretty tolerable, is this what you are finding? Are your rounds every 2 or every 3 weeks? Best of luck!!0 -
triple negative
I am worried about the future. I am 49, 8 cm tumor, stage 2b, grade 3 and no nodes and no family history. At first the discussion with the Dr had been double mastectomy, but now since I had the lumpectomy, chemo and radiation, they want to just keep a close eye on me and opt for surgery to reduce my left to match the right. I truly believe this is due more to my lousy insurance. Seems more than likely most women have a double mastectomy with this diagnosis. I am worried its because of money they aren't giving me a double mastectomy. Am I the only one with this diagnosis not having a double mastectomy? thank you0 -
Unilateral Mastectomy; Saline v. SiliconeAmy-LLL said:Irene,
Thanks, I will check
Irene,
Thanks, I will check out this site.... Agreed with you on any diagnosis being scary. Just curious on your decision of saline versus silicone. My plastic surgeon was leaning towards silicone, but I hadn't decided my preference yet. This whole situation seems manageable on some days, and very overwhelming on other days.....
Hope you had a wonderful Thanksgiving!
Amy.
Hello Ladies,
DebbyB - I had a right mastectomy only. My doctors never even suggested that I needed or should have my unaffected left breast removed as a preventative measure. I had pretty good insurance so that was not really an issue for me. When my right breast was removed I had a tissue expander put in. When it was time for my reconstruction surgery I had the expander replaced with a saline implant. I had my left breast reduced to match at the same time. The reconstruction surgery was done on an outpatient basis. I am not happy with how the shape of the reconstructed side turned out so I am having revision reconstruction surgery done on that side next month.
Amy-LLL: Saline v. Silicone is a big decision. There is just no perfect way to decide. I have read a lot of information online and hard copy info provided to my NEW plastic surgeon by the implant manufacturer Natrelle. I initially went with saline because if it ruptures for some reason the only thing that leaks into your system is saline. In addition, if a saline implant ruptures you are more likely to know it has leaked as you will likely have a visible difference in your breast. Silicone implant ruptures are so-called "silent" ruptures. You will not see a difference. With silicone implants you need to have an MRI every 3 years to check for those silent ruptures. I was not thrilled about subjecting myself to more exposure than absolutely necessary. That being said, the chance of rupture of either kind of implant is not huge. I am told that the silicone implants "feel more natural." I am not overly concerned about that issue but am more concerned about the ultimate shape. My plastic surgeon leans slightly toward a round, smooth, silicone implant but says the decision is entirely up to me. I have my pre-op office appt on 12/7 and will make the final decision then. My surgery is scheduled for 12/22.
Hope this info is of some use to you ladies.
IRENE0 -
My first cancerin 1994 wasDebbyB said:triple negative
I am worried about the future. I am 49, 8 cm tumor, stage 2b, grade 3 and no nodes and no family history. At first the discussion with the Dr had been double mastectomy, but now since I had the lumpectomy, chemo and radiation, they want to just keep a close eye on me and opt for surgery to reduce my left to match the right. I truly believe this is due more to my lousy insurance. Seems more than likely most women have a double mastectomy with this diagnosis. I am worried its because of money they aren't giving me a double mastectomy. Am I the only one with this diagnosis not having a double mastectomy? thank you
My first cancerin 1994 was ductal, my second in 2009 was lobular. I finished chemo again 2 years ago in jan 2010 and rads in may 2010. I am on tamoxifen. so hmmm how far I guess almost 20 years! sorta!!!! lol0 -
Surgery - diagnosticsDebbyB said:triple negative
I am worried about the future. I am 49, 8 cm tumor, stage 2b, grade 3 and no nodes and no family history. At first the discussion with the Dr had been double mastectomy, but now since I had the lumpectomy, chemo and radiation, they want to just keep a close eye on me and opt for surgery to reduce my left to match the right. I truly believe this is due more to my lousy insurance. Seems more than likely most women have a double mastectomy with this diagnosis. I am worried its because of money they aren't giving me a double mastectomy. Am I the only one with this diagnosis not having a double mastectomy? thank you
Debby,
Stay on top of your diagnostics, my surgeon and oncologists suggested bilateral because of my BRCA2 gene before I knew for sure I was triple negative (something like 87% recurrence in the other side within 5 years)... How long ago was your surgery?0 -
Another triple negative here with you!
Hi Amy,
I'm so sorry to hear all you've been through. I just wanted to check in and welcome you. I know how scary triple negative can be. I had triple negative, stage IIa. My lumpectomy wasn't successful so I had a single mastectomy and got clean margins. I had A/C and Taxol dose dense for my chemo. I'm over a year since diagnosis and more than 6 months from the end of chemo and I'm doing pretty good so far! Even my hair came back - its really dark and soft but nice (I was a blond). I had reconstruction with an expander and it came out awful - not sure what I can do about it.
The only thing I can do now is to eat a really low fat diet, with lots of blueberries (just in case they actually work) and I exercise. I'm trying to make my body as strong as I can in case I have to battle this awful cancer again. I wish you all the best in your recovery.
Lots of hugs,
JoAnn0 -
Amy-LLLAmy-LLL said:Surgery - diagnostics
Debby,
Stay on top of your diagnostics, my surgeon and oncologists suggested bilateral because of my BRCA2 gene before I knew for sure I was triple negative (something like 87% recurrence in the other side within 5 years)... How long ago was your surgery?
I had a lumpectomy May 2nd of this year. I really don't want to go through again and scared I will be because of the high chance of recurrence.0
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