Topic: Long term survivor examples.

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM by banr

Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM by banr

banr wrote:

Just an idea came across my mind.

Can we share stories and examples of long term triple negative survivors. They dont participate in such forums. So its only by word of mouth that we get to hear about them.

But I also see few of them in this website, who themselves are long term survivors. I feel so happy to see how they have moved on so beautifully with their lives.

I know two such women. Both close to 10 years out of diagnosis. Both without any family history of cancer.

One diagnosed in 2003 and another in 2004. Both were in their late 30s then. Those days they were not aware that they were triple negative. But they say that tamoxifilin didnot work on them, they had only surgery chemo and radiation. So in all probability they were tnbc patients.

One was stage 1, another stage 2b. One had 6 rounds FEC and another had 6 rounds TAC. They both have yearly check ups now and are leading completely normal lives.

I also know another woman, who got diagnosed 5 years ago but stage 3, body didnot respond to tamoxifilin and had complete mastectomy. She had 6 rounds TAc, plus rads. Living a normal life...and put the entire episode behind her.

If you also know someone having similar treatment and diagnosis years ago and is still living ...please share. It will be very insipiring.

Love u all!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Jun 18, 2014 10:48PM Lettinggo wrote:

Ksteve, thanks for responding.  Is it because your lymph nodes were involved?  So even if you have a PCR you can still have lymph nodes involvement? how can that be?  This is all a lot to chew and digest on.... thanks again

I choose to empower myself with Divine Love and Protection and let go of fear, helplessness and hopelessness Dx 1/7/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Jun 18, 2014 10:58PM Lettinggo wrote:

Placid44, can you please tell me why you had radiation? I was going to the 06/14 lunch but could not last minute due to fatigue - am now done with chemo.   But Dr Wilkinson my oncologist will not make a recommendation and since I did not have a sentinel node biopsy done at the initial diagnosis, it is all guesswork for the medical team and me regarding whether my lymph nodes are involved.  Dr Vargas and Dr Edmiston have the position that if nodes are involved they will not take them out instead they add Rads, while Dr Cocilovo and Dr Akbari will take out some nodes and then add radiation.  Did you have any more nodes removed other than the sentinel nodes and then had rads too?  I know your surgeon was Dr Cocilovo.  I don't know why different surgeons have different practices on this issue.

btw, I am 44 at diagnosis as well.  would you share who was your radiation oncologist?

Thank you, hope to meet you at the next lunch.

I choose to empower myself with Divine Love and Protection and let go of fear, helplessness and hopelessness Dx 1/7/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Jun 18, 2014 11:20PM Lettinggo wrote:

Ozzygirl, thank you for sharing. one question for you: how do you know your tumor grew from 0 to 2.5cm in 3 weeks? Is that possible?  I thought even the fastest growing cancer takes 2-3 years.  but I doubted mine was during the time i was in another country which is about 5 weeks (from 0 to 2.5) as i had just had a physical with my gynocologist and honestly self examined myself almost everyday until that fateful day in Dec 2013.  So this is all very interesting.  Thank you very much

I choose to empower myself with Divine Love and Protection and let go of fear, helplessness and hopelessness Dx 1/7/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Jun 19, 2014 01:43AM Ozzygirl wrote:

Lettingo,

Yes, people say that all the time....there is no way it grew that quick yadda yadda but it did, I have even argued with doctors about it. But when they see the dates of the doctors notes on my reports/mammos path etc they soon stop questioning it.

I first found the bump in the shower, it was tiny and was almost like a blind zit. That's what I thought it was because it was tender. Wasn't even doing a BSE. I  just felt it when washing. I know the day as it was my last day in another country on a business trip before returning to the states. 

I had a previously scheduled obgyn appt for birth control one week later - by this time it was the size of a small marble and I was still thinking blind zit boil etc. No redness or anything like that. She ordered a mammo and US to rule out a blocked duct. 

Nothing on mammo, too dense. It was seen on US but they told me it was just a cyst. "Nice and round and not cancer, no bad edges etc; You are too young blah blah" Thankfully the head radiologist happened to walk in to talk to the radiologist that was doing my US and reviewed the US with him and  she said cysts grow quickly but lets just do a biopsy just in case.

Obgyn appt on Monday. 

Mammo and US the next day (They had a last minute cancellation and If I could come in that afternoon then they could see me otherwise it would be a 3 week wait) 

Biopsy on Wednesday afternoon and my obgyn called me Friday morning with the cancer result. (Never did get those dam birth control pills :P )  

Mast 10 days later.

Total time from finding the zit sized bump to mast was 25 days. Final path 2.5 cms. The good thing about fast growing tumors is that they react well to chemo as evidenced by the success-fulness of  doing chemo before surgery now.

I was very lucky in that all the pieces just happened to fall into place for a very quick diagnosis and surgery.  My insurance company was also very responsive with authorizations and I had really good coverage. 

I know that generally most cancers take time to grow and I have no idea what sparked mine to go into turbo mode but I know I am not the only one.

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Jun 19, 2014 04:45AM Lettinggo wrote:

Ozzygirl, thank you for the response. I suspected mine was like that too.  What was your ki67 mine was >90.

I choose to empower myself with Divine Love and Protection and let go of fear, helplessness and hopelessness Dx 1/7/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Jun 19, 2014 08:00AM KSteve wrote:

Lettinggo - I know I had lymph node involvement from day 1 due to biopsy and petscan results.  Since I had surgery after chemo, the surgeon still removed 15 lymph nodes, as well as all breast tissue.  There was no evidence of cancer in anything that was removed from my body.  But because I had such a large tumor and involved lymph nodes when diagnosed, they planned for me to have radiation.  Glad I did.  I feel like I did everything possible to get this beast out of my body.

Good luck to you,

Kathy

Dx 9/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 3/15 nodes, ER-/PR-, HER2- Chemotherapy 9/20/2010 AC + T (Taxol) Surgery 1/7/2011 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/14/2011 Breast, Lymph nodes Surgery 5/31/2011 Reconstruction (left); Reconstruction (right) Surgery 12/5/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 1/22/2014 Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 4/3/2014 Reconstruction (left); Reconstruction (right)
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Jun 19, 2014 09:20AM Ozzygirl wrote:

Lettinggo,

I did not have the ki67 test when I was diagnosed as it was not used for BC back when I was diagnosed.  I was staged at grade three as it was poorly differentiated throughout.

There have been a lot of changes over the years with the  new tests and changes in how things are staged and best of all....with all the new options and medications.

I don/t think it would have made any difference in the treatment for me because based on age and speed of growth etc my oncologist threw everything he had at it but it would have been interesting to know.

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Jun 19, 2014 11:10AM - edited Jun 20, 2014 02:11AM by lintrollerderby

Lettinggo said: "I thought even the fastest growing cancer takes 2-3 years."

Lots of people (physicians included) and medical literature talk about breast cancer taking years to develop. The most commonly stated figure is in the 6-10 year range. The problem with that range is it doesn't apply to all breast cancers. It tends to apply to the "traditional" subset of breast cancer--hormone receptor positive, HER2 negative, grade 1, and in a post-menopausal patient. In other words, a Luminal A cancer in the patient population that is most often diagnosed with the disease. Then, those figures get thrown around and applied to all breast cancers. Those of us with Triple Negative who were very young at diagnosis tend to dispute the close-to-a-decade number that we are given. I know that both my surgeon and I saw the difference in the tumor over a 5 week period. It went from difficult to locate with my hand, to visible as it pushed against the skin. And the growth was apparent with the naked eye as the weeks progressed. My MO and the next surgeon (who is a surgical oncologist and only does breast cancer surgery at an NCI CCC) said that our subset of breast cancer is different. Many of us go from 0 to palpable tumor in a very short period of time. They informed me that my tumor was only a few months old. 

I've since found studies looking at tumor doubling time in breast cancer. The often cited numbers are from 150-260 days and these tend to apply to the Luminal A, post-menopausal patients I mentioned above. For young TNBC patients, and some studies looked closer at those with BRCA1 mutations who have TNBC and basal-like characteristics (which I fit all 3), the mean tumor doubling time is around 45 days. And 45 days was the mean time. I have seen studies that individual patients had tumor doubling times as short as 28 days. 

All this to say that there really does seem to be something to how many of us feel that these breast tumors came from nowhere. We already know that breast cancer is not one disease, but many; the descriptions of how long it takes to develop varies by a multitude of factors.

Diagnosed at age 34 on 11 May 2011 • IDC • Right • 1.3 cm • Stage I • Grade 3 • 0/3 nodes • ER-/PR-/HER2- • Triple Negative and Basal-Like • Ki-67: 76% • P53: 64% • BRCA1+ (no family history) • BRCA1 mutation: IVS5-11T>G (known deleterious mutation) Surgery 4/27/2011 Lumpectomy: Right Surgery 5/30/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/22/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 1, 2014 02:09PM Gorilla12 wrote:

It is over 10 years for me. I was triple negative, stage 1, had chemo and radiation. I am ALIVE and going strong! I have remarried (4 yrs) to a sweetheart of a man, saw my 20 yr. old son just graduate Marines boot camp and my daughter get her Master's degree in Library Science. When I was diagnosed I thought I was going to die, but I didn't!!

Please have hope......

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Jul 1, 2014 04:14PM placid44 wrote:

Lettinggo,

Sorry, just saw your question. I had radiation because I only had 4 nodes removed. One was positive (the closest sentinel node) and three were negative. At the time of the SNB, they thought I was node negative, but the pathology afterward showed 6 mm of cancer in my sentinel node. 

Since recs are moving in the direction of not doing a full axillary dissection for women with only one positive node, we decided not to do a full axillary when I had my BMX (i did chemo first) but rather to do radiation. That was the rec of the tumor bd, dr. Cocilovo, dr. W, and what i was most comfortable with. The rads hit the breast and the nodes. I generally tend to decide on more aggressive treatment options. My only not-as-aggressive decision was no axillary, but I did have rads.

My rad onc is dr. Jane Grayson at inova Alexandria hospital and I really like her, clinically and personally.

I did not get a pcr, but tumor shrunk 77%, from 3.1 cm. to 7 mm. That will have to be good enough, although I was very disappointed/scared by that result.

I hope to see you at the next lunch!

Ki67: 70%; beltwaybreastcancer.blogspot.com Dx 8/20/2012, IDC, 3cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Chemotherapy 8/28/2012 AC + T (Taxol) Surgery 2/11/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/25/2013 Breast, Lymph nodes Surgery 11/24/2013 Reconstruction (left); Reconstruction (right)

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