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Trying to understand the basics of a reoccurance

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bubby56 View Drop Down
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    Posted: Jul 23 2017 at 4:24pm
Hello everyone,

I was diagnosed last week with TNBC.
When my initial biopsy was done May 24, tests to find out the biomarkers were not requested so I started making decisions and researching BC assuming it would be one of the "other" types. (I do not have any of the common risk factors, unless I have the BRCA1/2 gene, but there is no family history)

The decision was made to have a lumpectomy as soon as possible (July 5, 2017) and a bilateral mx with immediate reconstruction as soon as it could be scheduled with the Plastic Surgeon.
I am trying to understand some of the basics about TNBC and how it is different from other BCs.

1. My surgeon insists that the survival rates for lumpectomy vs. mastectomy are the same
AND the type of breast cancer does not change the surgical treatment.
I am having difficulty understanding this. 

I have read that TNBC is more likely to reoccur in the other breast, so wouldn't a prophylactic mastectomy be advised?

2. I have not been tested for the BRCA1/2 gene.
Wouldn't this also impact the surgical recommendations and adjuvant treatment? 
(The test and consultation with a genetic team will take several months in Canada)

3. Now this may be a million dollar question, but, if there is a reoccurrence, would the risk be greater if I had skin sparing reconstruction because there could be residual breast tissue?

4. If there was a reoccurrence in another area of my body, like the liver for example, would it be a TNBC tumour cell that travelled there and laid dormant until circumstances were right, or is it a liver cell that decided to go nuts?


Thank you for your help!!

-D
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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2017 at 6:27pm
Hi Bubby56,
I can only tell you what I know from my prior research.  Yes, the survival rates for lumpectomy and mastectomy are the same, and I had a hard time believing that as well.  However, if clear margins are achieved in a lumpectomy, apparently that is deemed just as good an outcome.  From what I understand, mastectomies are medically recommended when the tumor is large and it will be difficult for the surgeon to "save" the breast, or when you are BRACA positive (because the chance of the TNBC coming back is so great).  That being said, however, if you emotionally are more comfortable with a mastectomy, your doctor should listen to you and you should be able to have one.  There is a chance that TNBC could appear in the other breast in the future, but I can't remember the percentage chance - it was not enough to alarm me.  I encourage you to get the BRACA gene testing because that could impact treatment.  (I believe it is Carboplatin that is a drug recommended to include in your protocol if BRACA positive.)  I don't know anything about skin sparing reconstruction but imagine with more breast tissue left, this would increase chance slightly.  If you did have a recurrence in another part of your body, that would be from a TNBC cell which physically travelled to that new location and stayed dormant until something triggered it to grow again.  This would still be called TNBC, not liver cancer, etc.   I personally did have a tentative mastectomy planned during my treatment, but went to my radiation doctor earlier than scheduled for his advice.  When he told me that medically, I did not need a mastectomy, and assured me he was going to irradiate my entire breast, I decided to be OK with a lumpectomy.  I am at peace with that decision, but would never tell anyone else what to do.  That is such a personal decision, and so many variables involved.  I hope you will decide what is best for you and your situation.  Be sure to have your doctors communicating with each other, and bring a list of questions with you to each appointment.  The more you know, the more you can ask, and then feel you are making the right decision for you.  Those were good questions you asked, and I had a lot of those same questions when I went through treatment.  Sending you my best!
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Postive3negative View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Postive3negative Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2017 at 7:08pm
Hi Bubby56,
Your anxiety is so familiar to me and I'm so sorry you have to be part of this special club. I'm a four year survivor and reading your post made me remember being in exactly the same quandry. I also found that researching anything about TNBC on the internet kept turning up articles and research papers with the phrase 'worse prognosis than other breast cancers' and I found that terrifying.
Here's what I wish someone had explained to me back then. I hope it helps you too:
Firstly, the 'poor prognosis' is comparing TNBC to other kinds of breast cancer and not to other cancers generally. ALL breast cancers now have good survival rates. It's just that they are about 10% better for non TNBC cancers. It have me a huge amount of relief to understand this. As a comparison, pancreatic cancer only has about a 15% survival rate!
Next, you are not statistics. Survival rates include all those people that do nothing to recover. Every step you take to improve your odds helps you to be in the survivor camp. If you eat well, give up alcohol or seriously reduce it, take up yoga and meditation (now scientifically proven to reduce inflammation in your body) or fast regularly (it triggers autophagy which cleans up dead and damaged cells) every one of these things will help to improve your chances of coming out the other side. Basically anything you choose to do for your health will make a difference. 
Specifically, with regard to your questions about surgery, it's worth keeping in mind that there is always loads of research going on into breast cancer and in the four years since I've had it, advice regrading whether to have chemotherapy before or after it, whether to have lumpectomy or mastectomy and whether to keep or remove the other breast has varied. I had two 'breast conserving' surgeries following chemotherapy with radiation in between. Ultimately I had a bilateral mastectomy because the second surgery (one year after the first) showed random cells that were active/invasive. I chose to have both breasts removed even though I was told that there was no significant risk of it occurring in the other breast. I was very large breasted (F cup) so this was as much an aesthetic decision as a medical one; I didn't want one large breast. I don't miss my breasts but in hindsight I wish someone had talked to me about what it would feel like to loose both my nipples. I have realised that they played a big role in my sex life and I still miss them. I'm not sure if I had known this whether I would have kept my 'good' breast. Maybe. 
Now here's the final bit of really important information. Full mastectomy does significantly reduce recurrence in people with BRCA positive status AND those with a family history. I wasn't tested for BRCA (too old!) and there's no family history, but based on the results with this group I figured it was fair to assume it would improve my survival odds. 
The other thing you might want to consider is how your family feels. My husband and daughter were very supportive and would have gone with whatever I decided. After I'd had the mastectomy, they both told me what a relief it was to them.
I chose not to have reconstruction. Like everything else this is a very personal choice. I wanted to be able to detect any recurrence quickly and it seemed to me that reconstruction would complicate this. 
As to your question about mets (spreading cancer), both options are possible. We can all get any kind of cancer in any part of our bodies and the cancer is described by where it originates. If you were to develop a tumour in your liver then a biopsy would be needed to determine if it was local (liver cancer) or TNBC. If the cells are breast cancer cells then it is still called breast cancer, even though it's in your liver and you don't have breasts. So the bottom line is, nothing, not even a double mastectomy, is a 100% guarantee against recurrence, but it can significantly reduce your risk.
My very best wishes with your treatment. I agree with Susanin's advice about figuring out what is best for you and talking with your medical team. I also used to bring a written list of questions and a friend to take notes. Both helped. 
My very best wishes with your treatment and recovery. 
Find me on Wordpress at https://positive3neg.wordpress.com
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bubby56 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bubby56 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2017 at 1:39pm
Thank you for your responses.

I really appreciate the time you have taken to provide me with such detail. It has been very helpful!

-D
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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2017 at 1:58pm
Hi again Bubby56,
I just read another thread on this forum where Susanb shared a link of a very recent study which recommends Carboplatin for people who do NOT have the BRACA gene positive.  So just wanted to correct my note from above.  The link which she shared is http://www.breastcancer.org/research-news/brca-status-may-affect-response-to-treatment and is definitely worth a read.  There may be some other drugs recommended for BRACA positive women, but I do not know what they are.  Also, thinking about your questions, a memory came back to me.  I remember going in for my round-table meetings with the different doctors, and they all told me that a lumpectomy plus radiation is the same as a mastectomy.  It seemed to be a mantra of theirs.  I heard this so many times that I lost count.  However, like stated above, you make the decision which gives you peace of mind.  I'm glad Positive3negative covered the benefits of yoga.  I had never even tried yoga until after my treatments were over, and now I love it!  It builds endurance and I feel a spiritual component as well.  I did not know about the anti-inflammatory effects.  I also take Turmeric for anti-inflammatory.  This is thanks to this forum where it has been mentioned in several threads.  There are many studies regarding Turmeric which show so many positive things.  (You want to take it with black pepper extract to enable full absorption.)  When you have time, please research that as well.  I wish you the best during and after your treatments.  I am so thankful for this forum as we are able to share info and new findings!
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Postive3negative View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Postive3negative Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2017 at 6:58pm
Great advice. You might also like to google 'fasting and cancer'. There's some very interesting research in this area. 
Fasting triggers 'autophagy', a reaction where your body consumes dead and damaged cells. Given that my damaged cells have the potential to turn into cancer this seemed like a good idea to me! I used the 5:2 method and still do. It also helped me to achieve and maintain a healthy weight (something I'd been trying to do for 20 years). Now there's research showing that it might lessen the side effects of chemotherapy and boost the effectiveness. It also lowers human growth hormone levels, which have been shown to be higher in people prone to cancer.
Like every health recommendation I always advise people to do their own research and to speak to their medical team. There's a lot of people out there turning our illnesses into their fortunes and not all of the 'research' is actually research. A lot of it is just anecdotal and profit driven. 
My other important tip came from my oncologist. Eat a healthy diet during chemotherapy but be wary of vitamin supplements and anything with high levels of anti-oxidant. The chemotherapy I was given worked by oxidising cancer cells, so anything ANTI oxidant would have worked against it. I see a lot of advice on taking supplements and concentrated juices during chemotherapy and it's just plain wrong. 

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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2017 at 7:38pm
what about after chemo?  I take biotin for hair growth.  Specifically "It Works" Hair, Skin & Nails.  Is that ok since I am post chemo (last infusion was 3/28/17)?  I don't want vanity to work against me living!!!

Penny
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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