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Triple Negative: Your Story, Survival, Treatment, Research..

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by ashcon on Oct 13, 2019 10:32 am

Hi BonBon2453‍ 
​​​​​​
The timing of our treatment and our diagnosis was very similar, I believe. I was diagnosed with TNBC  Stage 3, in Jul 2017. 
But I was not offered any preventative medication when I finished treatment in Apr 2018.
What medication were you given? 
What province are you in? (I'm in Ontario).  

I've heard of some TNBC patients being offered Zometa or Zoledronic acid as a way to prevent Mets to bones. Is that what you were put on? 

Thank you! 
Ann (ashcon) 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by BonBon2453 on Oct 13, 2019 8:04 pm

Hi there..the preventative drug was called capecitibine..hope you are doing well.

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by BonBon2453 on Dec 29, 2019 2:57 pm

Hi there ash on.  Merry Christmas and Happy New Year to you and yours.  I’ve just finally come back to the site and realized I had unanswered comments.  Yes, the capecitabine was given to me because my margins were very close to my chest wall after surgery.  So far, so good.  I have a muga scan at the end of January, and then three month check up with the onc in February.  I will be having another surgery this spring, as one of my implants (on the non affected side) “dropped and fluffed” as it was supposed to, but my radiated side is tight, smaller and still sore by my rib cage.  I believe my surgeon is going to lift the good one, however, I sometimes wonder if it would be better to explanation and go flat..thanks for being there.

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by BonBon2453 on Dec 29, 2019 2:58 pm

Sorry, my fingers do what they want..this should say to Ashcon 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by ashcon on Dec 30, 2019 9:01 am

Hi BonBon2453‍ 
​​​​​​Thank you for the update. I am doing well, thnx for asking. I hope you are as well. 

PS:  I stumbled upon this reply of yours by chance. If you wish to tag someone so that they are alerted to your reply, simply type the "@" symbol before the first few letters of their username.  Matches will show up in a list that appears on your screen, and you simply select the member that you intend to tag. You know it was successful when their name appears in blue, underlined font. 

Health, peace, prosperity, and happiness to you and yours. 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by BonBon2453 on Dec 30, 2019 12:15 pm

Thank you ashcon‍ , for the navigation advice..I think I have it now, lol.

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by Tatyana on Dec 30, 2019 10:45 pm

My story...
I’m 47 years old. My husband found a lump in my right breast in October 2019. We were worried but I had no history of cancer of any kind in my family. I have had several tumor/cysts removed from my body so we assumed it was just another one of those. WRONG. Hearing I had stage 1, T3 triple negative breast cancer that was 2.3cm is still hard to wrap my head around.  I have very dense breasts so we did a mammogram, ultrasound and biopsy all in the same day at the hospital. Barely had time to process what was happening before I was escorted off to the next test. I guess that is a good thing as I had a diagnosis and tumor / lymph node removal in a matter of weeks. It’s the end of December and I’m a week away from my third round of CT Chemo.  We decided to do 4 rounds of Chemo then 30 rounds of radiation. Having no history with family or friends who have had cancer I feel like I’m bumping around in the dark. I started to look online but the information is all over the place and quite frankly terrifying. I go between feeling like I’m in a weird dream to being completely overwhelmed. I’m exhausted and a weepy mess at times. Trying to stay positive. I have 2 kids (10 & 12) I’m tying to keep them from getting scared but also trying to let them get involved so they feel more in control. Can’t help feeling like I’m letting them down. But they have been troopers. One day at a time, I guess… I was told about this website and I’m taking comfort in some of the stories you have all shared here. Thank you for that...It really means a lot. 
 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by Trix41 on Dec 31, 2019 5:41 am

Hi.  I am 46. Found a lump in a routine mammogram of 1cm.  My mammograms show cysts usually but last year they found something  that needed further screening. This year the something warranted a biopsy.  The results were a 1cm tumour andno lymph involvement. The surgeon could not find the lump by feel and was so surprised. I also have dense breasts. So basically I was fortunate  to have an excellent  radiographer. 
in surgery, they found a 3.5 cm tumour that was difficult  to get clear margins.   The surgeon had to take margins 3 times. No lymph involvement so stage 2.
I am on the ACT protocol  because of the size of the tumour, difficultly in getting clean margins, oncotyping and age.
no family history. Genetic  testing for BRCA 1 and BRCA 2 negative. I was tested because of my family heritage in Eastern Europe.

Have reached out to Wellsping.ca?  They have been a fantastic  resource for me

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by ashcon on Dec 31, 2019 8:37 am

Hi Tatyana
I'm glad you found this site, and glad you are taking comfort from the posts,  though none of us want to be here! 
​​​​​​TNBC is tricky and nasty, but thank goodness for your husband and for catching it early. The chemo protocol is usually quite effective at dealing with TNBC - the only downside is there's no post treatment medication to take (like tamoxifen or herceptin) to keep "the beast" at bay  so we have to be very good about our diet and lifestyle choices in hopes that will be enough! 
My tumour was also about 2.3cm, but it had advanced to several nodes, so I was told I was Stage 3.  So I completely understand what you say about being a weapy mess!
Good to hear that you are involving your kids. At that age they are quite savvy. Did you see this article about Talking to Children About Cancer  ? It's broken out by ages and has some good tips. 
Question: in what way(s) do you feel you are letting them down? 

Trix41‍  warm welcome to you as well! You are indeed very lucky to have a good radiographer! 
That's great news that your nodes were clear! Though I'm sorry to hear there was such an effort to get clear margins. 
How are you tolerating the ACT treatment? 
Unless I missed it or you posted it elsewhere, are you triple negative as well? 

You both mention lack of family history and having dense breasts. Being in that same boat myself (including genetic testing that didn't flag anything of noteworthy interest) I learned that having dense breast tissue is, in itself, a risk factor - even moreso than family history.
In fact if you have are in the highest category of density (Category D with 75% or more density)  your risk for breast cancer is 4-6 times higher than a woman who has low density or "fatty" breasts. 
More info can be found through Dense Breasts Canada
Personally I fell into Cat C with 50-75% density and my tumour was not seen just 6 months before my stage 3 diagnosis. 
Yup, I was a bit angry. 

Wishing you both a healthy, happy 2020 and strength through sharing and giving of your experience to others going through this darned diagnosis. 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by Tatyana on Dec 31, 2019 10:17 am

Hello ashcon‍ 
I’m sorry to hear you are also going through this. I’m grateful for your post. Lots of great information. I’ll have to read the link for talking to kids. I know it’s ridiculous and irrational but I feel sometimes like I’m letting my kids down just having cancer. Talk about the ultimate mom guilt! The rational side of my brain says you didn’t choose this, you live a fairly healthy life, no smoking, less then 5 drinks a year, I eat fairly healthy, live an outdoor lifestyle. Then the irrational side of my brain hears my husband whisper in the hall “Mom is too sick today” Or I see my daughter wearing the same clothes 2 days in a row with bedhead and a bowl of jujubes at 10pm and I think I should be doing more. I love my husband and he is doing awesome holding down the fort but his parenting style runs along the line of “Frat House” LOL 😊 I know these sound like silly things compared to fighting this stupid disease but still sometimes it’s hard to shut my brain off and just focus on the fight.  Thank you for letting me know about the breast density article. I had been told before I had C density but I didn’t really know what that meant as it related to cancer.
Trix41‍ 
Thank you for sharing your story. It sounds like we are close to the same age going through similar fights. My doctor pushed us away from ACT Chemo. He made us feel like CT Chemo was basically the only option. How has it been for you? I’ve read a little about it and I’m not sure why he did that. I also know very little about genetic testing.  My Dr. said it was not something to worry about and I could look into it later. I have 5 sisters all with dense breasts. Perhaps we should all be looking into  it now…
 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by Trix41 on Dec 31, 2019 2:21 pm

Hi

I have Her+ breast cancer so I am in a different boat.  So far I have had 2 cycles of AC (doxorubicin and Cyclophosphamide). I seem to be tolerating it ok. In the first 4 days I get tired st about 11am. I have a nap and am good till 3. Have another nap and good till 8pm. Then I sleep for 11 hours.  On day 5 I wake up!
 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by Essjay on Jan 1, 2020 9:21 am

Hi Trix41‍ glad you found this site.

i was 49 at diagnosis (July 2018) - found a lump myself after trying on new gym gear and thinking one boob was bigger...it wasn’t visible on my mammogram, but it was 2cm so palpable. My breast density is category D. I had a multifocal tumour (multiples) IDC and DCIS together. Triple negative. No family history and genetics showed no hereditary genes. I had a partial mastectomy and sentinel node biopsy, then ACT chemo dose dense - I was told this was the best choice for my tumour type. If you were steered away from this regimen there may have been other medical factors - you have to have a fit heart to stand the treatment for example. It wasn’t too bad, radiation wasn’t too bad. I’ve worked hard to recover my fitness since - I’m off to run this morning!

ashcon‍ has shared the dense breast info - I encourage your sisters to get their mammograms done and ask questions about how they will be monitored. I had my first follow up mammogram in November. They told me that they use the first to compare with, and this is generally effective even for dense breasts. In TNBC recurrence locally is less likely, but we remain at risk of new tumours, especially with dense breasts. But we will be checked annually.

im on Zometa as a Mets preventative and to treat osteoporosis and I have infusions and a full clinical exam every 6 months, which I find reassuring.

good luck with the chemo - keep asking questions, there’s always someone who will answer. Essjay xx

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by ChemoSucks on Jan 1, 2020 10:27 am

I was diagnosed with stage 3 TNBC in one breast in June 2019. I am 33 years old. Did 4 months of chemo and went for a bilateral mastectomy because my genetic testing uncovered a gene called RAD51C which MAY be linked to BC but has a link to ovarian cancer for sure. Unfortunately my oncologist is recommending another 6 bloody months of chemo after the pathology report came out. But I have a decision to make regarding radiation. My medical team is not strongly pushing for it, so I'm super confused if I should do radiation and chemo or just chemo.

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by Elsie13 on Jan 2, 2020 12:39 pm

Essjay‍  , ashcon‍ , Picasso’s mannequin‍ , Do you have any thoughts for ChemoSucks‍ , regarding radiation treatment? 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by ashcon on Jan 2, 2020 1:52 pm

Hi ChemoSucks

I'm not sure why your medical team is signing you up for an additional 6 mos of chemo, but not pushing for radiation. Does that have something to do with the genetic test results? 
And the fact that you had a double mastectomy? 

Radiation was a 'given" for me, despite also having a prophylactic double mastectomy.... This just goes to show how different our treatment plans can be despite having the same, or very similar, diagnosis!

Will the chemo regime be the same cocktail that you had before? 
Are they suggesting removal of your ovaries? 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by Essjay on Jan 2, 2020 1:59 pm

ChemoSucks‍ I had radiation because I had a partial mastectomy, and radiation was considered necessary to ensure all signs of the tumour were gone. If you had a mastectomy and the margins are good, they may not consider it beneficial. Remember that radiation comes with its own side effects - lung damage, possible heart damage (if left side), skin damage, bone damage, and higher risk of future cancers.
Im sorry you have to have more chemo - what is the regimen you are on?
Best wishes
Essjay

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by ChemoSucks on Jan 2, 2020 10:25 pm

Essjay‍ 
I was very worried about the side effects of radiation when I was told that I should do it. Yes pathology report showed clear margins. My chemo (starting in a week) is an oral pill for 6 months.  Side effects include fatigue, mouth ulcers and hands and feet cracking. Yay! Happy new year to me!

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by ChemoSucks on Jan 2, 2020 10:29 pm

ashcon‍ my pathology report showed that from the first time I did chemo, the tumour only shrunk by 50% instead of completely going away. Due to this my oncologist is worried about recurrance and hence why another 6 d*** months of chemo!
Yes they are recommending removing my ovaries when I'm 42-43. This sucks because my oncologist is warning me against getting pregnant within 5 years -which means when I start trying to conceive I'll be 39. I will only have a couple of years to try before I remove my ovaries. 
 

Re: Triple Negative: Your Story, Survival, Treatment, Research..

Posted by ashcon on Jan 3, 2020 5:38 pm

Hi ChemoSucks‍   Aargh, I'm sorry to hear that the pathological response on your tumour was not 100%.  Forgive me if I missed it, but did you decide on radiation - yes or no?  If not, when do you have to make that decision?
I wish you tremendous health and peace of mind to get through this arduous journey.   We're here for you!