Hi all, this is my first post. I have been reading other people's posts on here and have found them to be very helpful and inspirational, you are all amazing women. My story began when I found a lump in my right breast. Mammogram, ultrasound and core biopsy followed, biopsy pathology stated it was weakly progesterone positive and was in one lympth node. This was followed by wide local excision (13/6/14) and all of my lympth nodes removed from the right arm. Pathology has come back as triple negative ( apparently the biopsy pathology results must have been an error) and that only the one lympth node was involved. I am told that it is stage 3 and grade 3. I am seeing the oncologist in 2 weeks and am trying to research as much about TNBC as I can so that I can look at all of my options to discuss with him. I am wandering if I should opt to now have a double mastectomy and reconstruction, rather than just go along with the current plan of chemo and then radiation, as the risk of reoccurrance is so high with TNBC. I'd really loved to hear other women's stories who also had TNBC and what you chose to do. Thank you for reading and thanks in advance for any advise you can offer me. Karen

Hello Karen I was diagnosed with triple negative breast cancer stage 3 grade 2 last december. As my lump was quite large, my surgeon suggested chemo first to shrink the cancer as this type of cancer is known to respond well to chemo. The lump did shrink considerably then I had a lumpectomy. I needed a second surgery because the surgeon didn't get clear margins the first time. He also removed all of my lymph nodes. 17 out of 27 had cancer. I am meeting with the radiologist tomorrow as I am having six weeks of radiotherapy which will conclude my treatment. I went with what my surgeon and breast care nurse suggested as they are the ones with all the up to date knowledge. Lisa xx

Thanks so much for your responses Lisa and Michelle. I have now joined the TNBC group and am currently going thru all of the blogs and you are right Michelle there is a wealth of information there. Like you both say I'm sure the oncologist will advise what is best for my situation. OMG there is so much to think about but I'm staying positive. I wish you both all the best in your own journeys too Cheers Karen xx

Hi Karen, I was diagnosed with triple neg last year following a routine breastscreen (my first!) that found four tumours in my left breast. Like you, my first thought was mastectomy. My sugeon told me that she would happily give me one IF it would give me a better chance of survival BUT IT WOULDN'T. This was a revelation to me. It turns out that the survival rate for women having a mastectomy and chemotherapy is no better than the survival rate for women having breast conserving surgey, chemotherapy and radiation. Some women opt for a mastectomy to avoid radiation but I was going to need it regardless of the type of surgery I had. One of the arguments that appealed to me the most regarding treatment was this: all of us have cancer cells circulating in our bodies (everyone - not just those of us with a diagnosis) and triple negative likes to spread, but it also prefers breast tissue. It was suggested to me that keeping breast tissue was a good idea because any recurrence was most likely to be in the breast and this was a much better option than, say, my brain or my spine or anywhere else for that matter. My one year check up found some suspect calcification and I'm due to go back into surgery next Wednesday to have it removed. Someone recently asked me if I was sorry I didn't just go with a mastectomy. I'm not sorry. Although at the start I was in the "Just chop them off" camp, I now realise what a difference it makes to my body image and my recovery. Mastectomy is major surgery. It's also possible that if I'd had the breast removed I might now be looking at suspect cells in my other breast, or in some other part of my body. My sugeon tells me she'll be able to remove the new suspect cells by going in through the same scar and that she'll then lift the breast so that it's a better match to my other (naturally smaller) one. I know there's a limit to how many times we can do this but I intend to keep as much breast tissue as I can for as long as I can. I have kept a blog all the way through my treatment and it includes all of the tips I have for coping with various stages of treatment. If you're interested you can read it here: http://positive3neg.wordpress.comThere's also a very good site for triple neg here: http://www.tnbcfoundation.org It's not an Australian site but still a great place for informaiton and current research. I'm a great one for chosing really good doctors and listening closely to their advice but ultimately I believe we all need to take responsibility for our own health and to make decisions that we're comfortable with. Other people in my situation have made different choices. Everyone finds their own path and you will too. My very best wishes to you. It's not all bad. Personally, I've never felt more loved or supported. I hope you find some joy along the way. Meg x

Hi Redtiger, Such a tricky decision!! Everyone has their own story and their own decision to make. And whats happened in our lives and who we are will all be important in making that decision. As long as you make the decision that you are happy with that is really the most important thing. The cancer surgeons and the breast care nurses really do know what they are talking about - but seek second opinions if you like confrimation - or exposure to different ideas. Its worth finding out other opinions. Its such a big decision. My story is a bit different - I'm TNBC, grade 3. I had lumpectomy and auxillary clearance (only 1 of 14 lymph nodes malignant) 23rd May, and have started on chemo (dose dense AC followed by Paclitaxel with carboplatinum). But I've got the BRCA1 gene. I've been told there is very low chance of a reoccurrence because they got it - especially after the chemo etc. But that there's a 80% chance of a second cancer developing. My surgical team strongly recommend a bilateral mastecomy after chemo. I'm pretty devastated about it, but don't think I can go through this again with the odds so high of it actually occurring. My point is - my risk is really high and yet I still cling to the hope that I don't have to have the mastecomy. So I understand how tricky the decision is (from a differnet perspective). If the risks weren't so high for me, I wonder if I'd be still contemplating - quite possibly I would because I don't want this again. Possibly my negative reaction to the bilateral surgery is partly grief. Anyway, there are so many amazing woman on this website that have been through this and many other proceedures - truly they are inspiring. When I'm losing heart with the whole process - I read some of these ladies stories and realise what amazing people are out there - and that gives me hope and heart. Good luck with everything. I really wish you the absolute best. leonie xo

Triple negative cancer - what are the options?

Mia1965
Member
11 years ago
Hi Redtiger,

My name is Mia. I am a survivor of BC for three years now. I had FEC-D treatment which I found very hard to get through. Lots of side effects and sickness made for an interesting journey.

If you would like to know more about my treatment, just let me know ok?

All the best to you huny and good luck with your treatment too!!!

XXXMiaXXX
JessicaV
Member
11 years ago
There is a great section on TNBC on breastcancer.org including this article by a woman with TNBC who had the same "weak progesterone" diagnosis you started with, Redtiger.

https://community.breastcancer.org/blog/you-can-survive-triple-negative/

Friends with this diagnosis have found the group and the forum there very helpful for uptodate information and massive group support.

Best wishes

Jessica
Anonymous
11 years ago
Hi Ingridekoala,

As Michele said below - you are definatelly a member of the Triple Negative Breast Cancer group it might have just been when you tried to access it you were not logged in and were given the 'Access Denied' error message. Here is a link to the group - http://www.bcna.org.au/group/16948 -- Please let me know how you go. Cheers, Daina
Michelle_R
Member
11 years ago
You are definitely in the Group - I just checked the list of Members - so do try again. Maybe it didn't register immediately.

I am TNBC also, 2 years ago I finished chemo and surgery and am living my "new normal" and enjoying life. There is light at the end of the tunnel. I hope all gets underway with your chemo plan - the sooner you start the sooner it's finished. I hope you will be like I was, and not have any major side effects.

Let us know how you are going. Have you moved to WA since surgery? All the best - will be thinking of you. Big cyber hug. Michelle x
ingridkoala
Member
11 years ago
It's comforting to read TNBC blogs. I Joined TNBC Group and also was Denied Access. Oh well. I have been blissfully ignorant of TNBC. During the long hours of tonight I have learnt so much. My Mastectomy was on 4 July in Qld. I am seeing my WA Oncologist later today - a tad nervous about it all. On which Chemo Plan and how to prepare to the max for my expected. If any, side effects. Reading the blogs puts my foolish anxiety into perspective. Many many lovely ladies have endured so much - and many more will be just like us. These blogs will be great comfort.
LeonieV
Member
11 years ago
Hi Redtiger,

Such a tricky decision!! Everyone has their own story and their own decision to make. And whats happened in our lives and who we are will all be important in making that decision. As long as you make the decision that you are happy with that is really the most important thing. The cancer surgeons and the breast care nurses really do know what they are talking about - but seek second opinions if you like confrimation - or exposure to different ideas. Its worth finding out other opinions. Its such a big decision.

My story is a bit different - I'm TNBC, grade 3. I had lumpectomy and auxillary clearance (only 1 of 14 lymph nodes malignant) 23rd May, and have started on chemo (dose dense AC followed by Paclitaxel with carboplatinum). But I've got the BRCA1 gene. I've been told there is very low chance of a reoccurrence because they got it - especially after the chemo etc. But that there's a 80% chance of a second cancer developing. My surgical team strongly recommend a bilateral mastecomy after chemo. I'm pretty devastated about it, but don't think I can go through this again with the odds so high of it actually occurring.

My point is - my risk is really high and yet I still cling to the hope that I don't have to have the mastecomy. So I understand how tricky the decision is (from a differnet perspective). If the risks weren't so high for me, I wonder if I'd be still contemplating - quite possibly I would because I don't want this again. Possibly my negative reaction to the bilateral surgery is partly grief.

Anyway, there are so many amazing woman on this website that have been through this and many other proceedures - truly they are inspiring. When I'm losing heart with the whole process - I read some of these ladies stories and realise what amazing people are out there - and that gives me hope and heart.

Good luck with everything. I really wish you the absolute best.

leonie xo
LeonieV
Member
11 years ago
Hi Redtiger,

Such a tricky decision!! Everyone has their own story and their own decision to make. And whats happened in our lives and who we are will all be important in making that decision. As long as you make the decision that you are happy with that is really the most important thing. The cancer surgeons and the breast care nurses really do know what they are talking about - but seek second opinions if you like confrimation - or exposure to different ideas. Its worth finding out other opinions. Its such a big decision.

My story is a bit different - I'm TNBC, grade 3. I had lumpectomy and auxillary clearance (only 1 of 14 lymph nodes malignant) 23rd May, and have started on chemo (dose dense AC followed by Paclitaxel with carboplatinum). But I've got the BRCA1 gene. I've been told there is very low chance of a reoccurrence because they got it - especially after the chemo etc. But that there's a 80% chance of a second cancer developing. My surgical team strongly recommend a bilateral mastecomy after chemo. I'm pretty devastated about it, but don't think I can go through this again with the odds so high of it actually occurring.

My point is - my risk is really high and yet I still cling to the hope that I don't have to have the mastecomy. So I understand how tricky the decision is (from a differnet perspective). If the risks weren't so high for me, I wonder if I'd be still contemplating - quite possibly I would because I don't want this again. Possibly my negative reaction to the bilateral surgery is partly grief.

Anyway, there are so many amazing woman on this website that have been through this and many other proceedures - truly they are inspiring. When I'm losing heart with the whole process - I read some of these ladies stories and realise what amazing people are out there - and that gives me hope and heart.

Good luck with everything. I really wish you the absolute best.

leonie xo
positive3negati
Member
11 years ago
Hi Karen,

I was diagnosed with triple neg last year following a routine breastscreen (my first!) that found four tumours in my left breast. Like you, my first thought was mastectomy.

My sugeon told me that she would happily give me one IF it would give me a better chance of survival BUT IT WOULDN'T. This was a revelation to me. It turns out that the survival rate for women having a mastectomy and chemotherapy is no better than the survival rate for women having breast conserving surgey, chemotherapy and radiation. Some women opt for a mastectomy to avoid radiation but I was going to need it regardless of the type of surgery I had.

One of the arguments that appealed to me the most regarding treatment was this: all of us have cancer cells circulating in our bodies (everyone - not just those of us with a diagnosis) and triple negative likes to spread, but it also prefers breast tissue. It was suggested to me that keeping breast tissue was a good idea because any recurrence was most likely to be in the breast and this was a much better option than, say, my brain or my spine or anywhere else for that matter.

My one year check up found some suspect calcification and I'm due to go back into surgery next Wednesday to have it removed. Someone recently asked me if I was sorry I didn't just go with a mastectomy. I'm not sorry. Although at the start I was in the "Just chop them off" camp, I now realise what a difference it makes to my body image and my recovery. Mastectomy is major surgery. It's also possible that if I'd had the breast removed I might now be looking at suspect cells in my other breast, or in some other part of my body.

My sugeon tells me she'll be able to remove the new suspect cells by going in through the same scar and that she'll then lift the breast so that it's a better match to my other (naturally smaller) one. I know there's a limit to how many times we can do this but I intend to keep as much breast tissue as I can for as long as I can.

I have kept a blog all the way through my treatment and it includes all of the tips I have for coping with various stages of treatment. If you're interested you can read it here: http://positive3neg.wordpress.com

There's also a very good site for triple neg here: http://www.tnbcfoundation.org It's not an Australian site but still a great place for informaiton and current research.

I'm a great one for chosing really good doctors and listening closely to their advice but ultimately I believe we all need to take responsibility for our own health and to make decisions that we're comfortable with. Other people in my situation have made different choices. Everyone finds their own path and you will too.

My very best wishes to you. It's not all bad. Personally, I've never felt more loved or supported. I hope you find some joy along the way.

Meg

x
Redtiger
Member
11 years ago
Thanks so much for your responses Lisa and Michelle. I have now joined the TNBC group and am currently going thru all of the blogs and you are right Michelle there is a wealth of information there. Like you both say I'm sure the oncologist will advise what is best for my situation. OMG there is so much to think about but I'm staying positive.

I wish you both all the best in your own journeys too

Cheers

Karen xx
Redtiger
Member
11 years ago
Thanks so much for your responses Lisa and Michelle. I have now joined the TNBC group and am currently going thru all of the blogs and you are right Michelle there is a wealth of information there. Like you both say I'm sure the oncologist will advise what is best for my situation. OMG there is so much to think about but I'm staying positive.

I wish you both all the best in your own journeys too

Cheers

Karen xx