Finished chemo

Thanks Meg.  I have gained a lot reading about what you have been through.  I now see things so clearly.  If there was a positive to this disease it is that I have rediscovered the person I really am.  

Looking forward now, x

Hi Corinna,

I am in a similar position to you. I have TNBC diagnosed end of April, Lumpectomy in May, and now I have nearly completed chemo.

I am also waiting on the results of my genetics test. My surgeon has suggested that if I was positive for the gene, then I would have a risk reducing bilateral mastectomy. If negative, I would have radiation treatment.

I have been thinking more and more about the risk of recurrance, and if I had radiation then I may not be able to have a reconstruction later on if I needed to have a mastectomy. At the moment I think I would like to have a reconstruction if I had a mastectomy.

I agree with wanting to go with the less invasive radiation therapy though.

This is really not very helpful to you - but I just wanted to say I feel the weight of having to make these decisions that you just dont want to have to make!

I wish you well. Hoping that the right information will come your way and that you can come to a decision that you are at peace with (as much as you can be).

Christy xo

 

Hi Corinna

What a devastating diagnosis for your family. Hard enough to have one of you dealing with cancer but two of you must be very difficult.

I was diagnosed with triple negative breast cancer in 2013. I had chemotherapy first followed by breast conserving surgery followed by radiation. My one year scans showed some odd cells so I had another breast conserving surgery. The pathology showed that invasive TNBC had come back in the scar tissue. 

I've asked all of the doctors how this could happen. I've had answers like 'radiation resistant tissue' and 'dormant DCIS' but the most honest answer has been 'we just don't know'. 

Every choice we make has pros and cons. That's part of what I think makes cancer treatment so difficult. What worked really well for someone else might be a disaster for you and there are no guarantees no matter what you choose. At some point we've all just got to pick an option and go with it. 

I had a bilateral mastectomy in August 2014. I was offered tissue transplant reconstruction because radiation meant I couldn't have implants. I decided not to have it and nearly three months after my surgery I'm very happy with that decision. You can read about my reasons for my decision here: http://positive3neg.wordpress.com/2014/07/30/why-im-not-having-breast-reconstruction/comment-page-1/#comment-359

This is my long running blog about everything to do with my treatment. You might find some other bits of it helpful too.

The BCNA have a reconstruction group and a non-reconstruction group and I found both groups were very helpful in helping me to make a decision. I also found it helpful to remember that I can always opt for reconstruction at some time in the future. At this stage I think it's unlikely I'll want it, but if I had I would have been inclined to wait five years. TBNC has a high rate of recurrence and reconstruction takes much longer to heal than mastectomy. I didn't want to be in a situation where I was still healing from reconstruction and the cancer came back. 

I'm certainly hoping to be here for a really long time but I'm pragmatic; having TNBC and having it come back so quickly after treatment means I MIGHT not be here in five years and the less of that I can spend either in hospital or recovering from surgery the better.

Four weeks after my bilateral mastectomy I was back doing modified yoga. Eight weeks after surgery I can almost do everything I could do before it. If I'd had reconstruction I'd still be healing and I was told that, conservatively, I could expect to be away from yoga for between four and six months. 

Lifes too short! And it might be shorter than I want it to be. 

What ever you decide to do you have my very best wishes for a long and happy life. These choices are so personal and there is not 'right' or 'wrong' decision. You just have to do what's best for you. 

Meg

X

Hi Corrina I was in a similar position as you! My sister had BC - hormone receptor positive 3 years ago and I was diagnosed in April this year with TNBC. I had a lumpectomy, chemo and my breast surgeon suggested radiation if I don't carry the gene. My breast surgeon referred me to have the genetics test done. He suggested that if I did carry the gene I should have a double masectomy and ovaries removed, if not then go through chemo and radiation only. While I was doing my chemo treatment the genetics department rang me, asked me questions and then told me the process. They said for me to get it done I had to fill out the family history questionaire and I had to fit the criteria. When I received the questionaire I filled it out and sent it off. I didn't hear from them after a week so I rang them to find out what was going on and explained to them that I need to have the genetics test ASAP because I need to make the decision to have a double masectomy or keep my breast and have radiation and it all depended on the result of the genetics test. Because I fit the criteria and I explained to them that I urgently needed to make my decision as I only had 2 more chemo treatments to go, they gave me an appointment over the phone for the following week to see the genetics specialist. When I saw the specialist they took my blood test and rushed the results through and within 4 weeks I had my results and it was negative! After receiving the results I consulted with my breast surgeon and he recommended I have radiation after my chemo treatment. I have now finished all my treatment and trying to get my life back on track. If you don't get you results soon, give the genetics department a call to see what's going on with your test. Let them know that you're waiting on the results so you can make your decision. I hope you will get your results soon and it will be negative! Wishing you all the best! xxx

Hi Corinna,

I was in a similar situation to you.  I was diagnosed with TNBC last year, my Mother was also battling Stage 4 Breast & Bowel Cancer, my Sister also diagnosed with TNBC.  My Great Aunt, cousin and many more family members with BC.

I had my genetic testing earlier this year - which took 2 months to come back.  Much to everyones surprise it came back negative.  I had already chosen to treat the cancer with Chemo, single Masectomy & Radiation.  I had extermely agressive cancer with multiple tumors ranging from 2cm to 5cm. I only did the gene testing to make some decisions prior to reconstruction.

My Mother has since died and I have not yet had reconstruction.  My advise is to go with your heart, you can always have the masectomy at a later date.

Good Luck - Sue

Hi Corinna,

I was in a similar situation to you.  I was diagnosed with TNBC last year, my Mother was also battling Stage 4 Breast & Bowel Cancer, my Sister also diagnosed with TNBC.  My Great Aunt, cousin and many more family members with BC.

I had my genetic testing earlier this year - which took 2 months to come back.  Much to everyones surprise it came back negative.  I had already chosen to treat the cancer with Chemo, single Masectomy & Radiation.  I had extermely agressive cancer with multiple tumors ranging from 2cm to 5cm. I only did the gene testing to make some decisions prior to reconstruction.

My Mother has since died and I have not yet had reconstruction.  My advise is to go with your heart, you can always have the masectomy at a later date.

Good Luck - Sue

It is hard when we first get the different information and feel like we are not in control of the decisions. 

I had TNBC sept 2012 been thru double mastectomy, then chemo and rads I have chosen no reconstruction. 

I help run a group on facebook called Breast Cancer and beyond, we discuss the options with others support them as they make decisions and laugh cry and vent if we need to. 

Happy for you to come join our group ask questions get some answers and maybe have the opportunity to see more clearly what decisions you would like to make.

It is a journey we dont chose but we are strong and I know that you have a support network already around. 

Fire any questions at the blog here or the group on Facebook and we will all try to support you. 

take care 

Alice aka Soldier Crab