Anxious wait for breast surgery : Triple negative / Brca 1

by | Apr 9, 2019 | Uncategorized | 0 comments

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Anxious wait for breast surgery : Triple negative / Brca 1

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27 posts since

8 Jan 2019

It’s been a while since I last posted but I have now completed my 6 rounds of chemotherapy for grade 3 Triple negative breast cancer.

I had the  results back from my Mri scan which I had just before my final chemo, and I have had a complete response meaning that there is no evidence  of the disease  remaining.

My  anxiety is from having to wait until 1st May for a wire guided biopsy  and also an axillary  node clearance  as I had 2 nodes  affected. I’m worried that the cancer may begin to grow back,  as by the time I have the surgery it would have been almost 6 weeks since the last chemo.

During this  time I have also  received the dreaded news that  I’m a Brca 1 carrier which was the most likely  cause of  my triple  negative  cancer.

My mum died  23 years ago of ovarian cancer.

I am 48 with 3 children 4, 5 and 12 and a lone  parent with very little  support around me.

My genetics counsellor  told me I have a 50% chance of  developing  another  primary  breast tumour  and a 40% chance of ovarian  cancer.

I’m  really  worried about what to  do for  the best as my consultant  said that my chance of a reoccurence  is slim taking into account my complete response  to  chemotherapy hence I’m booked  in for  a lumpectomy  as opposed to a double masectomy but genetics say different.

I had the  cancer in both  breasts and am  due to have radiotherapy  after surgery.

It was difficult deciding as I was pulled towards a double masectomy with reconstruction  initially but have read theres no difference  in survival rates between lumpectomy   with radiation  and masectomy and my major concern  is also  the practical side of things would  make double  masectomy very hard for me with no  help  on hand and with the children being so young.

It  may mean that I go  for the double mastectomy  at a later date and just have what I’m booked in for now.

My breast nurse has also referred me to another  hospital to discuss  ovary removal because of the increased  cancer risk with the brca gene.

 

I feel in a dark place  right now  and completely  overwhelmed  with everything.

I still  can’t believe all this is happening to me.

Does anyone please  have any advice please?

I’m constantly  fearing that I won’t be around to see my children  grow  up and I can’t bear that thought.

Thanks

1827 posts since

11 May 2016

Hi mumof3angels, 

I’m really glad that the chemo has worked although I’m sorry about the worries that are now playing on your mind as a result of finding out you’re a BRCA carrier. 

Mnay of our breast cancer ladies have also found themselves with difficult decisions to make on their journeys and hopefully some of them will reply soon to share their thoughts and experiences with you.

Our cancer nurses are available by phone if you’d like to talk things through with them as well. You can call them on 0808 800 4040, Monday – Friday between 9a.m – 5p.m.

Kind regards, 

Steph, Cancer Chat Moderator

867 posts since

14 Dec 2018

Hello,

gosh what a lot to take in and deal with! My route was pretty straight forward ( thank goodness) lumpectomy, chemotherapy, rads, meds…..I’m currently halfway through chemo….

It must have been a total shock to find your carrying the gene. Do you have daughters? 

Im also sorry to read your dealing with this on your own, this is all so difficult to deal with when you have support! I suppose we have no choice but to trust in our experts, and to hand ourselves over to them…..

I wish I had good solid advice but I can only offer support, this is a good safe place to rant , there are many of us breast ladies on here and I’m sure others will be along shortly……

And before I forget….I’m so pleased you’ve had a good response to chemotherapy! And I completely admire you going through it on your own with children to manage too…your amazing…..xxxx

27 posts since

8 Jan 2019

Hi Marlyn

Thanks for your reply and I’m glad you have reached the half  way mark with your chemo.

I remember it  being such a relief for me when I reached that stage.

It won’t  be long  now until your finished so keep that in mind when the going gets tough!

Regarding the Brca gene, Yes I have two daughters age 4 and 5 and a son age 12.

They are my world and that’s why this journey is so hard for  me.

My double  lumpectomy (wire guided biopsy) is  booked  for 30th April with a one night hospital stay and I am having axillary  node clearance  at the same time.

Radiotherapy  will follow weeks later.

Since finding  out about the Brca gene my anxiety has got  worse, and I guess  I’m  worried about the 6 week delay from finishing chemo to having surgery  which I was told was due to them having to wait for  the wires.

I’m scared the  cancer will grow back during this time and also  all the breast pain since  finishing  chemo, although I guess these could be side effects from the chemo still.

Wishing you all the best for  the remainder  if your chemo. 

Karen 

 

Anxious wait for breast surgery : Triple negative / Brca 1

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