CHOICES

Thanks so much for your responses, what an amazing community of support x

I totally agree that making these decisions can send us mental. I had mental break downs many times for the last few weeks when I was facing choices of radiotherapy, unilateral or bilateral mastectomy based on my post lumpectomy pathology results. I was told to follow my gut feelings by the breast nurse. I was so upset and wondering what and where my gut feeling was while riding on this emotional roller coaster.

I just had a genetic consultation and bloods taken today. It takes 6 weeks to get the results back. I was so grateful that I was seen by a breast surgeon as part of the genetic counselling. I walked out of the door with a clear plan. 

Anne, I totally understand how you are feeling now. It's the most uneasy decisions to make. I was diagnosed with invasive lobular cancer just before last Christmas and had lumpectomy. I was 40 years old. I had the feeling of get rid of everything as quickly as possible after given choices of radiotherapy or mastectomy. As time passed, I actually has changed my mind with all the information I gathered. I don't know if it's the right decision, but I am happy with the decision I made at this point of time. Wishing the very best with your decisions! 

Lots of love and hugs for you! 

Hi @Jailbirdstreet, Everyone's bodies and diagnosis are different but the nipple sparing mastectomy worked out beautifully for me. I dont think the procedure has been around for that long and I'm not sure if having this type of mastectomy is dependent on any other factors such as breast size etc.  My incision is under the breast so pretty much invisible.  Perfect size match to my healthy breast.  I'm only small so both are equally perky but I'm sure that will change in time!  My reconstructed breast and nipple are numb with just a couple of small areas with sensation.  My nipple still responds to pressure but I've been told that is just a result of the pec muscle under it.  It's been 7 months now and it is softening nicely and most of the stitches I could feel beneath the skin are gone.
Have a chat to your surgeon to see whether this is an option, we are fortunate to have all the choices we do. Wishing all of you needing to make similar decisions all the best.  Jane xx

It's disturbing to see so many comments on this thread that start out with a surgeon advising against an 'unnecessary' mastectomy and end up with emergency everythings and complete disbelief and shock. I don't understand how we keep getting told everything will be fine when it is patently beyond anyone's skills to make such statements. No wonder making these decisions can send us mental.

@Jailbirdstreet
 these is a group for reconstruction they have lots of information in this group ..http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

you will need to ask to join the group another good link is reclaim your curves. http://www.reclaimyourcurves.org.au
Not inappropriate to jump in at all... 

we are supportive and will always help you find the information you are needing .... 

Alice 

Hi Twiggyjumps and all, this is interesting to me as I had a lumpectomy + axillary dissection + reconstruction (no implant) 10 days ago but was told this morning that they found Ductal In Situ Carcinoma with 2 Foci during the surgery in addition to the Invasive Carcinoma they were removing, now they recommend a mastectomy. I am in shock as the surgery went really well and I was so pleased with the look of my breast and getting my head around losing it is tough. 

I am am picking up from responses here that potentially they could still conserve my nipple and reconstruct the breast?

 The axillary dissection found zero lymph nodes involved so I naively hope/want to believe this means it's not spread yet...although I am have a CT guided biopsy to check out a mystery lesion on my spine. 

Sorry if it is inappropriate to jump into this thread, I am new here :) 

Welcome Twiggyjumps, I wanted a mastectomy but surgeon said it wasn't necessary so had lumpectomy.  Pathology came back worse than expected so had mastectomy with lymph node removal last August. I wouldn't have been happy anyway as my breast was about half the size of the other one after lumpectomy. I am having the other breast removed & reconstruction of both later this year. Have just finished chemo & soon to start radiotherapy. My surgeon said removing the other breast doesn't improve survival rates but my tumour wasn't picked up on mammogram as it was hiding behind dense breast tissue & I don't want that to happen again on other side. It is a hard decision, good luck!

Hi @Twiggyjumps, sorry you find yourself on this forum but welcome. These early days can be overwhelming!  You are still reeling from diagnosis and have information overload and some pretty big decisions to make. As the other ladies have said, just go with your gut feeling. We have all been where you are but have made individual decisions that are right for us.
I had a left nipple sparing mastectomy with immediate silicone implant on 1/8/16. (Stage 1, grade 1, Er/Pr +) I had a wonderful surgeon who took the time to explain my options.  I'm not big breasted so a lumpectomy wouldn't have been good cosmetically but more importantly I was worried about getting clear margins.  My GP sent me for an MRI before I saw the surgeon to get a clearer image of the cancer but also to make sure the other breast didn't have and cancer or unstable tissue. Thank goodness the right side was fine.
I asked about removing both breasts but my surgeon said I had the same chance as the next woman of getting cancer on the right side. Now I am taking Arimidex (a hormone blocker) my percentage has reduced even more.
Wishibg you all the best with your decision, there is a lot of strength and support here for you.
Jane xx

My first reaction was get them both off and good riddance with no reconstruction but my doctor said, for me, there was really no need to take the perfectly healthy one. He was also reluctant to do a single mastectomy preferring instead to do a lumpectomy but my gut told me to stick with a mastectomy. As it turned out I was right, the other side of the breast had already started to get some abnormal cells started. Do whatever your gut tells you.

Twiggyjumps ... Your Dog yes ... hell my dog (little bichon) slept when I slept and if I was ghastly etc she would trail behind me 3 paces behind.... Prior to my treatment she was my daughters baby... slept in my daughters room etc etc.
But when I got home from surgery she never left my side.... now 4 years later my daughter has to close her door if she wants Lucy to stay in her room. 
We lived in a big farm house with double brick while I was sick
my bedroom was at one end.... living the other I had no voice on chemo, she would  run and get the kids to come and help me.  She got them when I collapsed in shower the first time.... Chair in shower after that.  Dogs/cats are very good at helping us to relax.

we all cope differently with our chemo drugs.... I was a mess I had allergic reactions after allergic reactions but I do that with regular drugs also.... 

I want to give you hope 4.5years later I am NED (no evidence of Disease) getting on with life.  For me I chose no recon as I have allergies to most things in life. I dont miss the 8kg they took away on 25/10/12. in fact now my back and neck problems are gone that I had prior to surgery. 

Try to speak with a Breast Care Nurse she will break it down for you and also can refer you to a Social worker/ or Psychologist to be able to discuss with no holds barred the choices you are facing... 

Hugs and energy for today 
Alice xoxo