Forum Discussion

Heather2014's avatar
12 years ago

Recently diagnosed triple neg & due for masectomy

Hi

I've been reading a few posts which has been really informative and positive. Thank you.

Recently I was diagnosed with BC, which was a whirlwind on first mammogram to lumpectomy and auxillary clearance.

Initially it was difficult to understand how I could get BC as I had no family history, recently finished breast feeding my last baby and eat fairly well. Now I'm ok with it, by example of having drawn the short straw of 1 out of 8 women getting BC.

After my surgery I was called in a week early to the surgeon and told that my breast wasn't clear of cancer and now we needed to do a masectomy. It was quite a shock. My results had also changed in that from the biopsy I was told I was estrogen positive but now from the lumpectomy results I was triple negative. I don't really understand how it can change, so hoping to get some answers from the doctor.

Now the shock of needing a masectomy is over  I have booked a appoint with the surgeon to see if I can get my other breast removed too at the same time. As I feel quite uneasy about it getting BC in that one too. Really not sure if the doctor will do this or not.

Good news is though that I won't need radiation, only chemo. Would rather not chemo as well, but also don't want any of those cancer cells running around my body anymore.

Anyway hoping when my treatment starts, it goes by super fast. There is never any time for the mum to be sick. I have 4 children and a wonderful husband, and am planning ahead to when this BC is behind me.

6 Replies

  • Hi AliW

    Isn't all the treatments different? I'm having chemo after my masectomy, where your the opposite.

    My kids are 9, 6, 3 and 20mths. My kids have really made me quite proud. They have never really gone out of their way to do many jobs around the house to help out. But when I have gone into hospital and in recovery they have been outstanding especially my 9 year old.

    My main concern with the kids was that they would feel worried and upset that I have an illness. I didn't want them to think they overheard anything negative about my health.  But I have countered this with telling absolutely all of our friends, family, the school. I usually find it quite difficult to share, but am trying to change so the kids feel ok. And so far they have done really well.

    I do agree after the initial shock it is a calmer pathway. I'm off to hosp tomorrow morning for my masectomy. A 4 day stay in hosp. and fingers crossed all goes well.

    Take care too.

    Heather

  • Hi SamzRusty

    I'm not sure when I start chemo. They said it is usually 4-6 weeks after the first surgery which was on 29 May. I have my oncology appoint in about a week, so hoping it all happens fast so I can leave all of this behind.

    I'm not sure I'm brave enough to cut or shave my head quite yet or even close to the date. Maybe I'll change. I've been thinking that I'll go straight to a wig with no changeover. But again not really sure how I'll feel till I get there.

    That's really positive to hear you were able to keep going with life throughout chemo. I've been really listening out for stories like that, thinking really positively I can do the same.

    Thanks

    Heather

  • Hi Heather, I'm a newbie here as well and just starting out - having chemo first then all going well mastectomy at the end of it.  Like you its all a shock but as the weeks pass head and heart do begin to comprehend what we are facing and we can start to breath a little easier on our new journey.  it must be SO hard having four kids while you face all this, on many levels.  Great to hear hubby has your back while you have the treatment.  How old are your kids??  The little one must be quite little?

    I've found the help and support and hints and tips on this forum amazingly helpful.  Together we can get through this.

    Ali x

  • When & where do you start chemo Heather? I shaved my head before I started chemo to a level 2, the little spikes I did have left, fell out on day 14. I bought 2 wigs, which I was able to claim back through BUPA. Winter is a shitty time to go from long hair to bald....I wore beanies to bed!

    It's all so much to take in, but you'll be OK. Chemo isn't easy, but it also isn't the nightmare you imagine it to be. The meds you get at hospital & to take @ home are fantastic. I ride a motorcycle & managed to ride all the way through treatment.

    Funny, I had no idea how tough I was until this happened....you'll be the same :)

    Sam xoxoxoxox

  • My goodness SamzRusty that would be a huge amount to deal with - all of those extra operations.

    I haven't written anything down yet, but maybe I should.

    I do want a breast reconstruction as soon as possible to feel normal again. But I'm pretty sure I have to do chemo first. I'm trying to sort out a wig for when chemo starts- I know it's early yet but I really don't think I could cope well with no hair yet. And today I started researching breast prosethis for an interim measure.

    Michelle R I have received a My Journey Kit from my McGrath Nurse - who is an absolutely wonderful person. I'm really not sure how well this could have all gone so far without her to explain so much to me.

  • I saw the no radiation as a positive too :)

    I was diagnosed this time last year with TN & then found out I was also BRCA1 positive. I went ahead & had a hysterectomy, oopherectomy, bilateral mastectomy & reconstruction.....Michelle is right, write EVERYTHING down. The My Journey kit has a great section in the back for keeping track of all your medical costs too. 

    Biggest tip I can share with you is stay away from Dr Google....he's really not as informed as we are about Triple Negative ;)

    Are you thinking about reconstruction as well? If so, you should check out  the 'Breast Reconstruction' group on here. It's a private group, but loaded with great infromation.

    Go Kick Arse Heather!.......Sam xoxoxoxo