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Hi Debbie

I had what was called a subcutaneous mastectomy, axilla clearance and insertion of tissue expander! He said at the time that if I needed radio it would be fine with the tissue expander (at the time we didn't know the status of my lymph nodes).

 I had never heard of it and asked if it was new and he said he had been doing it for 10 years.  He was not happy with me having a reconstruction at the time of the surgery as the recovery was longer and the risk of infection was higher thereby delaying the start of chemotherapy (something he didn't think we should do). I was happy with a radical mastectomy as I just wanted the cancer out but he felt that the benefits of the skin expander outweighed any potential negatives.  I did ask after how it was done and what if they hadn't got everything and he said that during the surgery had things looked worse (like the cancer leading up into the skin or in the blood vessels) they would have changed their strategy. The pathology checks that everything is out with a clear margin anyway.  

Essentially at the moment, 2 1/2 weeks post op I look like I have a boob - though there is not an ounce of breast tissue in there.  I have no nipple and the expander is only half full.  The expander is inserted under my chest muscle - it is uncomfortable but getting better every day.  This week I imagine I will have a fill up!  there is a lot of saggy skin puckering around where my nipple used to be.  My surgeon said some women are happy with the expander (It's basically a silicon and saline implant) and never have a tissue reconstruction - but when I decide much further down the track on reconstruction I have my own skin to work with for the reconstruction and my scar is very small - about 5cm across where my nipple was.  I am happy with this and the options that it leaves me.  I actually have no idea why it is not more common but I am sure that there are reasons.  My cancer was a grade 3 (aggressive) but the largest tumor was 2.2 and there was no sign of it leading up to the skin.

I don't think that a plastic surgeon was involved in the surgery (I haven't got a bill for one! lol - there was an assistant surgeon).  I am so happy with my surgeon, he has not only considered eradicating the disease but how I will feel about my body when I have this disease beaten.  I will see a plastic surgeon further down the track regarding reconstruction but for now, the outside world wouldn't know I've had a mastectomy.  Today I wore a t-shirt and while I'm lopsided I felt no need to top up with the prosthesis and come Wednesday I imagine I will be more even when the expander gets filled up a little more.  I think one of the main downsides is how tight you feel in your chest while everything is stretching - I won't lie and say its a walk in the park but it is not too hard to endure.  We did laugh about how "pert" that boobie will be while my other one has a natural "droop" - again something that can be dealt with at reconstruction time.  

They did tell me how the surgery was done if you want to know - let me know - perhaps not for everyone - I just wanted to be sure they got everything.

It is so hard making these decisions - ask questions and get your answers it's your body afterall!

Good Luck,

Amanda 

HI Debbie, Me again. My story is my lumps totalled over 3cm+ and I chose to have mastectomy and axillary node clearance. The surgeon removed 17 nodes and only 2 had cancer cells. I had heard alot of women only having lumpectomys a and sential node dye only to have to go back a week later and have mastectomy and more nodes taken. Also I didnt want radiation as i would have had to go to brisbane for 6 weeks and i refused. It all depends the way I looked at it was, i have no need for my breast anymore, i saw no reason for two lots of surgery if not necessary, and many women having lumpectomy's got secondaries cancers down the track and had to have mastectomy's anyway. But it is your decision and yours alone. Getting others stories helps i think. But i just wanted the whole breast gone with the cancers asap. I dont want reconstruction. I want the other breast removed if possible so I'm more balanced. Happy to have no boobs or bras.

I hop this was a help, you may have already made your decision.

Chrissy D :) xoxox

Hi Debbie,

You need to talk it over with your surgeon well  beforehand.Not all surgeons do it- usually team up with a plastic surgeon.Some surgeons prefer you to wait incase you need radiation as well or depending on cancer stage.Try and see or talk to him on Monday -you need all the facts.

                               Tonya xx

 I am having my breast off on Wednesday , and have just been reading some stories regarding tissue expander which is put in at the time of the operation for later reconstruction.Is this done by the surgeon without being asked or do you have to request it.?. I did not know about it till today.

I found my lump in my left breast last October & was given the same choice as you. It was a tough couple of days while I made this decision. I was 47 and found that I wasn't ready to have the full breast off. Late November I had surgery & a 2cm lump was removed with extra margin to be tested. The surgeon removed 2 sentinal nodes & 7 lymph glands for testing. The lump was Grade 2 cancer & the lymph nodes came back clear. After testing of the lump, I was told it was HER2+ & that I would need chemotherapy, herceptin, radiotherapy & hormontherapy. I have just had round 4 of chemo & am doing pretty well. If I had the choice again, I don't know if I would have made the same decision. The surgeon has done a fantastic job of the surgery & it's healing well & is very similar size & shape to my other breast. So that's not the problem, it's the wondering if it's going to come back in that same breast & what will be the side affects of all the treatments further down the track? 

It's such a tough decision to make, so take your time.

Wendyxoxo

Hi Debbie,

These are awful decisions to make -collect all the info and personal stories but ultimately go with what sits right for you.I had lumpectomy,full node clearance and radiation in 2003 at the age of 47.I was presented with the same choices and at the time I wasn't ready to lose a breast.However,last year cancer came back in the same breast,same spot.I was in the unlucky 8%who get cancer back despite radiation.I had no choice this time but to have a mastectomy followed by chemo.I accepted losing the breast this time and I don't know if that's my age(55)or what.After radiation my breast was never the same- always a discomfort and alot smaller than the other. But at least it filled the bra and even had abit of cleavage.It was just for show .With a mastectomy,it's harder to look down and see nothing where your boob used to be.You can't wear any low necklines but the prothesis is really good.I'm reluctant to have a reconstruction at the moment cos I can't stand another op.(4 in last 3yrs)and I am paranoid cancer might come back along the scarline.So am watching it.Down the track I may change my mind I probably don't have much elasticity in my skin because of the radiation.

So you see,either way has it's pitfalls and advantages.I would say this though- chemo was by far the worst treatment.If I could have avoided that then I may have had a mastectomy 7yrs ago.But you just can't predict ahead.Good luck with your decision.

                        Tonya xx

Hi Debbie,

These are awful decisions to make -collect all the info and personal stories but ultimately go with what sits right for you.I had lumpectomy,full node clearance and radiation in 2003 at the age of 47.I was presented with the same choices and at the time I wasn't ready to lose a breast.However,last year cancer came back in the same breast,same spot.I was in the unlucky 8%who get cancer back despite radiation.I had no choice this time but to have a mastectomy followed by chemo.I accepted losing the breast this time and I don't know if that's my age(55)or what.After radiation my breast was never the same- always a discomfort and alot smaller than the other. But at least it filled the bra and even had abit of cleavage.It was just for show .With a mastectomy,it's harder to look down and see nothing where your boob used to be.You can't wear any low necklines but the prothesis is really good.I'm reluctant to have a reconstruction at the moment cos I can't stand another op.(4 in last 3yrs)and I am paranoid cancer might come back along the scarline.So am watching it.Down the track I may change my mind I probably don't have much elasticity in my skin because of the radiation.

So you see,either way has it's pitfalls and advantages.I would say this though- chemo was by far the worst treatment.If I could have avoided that then I may have had a mastectomy 7yrs ago.But you just can't predict ahead.Good luck with your decision.

                        Tonya xx

Well my day finally arrived , met my surgeon yesterday. After being a basket case all week , I was so suprised that I was so strong and had this inner strength  to deal with it.

Well so far my results are looking better. Not  2  lumps but 1, it is bigger 3cm - 4cm at this stage and my  Dr said he is 85% sure not in my lymph gland, but will know more once he has done the operation. Now I have 2 choices , this is were I would like some feed back. 

(1) Have the breast off and all lymph gland and nodes removed.

(2) Have lump and margin around it removed, then tested for cancer. Dye put into lymph area and see what needs to be removed.

Anyone that has had to make this decision I really would like your input.

My gut feeling is to have my breast off,the gland and nodes removed. The big day is next Wednesday.

Thanks once again ladies for all your support .  

Debbie. xxxx

 Thanks only have to travel half hr , if that live in Newcastle  N.S.W.  Will let you know what happens with the surgeon .  Debbie

hi Debbie, just wanted to welcome you to the group, nobody wants to be a member of, but which we are so lucky to have, all the ladies on here have been through the journey, as a patient or carer, and we have ladies who have just been diagnosed like yourself, through to ladies who have been clear for several years, so from this we have a wealth of information and support, so we all know how scary it is when you are first diagnosed (my 1st question was :am i going to die, and my surgeon replied, this is a like threatning disease, but it's not necessary a life sentence, and although i was worried sick, i clung to his statement, once you see the specialist and get a plan happening, you start to feel a bit more in control, i did read one of the ladies telling your about the free my journey kit which can be ordered from this site, i know you are probably inundated with information, but this pack, has been done with the help of people who have gone through bc, and also has useful information for you family and friends, in a language we can understand, so please make sure you order it. Also if possible, always have someone with you to ALL appointments, as i felt while i was sitting in the hospital, i thought i knew what was being said, but on leaving there, i couldnt remember a thing, so always good to have an extra pair of ears with you. We will all be thinking of you, feel free to add me to your contacts list, and stay in touch.... Take Care Moira X