BRCA1, tumour found - 30 years old

[ruth1]

sorry - missed the bit about sentinel node biopsy - mine was done during the mastectomy. I stayed in hospital for only 2 days after surgery but most people stay longer. I was sent to the colorectal ward and my Drs were afraid of infection so it was decided I could go home but I needed a full on carer as I had 4 drains and needed assistance with everything for a few weeks. You will need someone to help.

[ruth1]

Steph - pics of mastectomies do look awful - surgeons work as quick as possible so the usual thing is incisions straight across centre of breast to remove the tissue quickly and efficiently - but - if you have a plastic surgeon do the surgery with a Diep reconstruction n in place then it will be done under the breast and up to the nipple - ask for nipple sparing as well - I kept mine without a problem. My reasons for doing double mastectomy were:-

age - didn't want to have contining mammograms etc,

rads - didn't have to have rads post mastectomy but with lumpectomy its part of that treatment.

family history - Mum died at 52 of metastatic breast cancer

I was told lumpectomy would be fine but post surgical pathology found further cancer not seen on any pre surgical scans. Really glad I opted for the mastectomy.

Hair loss - doesnt matter that in your mind you know vanity versus cancer is a no brainer. Losing your hair is like lsoing part of your identity - surgery means loss of a major part of being female then your hair goes so its extremely hard. I cried buckets when mine went. The big positive is it all comes back and quite fast too - I finished chemo in Nov 2012 and was sitting in the hairdressers having regrowth cut and shaped the next Feb. I lost every hair I owned but it all came back.

[StephO]

Hi Judy,

Thanks for your reply. I really appreciate you sharing your experience. I did see a woman with a wig when I was at the breast clinic.
I hope I don’t sound bad saying what I said. I didn’t want it to come across that way as I know there is more important things... just a few thoughts on what I’m thinking and am worried about.
I really don’t want radiotherapy if I’m having a double mastectomy so I might discuss my feelings toward it and see what they say.

Did you all have a sentinel node biopsy? Is it just a day surgery or do you have to stay overnight? Is it painful?

[JudyB]

Steph, often if you have a mastectomy you won't need radiotherapy but that depends on the size of the tumour and where it is. My tumour was 5cm and close to the chest wall so my surgeon thought it best to have radiotherapy to minimise the odds of it returning to the chest wall. Once you have radiotherapy you can't have it again in the same place so many doctors would rather not use radiotherapy and keep it as an option for later. If you need to have radiotherapy there is a good chance that a TRAM flap or a DIEP reconstruction will be your only choice. Some people have expanders put in but I don't have any experience with them so can't help you there. Either way I can't see why you won't be able to wear a bikini again eventually. I had a DIEP and have a nice cleavage and the tummy scar is very low, below the bikini line. I do have some red splotchy rash type markings from radiotherapy but it doesn't worry me and I believe that there is a way to get rid of it or cover it up if I really wanted to.

One of my biggest fears about a mastectomy was how it would look, it freaked me out. I was pleasantly surprised with how it did look. Of course it was nothing like having breasts and wasn't nice but it wasn't gruesome at all, my surgeon did a great job.

I have never been a hair person so didn't worry too much about loss of hair (first time around anyway.) There are some absolutely terrific wigs out there and no one would pick them. Next time you go to a busy shopping centre look around you at the people. Consider the amount of people going through chemo each day and you will realise that there are probably people there wearing wigs. I used to wig watch and yes I did spot a few eventually! I used to do this in the oncologist's offices where you knew that a lot of the people were undergoing chemo and realised that there were quite a few wig wearers and I would never have picked it up if I hadn't known it was likely. Apart from that buy some scarves and practice different styles, they can actually look quite becoming. Check Youtube for tutorials on how to draw on eyebrows, there are some good ones there. I found that the eyebrows were the last hair to go and they returned very quickly. Anyway with a bit of luck you won't need to have chemo.

Judy

[StephO]

I really appreciate the replies and shared stories.

I’m a nurse working in aged care. So heavy work load both physically and mentally but I do love my job.

I have a few questions and things on my mind. Firstly... do you need to have radiotherapy if you’re having a double mastectomy? My mum didn’t have radiotherapy, just chemo with her double mastectomy.
My friend said something about the effects of radiotherapy may not be that useful and can be quite harmful to the skin??

Regarding the double mastectomy... I feel quite upset about this. Pictures I’ve seen look horrid. I have quite nice breasts, they are not saggy. I feel a bit upset and losing them for the fact that they won’t ever look as good. I’m young and wear bikini’s on the beach (although I’m overweight I probably shouldn’t be lol). I have size 14D breasts. I will be taking my nipple off and wanting a fake nipple. I know this sounds terrible because the most important thing is getting rid of cancer and preventing it returning but I don’t want to look like someone ran over my chest with a lawn mower.

There is also the implants or the one from your stomach? Opinions on these would be great...

How did everyone feel when they lost their hair with chemo? Another concern of mine obviously being a young woman, not so much about losing the hair on my head but more so my eyebrows.

Did anyone have breast pain when they had breast cancer?

Sometimes I feel like this is a bad dream that I’ll hopefully wake up from soon...

[JudyB]

Hi Steph

Sorry to hear that it is chemo but as you said, you were expecting that so no big shock although it will still take some getting used to. I think the general rule is that if there is lymph node involvement they like you to go ahead with chemo, otherwise perhaps just radiotherapy or maybe even just hormone treatment depending on the type of cancer.

My 'child' was in his 20's when I got cancer so I didn't really have anyone depending on me to look after them but I did work through all my treatment and I had both chemo and radiotherapy. I did need to take anything up to a week off after each chemo but if I was desperate I probably could have got away with four days for the first three doses and then a bit longer for the second three as it was a different type of chemo. I worked in an office and it will depend a lot on what type of work you do and of course on how the treatment affects you, it can be different for everyone. The radiotherapy I worked through, just going in to work a bit later each day.... I did need a week off towards the end but once again that depends on the affects it has on you.

If you go through the public system it shouldn't cost you anything so don't worry too much about money, just do what you can and look after yourself.

[ruth1]

great that your Mum can help out. One step at a time - Ive had a dble mastectomy and it wasn't quite as bad as I thought it would be but it certainly took a few weeks to get over it. If you have rads that will make you very tired so you will need some help through that and wait and see whats next.

[Janette]

Hi Steph,
I'm sorry to hear that it is bc. I hope it is caught very early and curable.

[StephO]

Hi Ruth

Yeah I was expecting it to be breast cancer.
I have to have a sentinel node biopsy to see if it’s fine to my lymph node. That will happen under general anaesthetic in the next 2 weeks or so.
I will be having a double mastectomy with reconstruction.
The doctor mentioned radiotherapy. And I think dele ding on whether it has spread on whether chemo or not. I’m not sure.

My mum will be helping with my son.
Financially, my parents aren’t well off and struggle but I am hoping to still work when I can. I can take sick leave when I need to.

Xx

[ruth1]

Steph I am soooo sorry - that's absolutely shite!!! Ok what is next - what treatment I being suggested to you? Do you have some support around you especially to help with your child and also finances?

[StephO]

Hi ladies.

I found out today that it is breast cancer; invasive ductal carcinoma.

Judy: yes I realised what you meant haha.

Xx

[JudyB]

Hi Steph, I just realised I typed that I hope your tumour is found to be malignant. I am sure you realised I meant NOT malignant.

Judy

[StephO]

Thanks Ladies.
I find out on Thursday so I will let you know.

47 is still very young to get breast cancer too.

It’s great to have a forum with other people in similar situations to understand how you are feeling.
I’m very appreciative of the time and replies.

Steph

[JudyB]

Hi Steph, I'm sorry to hear that you have found a tumour and hope that it is found to be malignant. I was 47 when I was diagnosed with breast cancer, at the time I felt quite old but looking back it seems young to type 47. We do have a few younger members, I think the youngest has been Mel who doesn't come here very often any more. She was 29 and has been through all her treatment and moved on to have a child who has just turned 2. I think from memory her forum name is Dancer Mel. I don't think she has the BRCA1 gene though.

Whilst 30 is very young for breast cancer and having the gene must be like a sentence over your head. Good luck with your tests and let us know how you go.

Judy

[Janette]

Hi Steph,
Welcome to the forum. I'm so sorry to hear what you're going through. The BRCA genes are cruel, but good to know to be able to take action. I hope the outcome with the lump is best possible. Please let us know.