Hey and hope all are doing OK.
I have just returned from an appointment with my breast surgeon and need a little advice please.
I was dx last January 07 with Grade 3 ductal carcinoma at 28 years old. My mum was also dx 1 week after with exactly the same. I have since been for genetic testing but will have to wait for a good 5 months for results. I have a huge family history of breast, ovarian and uterine cancer so believe I will more than likely be carrying the Breast Cancer Gene.
Surgeon and I had a long chat about mastectomys and would I want one if this was the case. I’m 29 years old with a 10 year old daughter and feel that I am just too young to take any chances so feel i should have the op.
I would just like to know what happens really. How long is the op ? He mentioned he would leave a flap of skin and insert implants. Is this all done during the same op ? How long will I need off work ? How long am I likely to be in hospital ?
Also what happens if I don’t carry the gene. Could I still have the op ? I’m kind of wishing they would’ve removed them at the time of the lumpectomy as now I am constantly checking them and am paranoid the cancer is going to return.
Much advice needed please ladies,
BIG HUGS
Mandy xxx
Hi Mandy
I can answer the bit about if you do not carry the gene can you still have preventative surgery.
This is the situation I found myself in. When my mum was diagnosed with BC for the second time I started to look back into the family medical history to find lots of breast, ovarian and bowel cancers, plus lukemia. My mum (the only survivor) was tested for BRCA1 &2 but was negative. I was still offered surgery due to the high incidence.
I had my first mastectomy and reconstruction (back flap muscle with implant) in January. I am due to have the other side done next Wednesday. The op took about 6 hours, I was in hospital for 7 days and off work for 12 weeks. But I do have a quite physical job so could have gone back sooner possibly.
I have not regretted it once. I am 39…oops I lie I am 40 now! Cant get used to that.
Hope this helps a bit.
Jackie x
Hi Mandy and Jackie
I was dx with invasive ductal grade 3 last June - had chemo, then mast then rads. I too have been tested for gene and will get results next month. But I pretty much know, even if it appears I dont have gene I am going to have other boob removed. Have already spoken to ps about this and he would do 2nd mast and bil recon (would have to be ld recon with implant - as dont have enough on belly). It would be a big op but for me worth doing. I too have trouble getting used to the fact that I am now 40 Jackie - just turned it in April.
Its not a decision I have taken lightly but I know I couldnt go through the last year again and will do anything to stop it. Also I feel bilateral recon might look more even??
Anyway - good luck for next Wed Jackie and all the best to you Mandy whatever you decide.
Love
Fiona
x
Thanks Fiona.
I was 40 in April too!! 20th.
I wonder why I waited over a year for my genetic test result when I was offerred surgery, based on the high incidence, anyway. Doesn’t really matter now I suppose, at least I am half way there.
Will you have both recons done at the same time? My surgeon was not willing to do that because she said I would be in too much discomfort to have both sides of my back affected. With hindsight I think it would have been OK to do both together and would have meant less time off work. I have read threads on here that say it is ‘mild discomfort’ but I would say it is a bit more than that. I am very happy with the cosmetic result and the ‘discomfort’ is well worth the peace of mind and the knowledge I am helping to prolong my life.
I think you are right about bi-lat recon being more even and I am certainly looking forward to an equal pair again. Good luck for your results next month, let us know how you get on.
Jackie xx
Hi Mandy,
I was 41 when I was diagnosed with both lobular cancer and DCIS in July 06 and was advised to have a bilateral mastectomy, I was absolutely devastated at having to have both my breasts removed more so than being told I have breast cancer, anyway I asked for immediate recon but was refused as they weren’t sure if I would need chemo/rads or not. I was also advised to have the genetic test as both my mother and sister have had bc, I had the test and found to be negative but because of the high family history my 16 year old daughter is now in “the filing cabinet” to start to be screened when she is 30 as they think it is hereditory but at this stage they don’t know the link.
I had my bilateral recon done in May 07 after waiting what seemed forever as having the recon was my light at the end of a very long tunnel, I had the ld method, was in hosp for 7 days with four drains, on morphine drip and oxygen for first 12 hours then managed with strong painkillers, yes it is painful and very uncomfortable when you’re trying to sleep but to me well worth it.
I have recently had my nipples done and am now awaiting the tatoos, I am also going a size bigger early next year as I have a rippling effect on one side which my ps says going bigger should get rid of it and being as I am smaller busted than before the cancer I am more than happy to go bigger
Hi Jackie
I will have them done at same time - ps is willing to do this - I know its gonna be awkward and painful but I would rather get it all done at once. I live on my own with my 15 year old daughter so will have to get her helping out more. It will be early next year till I get it done - the ps said he would do is slightly sooner but would prefer to wait the year after rads so I am going to be sensible and wait. It was good to read about both yours and Mandy recon as they sound like you are both more than happy with them.
By the way - I was 40 on 25th. Did you do anything special. I went to London with my 2 best mates for a couple of nights - we saw dirty dancing on the first night and had a lovely meal with champers on the 2nd.
Love and hugs to you both
Fiona
x
Hi Mandy,
I’m 28, I had a mastectomy in March this year and I’m completely happy with the decision I made. The surgeon said I could get away with a lumpectomy, but if I was his wife, mother, daughter…he would give me a mastectomy. They left all my skin and inserted an expander, which will be replaced with an implant later this year. I have the most fantastic boob, in a bra it looks like a boob job…honestly you would never know.
Hope this helps…
Lots of love
Kate
xx
Hi Mandy - I was originally diagnosed at 34 and had lumpectomy, chemo, rads and ovaries removed (Iknow you have posted another one about ovaries) and was ok for a few years then last summer at 38 had DCIS in the same breast so had one mastectomy done then and had the other one done preventatively in March this year.I had implants with the back muscle moved round both times.
Like you I kept thinking why didn’t I just have the mastectomy done originally then it wouldn’t have come back but because I had radiotherapy my surgeon said he wouldn’t have been able to do the reconstruction straight away first time around I would have had to wait a while.
The good news is they both look really good in a bra - and once my nipples have been done will look great out of one! My friends are all jealous of my cleavage and I don’t need to wear a bra if I don’t want to in strappy tops - they just stay where they are!! Mentally I also feel such a relief now they are gone - I don’t feel like I have anything lurking in my body anymore. For me it was def the right decision - I don’t know about the gene as no one else in my family has it so I haven’t been tested.
As for ovaries not so sure on that one if I regret it or not if I am honest? They came out 3 years ago and my sex drive has plummetted and it didn’t actually prevent my DCIS - but I don’t know. They are gone now and I love not having periods!!
I really feel for you as at your age you shouldn’t even have to think about theses decisions and it is really isolating and scary - Take your time to make the right decision for you. You can have Zoladx to shut down the ovaries chemically and I think that is reversable if you are not sure about having them removed.
I used to come on this site every day when going through treatment and for a while after but now I feel so less worried about it coming back I just log on now and then to see how people are doing. I do feel the double mastectomy has helped me move on.
Take care and lots of love
Sarahx x x
Hi everyone
Fiona - my 40th was a bit of an anti-climax. My OH took me out for a meal and that was about it really. I think you are right about having both sides done together, it has really dragged on for me and I cant help thinking I should be recovered from both by now.
Sarah - Please can I ask if you are taking HRT? I am finding the whole subject a bit of a minefield (and I’m a nurse). I love the sound of no periods!!!
Jackie x
Hi Jackie
I havent had a period for about 35 wks now - stopped during chemo and havent restarted!!
I too am a nurse - a paeds one - are you general?
Take care
Fiona
xxx
Hi Fiona
I am gerneral trained and now work in forensics for the Police. I’ve been in post for 6 years, so must like it. How long have you taken off work so far? I was off 12 weeks after my mast/recon. You will obviously have more time off in the future, has your employer been suportive? The Police are quite good except my pay may be halved if I go over 6 months in any 12 month period. I am having my ovaries out next so that is a possibility. I do not live with my OH and have 2 kids so bit worried about the bills. I was planning to wait a while before having oopherectomy but an abnormality was found on my last USS so I would rather get it done sooner than later.
Anyway, have a nice weekend. I am going to do all the last minute things before going into hospital Tuesday afternoon (bed allowing).
Jackie x
Hi Jackie - My onc warned me about how many hot flushes I was going to have and all these other side effects but to be honest (and I think I am very lucky on this bit!) I haven’t had any. My main side effects were a few bad migraines and I do tend to put weight on around my stomach - but that could be due to over eating and drinking!! I can’t have HRT as my first cancer was hormone positive so the main idea is get rid of as many hormones as poss. As I went through tthe menopause at 35 though I have to take calcium supplements and a bone building drug once a week.
Good luck for Tuesday -
Sarah x x x
Hi Jackie
Wow - forensics for the police sounds really interesting.
I too live on my own and have 1 child so money is a worry. I was off sick from July last year and went back full time after rehab programme in beg April - I did manage to go back non clinical short shifts half way thro chemo so this gave me longer sick time - they were really supportive - which I really would expect after 20 years of service - I am not one to take lots of sick time so I would have been disappointed if they did not support me. I will hopefully stay well rest of this year and get other mast and bil recon beg of next year. Depending on genetics whether I will get oopherectomy or not - or i may just consider that preventativly too - but hopefully get recon first - altho shame they cant do every thing together.
Are you excited for Tuesday? Who looks after kids when y ou are in?
Speak soon
Love
Fiona
xx
Hi Sarah
Thanks for that info, I really must do some reading up on the subject. I believe I am going to be able to have HRT as I have not had BC. I too suffer migraines so that is a bit of a concern. I am pleased to hear you have had minimal side effects though.
Jackie xx