I was DX one year ago when I had a lumpectomy, sample lymph node removal (which were all clear) and radiotherapy. My oncologist said that chemo would only make a 2-3% difference to my prognosis so decided not to give me it.
I have since been seen by a geneticist due to family history, although am still waiting for the results which take several months.
I am so so scared of a recurrence that I have discussed a double MX with my surgeons both here, and in the hospital where I had my rads as an inpatient. After six months of discussion, they have agreed to this, and I am having a double MX with immediate reconstruction in seven weeks time (24th August). My consultant has told me that I will be in hospital for between one and two weeks.
I need some advice please on what type of things I should take into hospital with me, and how ‘mobile’ or otherwise I am likely to be after surgery. The recon they are doing is a fairly new procedure using Permacol (a type of pigskin) and expander implants (as seemingly I don’t have enough fat and tissue on my tummy or my back to use!) I have a lovely Tamoxifen roll of fat on my tummy which I thought would have been perfect but they don’t agree lol!
My gorgeous little boy will turn two the week before my op (I spent his first birthday in hospital having rads) and I have been told that I MUST NOT lift him for at least three months.
The way I see it, it’s going to be a really tough few months, but I will hopefully have some peace of mind afterwards. I have been told that the risk of a recurrence will still be 10% after the double MX but I think I can handle those kind of odds!
Sorry for rambling on – those on here who have met me already know that I can talk once I get started!
So, keen for any tips for hospital, and sending love and hugs to everyone else out there struggling with this horrible disease.
Sorry to read your news. I had a double MX in July 2008 but did not go for reconstruction, but I should think your op will be roughly the same as mine seeing you are having implants. I had the double MX and lymph node clearance on the right side. After the op I had drains in both sides, it makes going to the loo wihtout getting tangled up a whole new ball game! I had already had a WLE in 2004 and had a drain then and I had a light weight housecoat type thing that matched my pjs with fairly large pockets each side then and was able to put the drain bag in the pocket so I took the same thing in with me this last time and was able to use both pockets. It sure beats wandering around with a bag in each hand. In Derriford the Primrose Ward has very pretty little cotton bags they put the drain bags in, it not only hides them a bit but also makes them easier to move around with. I had one drain out after 2 days but the drain in the side where they took out the lymph nodes was in for 5 days.
I had to get used to sleeping on my back as you can’t sleep in your side because of the drains. I used to plug myself into my MP3 player and spend the night with that playing or use the hospital radio earphones and listen to the radio all night it seemed to help me sleep. If you have a Nintendo DS or something similar that can be a real life saver, I don’t know what I would have done without mine. Gone stir crazy I reckon.
I hope I have given you some ideas, good luck and lots of love and hugs coming your way. I will be thinking about you.
Hi she, firstly, i 100% think you are doing the right thing. I was dx in jan this year, plus 1 lymph node involved. I had a single mastectomy, with expander implant, which will be changed for a permanent one after all my treatment is finished, and then 2 weeks later all nodes removed. I too have an extensive family history, and am awaiting gene test results. I too wanted a double mastectomy, because of history, but my surgeon said i was to get over this first, then decide what i wanted to do, although my mind is made up, i decided to wait.I am on 5 of 6 chemo cycles tomorrow. As regard the op, everything went well, i was out after 5 days. Regarding what to take in, button through nighties or pjs as you wont be able to lift your arms properly for a while. i found baby wipes useful for freshening up.The physio will visit you the day after the op, to get you moving, the sooner the better really. Although you wont feel like it, its important that you do the exercises, but dont push yourself too hard. I took lots of loose clothes to wear during the day. My op was early morning and took around 3 hrs, they got me out of bed, just to use the commode around teatime. Then the next day, i walked with a nurse to the bathroom. But after that i went alone and was fine. I kept up with the painkillers for a good few days regulary, then just took them as and when needed. But everyone is different.
Hello She
only had single mx and tips given sound spot on. I also made sure I had my make up as it affects my mood, to be able to put lippy and mascara on! music via ipod etc (it was a sony walkman in those days - with a tape!) and books are the things that saved my mind.
I too think this is a good decision. I would read up on it, learn what you can, and then think about it after you’ve enjoyed your little boy’s birthday - cos you really deserve to have that with him
good luck, mon xxx
I had a single mx and diep recon back in oct 09 and returned to work 10 weeks later so yes 12 weeks sounds realistic.
Good luck with your surgery and hope all goes well.
shenagh after a double Mx your risk of recurrence is reduced by 90%- 95%… so it will be a lot less than 10% which is the average risk of getting cancer in the first place… if your risk of recurrence was 50% which i dont think is the case unless you are a gene carrier then you would have a 5% risk of recurrence following PBM.
hope that makes sense.
as for your trip to hosp i will come and visit you and if you need anything brought in you can let me know… and ill be wanting check out your new boobies because ill be getting matching set about 6 months after you LOL.
Hiya, I had a double mx in Feb this year, I was in hospital for about 5 days I think and had drains on both sides which are a nightmare when you get out of bed and forget!
In terms of what to take, button down pj’s are good as you will have to keep undressing to have your dressings / drains etc checked. Oh and be prepared for being drawn on before surgery, so don’t do what I did and put on body lotion…the black marks smeared everywhere!
Hiya,
A friend of mine had a single mx in april this year - one thing she said was invaluable and recommended for me when I went in for my node clearance was … a belt !!(Our hosp keeps ya for 5-7 days for a node clearance). In our hospital we are given nice pretty flowery bags to carry drains in so we made belts with double “D” rings on to hang the bags off (worn under or over pj’s) - it was a life saver(I passed it on to one of the other ladies when I left so its prob still doing the rounds!), it also was used over the shower rail to hang bags off so it was easier to have a shower.
I also took in a “V” shaped pillow, it made it so much eaier to get comfy on a night.
Tracey xxxxxxx
oh yes and mints for after the anesthetic - when you are allowed them, really helps take the taste away
A very good friend went shopping for me when I needed button down pj’s and found very reasonabley priced ones in Tesco. A good cotton mix and they were about £6 or £7 - can’t quite remember. They were great for hospital as short sleeved as well.
My iPhone was my saviour in hosp when I couldn’t sleep. I had whole series of Gavin and Stacey to watch and books to read on it and my music of course. Long earphone cables help too. Good luck dx
oh my gosh how do u watch tv on iphones !!! ive had mine a whole month now and i could do with knowing that before i go in for my double whammy in ermmmmmm 13 days !!! She… I got my panti girdles from ebay they are hilarious you could get the whole county in them !!! xxxx
Hi smallstar OH put them all on for me . I will get him to write out the instructions when he gets home from work. The only thing I do know is that you need them on DVD first (legally). So I got lots of series like prison break and 24 that I had missed and are getting cheaper on eBay and amazon and had them put on. It was great. Dx
Oh and if you type iPhone catch up and log in you can watch all free view channels on the Internet. And of course anything on the iplayer. As long as there is an internet connection/ router. I could get a connection in hosp. Dx
