Breast Cancer Now Forum

Thanks norberte. It's good to get a response anyway, as you say hopefully someone else will be along soon ... fantan ... View more

Hi White Daisy Just to let you know what I decided when I was first diagnosed. I was told initially from a needle biopsy that I had invasive ductal carcinoma. I had a WLE first of all and reconstruction wasn't mentioned. Unfortunately when I got my results I also had extensive high grade DCIS and the margins weren't clear, so I had to have a mx. I just wanted to deal with the cancer and any treatment so didn't consider an immediate recon. I could have had one if I'd wanted but they did point out the problems associated with implants and rads. There is so much to deal with initially I don't think I personally would have coped. But everyone is different. I took 2 and 1/2 years to make the decision to have a recon and that gave me plenty of time to reseach which one to have and the surgeon. I ended up having a diep flap as I didn't like the thought of an implant. I now feel more balanced, find shopping for clothes easier and have less of a visual reminder of what I've been through. But there are loads of women out there who are really happy with their bodies post mx. The recon isn't a boob - there is no sensation there and I have a oval scar. But I'm glad I had it done. I know that the decisions I made were right for me at the time. Hopefully someone who did have an immediate recon will respond and give you their experiences to help you make that decision. Good luck fantan ... View more

Hi Liverbird I was on Tamoxifen for 5 years and after tests to see if I was post menopausal, changed to Letrazole a year ago. My onc went through the pros and cons and suggested 3 years on it. He used a program that gives a projected outcome given the factors of your particular cancer (size, spread, er+ etc). I thought that a 3% better chance was worth taking as I was used to being on medication. A year down the line I'm not so sure now. You can never know how an individual is going to react to medication and I have found I've recently had problems with my digestive system - indigestion, constipation, trapped wind pain etc. The side effects listed cover almost everything to do with digestion. This combined with the build up of calcium in my body, I think is the cause. I was also reading about prolonged use of indigestion tablets (contain calcium carbonate). Apparently 'over time they (Tums, Rennies) cause acid rebound, a condition in which the excess calcium actually stimulates increased acid secretion'. As the dose we take is quite high it's hardly surprising we've had problems. I get joint pain and stiffnes but feel this is managable. I've also put a bit more weight on but my body shape has changed too so this may just be the menopause (I'm nearly 54). I'm due to see my GP next week and will see what he suggests. May have to see the onc again soon too. Perhaps you could ask your onc's secretary to get her to explain again your projected prognosis maybe using the same program mine did - I think it's on the web but for consultants only. It's so hard when you have to make decisions youself. My onc would have given me chemo if I'd wanted but I decided just to go the homone therapy route (5 yrs tamox, 2 yrs zoladex). I'm lucky that my husband is very supportive and the breast consultant who did the ops is also happy to advise, so I've had a lot of help making my decisions. The decisions I've made have been the right ones for me at those moments in my life, but that still doesn't stop those little doubts every time I get a pain or niggle. Having had cancer is something that never completely goes away, but the further away from diagnosis I get, the easier it is to cope with. Good luck R with your decision and I hope there are many more replies from the wonderful women on this site. fantan ... View more

Hi nanarose I had a delayed diep recon in oct 2007 aged 50, (dx jan 2005). I went for the diep as I didn't like the idea of an implant. I am slim so didn't have much excess tummy fat. The new boob is smaller as a result and the scarring on my tummy quite extensive. This is because the surgeon tried to get as much fat as possible and when he put me back together it was very tight. It took some time healing as the skin didn't knit. The op was long - 10 hours and I was in hospital for a week. The recovery was about 3 - 4 months and I needed all that time. Having said all that - I don't want to put you off. It was so worth it. Even with the size difference of about 1 cup shopping is now much easier. It looks normal in a padded bra and I can wear lower cut tops with out worrying about a prosthesis showing. I feel balanced again and even though it looks different I don't feel I've got that constant visual reminder that my mastectomy scar gave me, of what I've been through. Like you I had reservations about the op and recovery. As long as you've got the support of friends and family during the recovery time I'd say go for it. I feel so much better about myself since having it done. Good luck with your decision fantan x ... View more

Dear All Thank you so much for your replies. Went away for the weekend so have only just logged on. As it turned out the bleeding continued over the weekend and became heavier so I think I've had a period, but am going to see the onc next week so will have the opportunity to have a chat about it. Thanks again fantan ... View more

Great idea for a category. I'm 5 years post dx. Keep bumping this up! fantan ... View more

Hi Nicki When I started on tamoxifen 5 years ago I asked my onc about taking supplements for the flushes. He said sage was ok but not to take red clover or black cohosh. It's hard to say whether the sage worked or not because after 3 months on tamoxifen I started zoladex injections which made me truely menopausal and the hot flushes got far worse. I have to say they did get better over time and after the zoladex finished (2 years) they were a lot better. They have got a bit worse over the last year, but I think I may have gone through the menopause as I haven't had a period for over a year now. In fact I have a blood test tomorrow to check my hormone levels and I see the onc after that to discuss further treatment (or not). I got myself a chillow which really helped at night. Hope this helps fantan ... View more

Hi all It seems a long time ago now (5 years) and I don't come on here very often - just to see if I can help, but I remember the seroma only too well! I had it in my armpit following WLE & axillary node clearance. It felt like a ball and was extremely uncomfortable. I had it drained 3x a week for 5 weeks. Each week was a little less and I didn't get an infection. I then had to have a mastectomy as the margins weren't clear and I got seroma under the scar (it looked like I was growing a new boob!) As it wasn't bothering me - it just used to slosh a bit - they didn't drain it at all and it was eventually reabsorbed by the body (can't remember how long this took though). Hope this helps fantan ... View more

Hi everyone Interesting reading! Looked up the Ladycare magnet as at 52 the hot flushes seem to be getting worse. (Dx 5 years ago, still taking tamoxifen and had 2 years zoladex which finished Jul 07) Think I may be truely menopausal now. Was interested to read that they don't know how the magnet works but think that it boosts levels of oestrogen and progesterone. As I was highly er+ I won't be investing. Take care fantan ... View more

Hi Julie59 I had a diep recon in Oct 07. I didn't have any physio whist I was in hospital, but I had my 1st appt for physio 2 weeks after the op. He assessed how much movement I had and then gave me exercises. I think I then had 2 follow up appts 2 or 3 weeks apart. It would be useful and in some cases crucial to have it. It also depends where the surgeon attached the new blood supply. Mine did it in the centre of my chest but a friend's surgeon did it in the armpit. This had a huge effect on her movement and she ended up with a frozen shoulder. Perhaps you could ask at your 1st check up (mine was a week after the op) or speak to the breast care nurse. I didn't have back ache. When coughing or sneezing I used to hold my tummy. The support girdle helped too. I did manage to pull the stitches in my tummy closing the car door and was left with intermittent sharp pains for 6 weeks after so please be really careful. I slept with a pillow under my knees for a couple of weeks as my tummy was particularly tight! (Not enough there to start with) My new boob is a cup size smaller but I am soooo pleased I've had it done. Good luck with the recovery and take thing easy. fantan ... View more

Hi Maz I have yearly mammograms and they only do my left breast as I had a mx 5 years ago. Technically the Doc is right in that when you had the mx they took all the breast tissue away. If you look at the pathology report on what they found it should say if the margins were clear. If they weren't and they weren't sure that they'd taken everything away, then I guess you'd have had more surgery. When I have my check ups the consultant checks the area around the edge of my reconstruction and has a good poke about in my armpit. You are not being paranoid though. We all get anxious especially at check up time. I was really bad from before xmas til I had the check up this Jan and I was dx 5 years ago. Perhaps you could ask someone to do a physical check around the recon to put your mind at rest. take care fantan ... View more

Hi janetn I was on zoladex for 2 years and have been taking tamoxifen since dx 2005. I stopped the zoladex in June 2007. I had 2 horrendous periods the first of which was Aug 2008, 14 mths later, and the 2nd in Jan 2009, 5 mths after that. I then had a much lighter more normal period in Apr 2009. I haven't had anything since. I'm still on tamoxifen which can stop periods, and I'm now 52 so could be menopausal (I certainly feel it sometimes!) Hope this helps. fantan ... View more

I have 2 ( 1 normal and 1 stick on) which I no longer use as I've had a reconstruction. Unfortunately I was 34C so they won't be big enough for your friend's friend. But I would happily donate them to be used in other countries if anyone can tell me where? fantan ... View more

Hi Jacquie I use a mooncup and they do hold more than a super plus tampon. It takes a bit of getting used to as there's a knack to getting it in and you have to make sure the suction's there or it'll leak. You don't have to mind 'fiddling about' down there! My periods stopped when I was on zoladex 2 years ago and I'm still taking tamoxifen. I thought they'd gone but had 2 horrendous ones earlier this year. Whilst the mooncup is messy I managed the heaviest days by emptying it every 1-2 hours. I also wore a panty liner as there's usually a bit of residue. Over night I'd wear a pad aswell which helped with that 'gush'! I've seen it advertised as being sold at bigger Boots and I'm sure they have a website. Good luck fantan ... View more

Hi Maude I'm not sure if they make one for your size, but have you considered a stick on prosthesis. I used one from 6 months post mx until I had my reconstruction at 2 and 1/2 years post mx. Amoena do them. I preferred the stick on as it felt more a part of me and you don't get that falling away when you bend down. It uses silicone bobbles to stick and as long as your skin and the prosthesis are clean and dry it stays put. I even swam regularly wearing it. It may be that because of your size it won't be a good option for you and it'll be too heavy and pull on the skin. (I'm 34C.) On underwires, I wear both now that I've had the reconstruction. Still using my mx bras! Some Amoena bras have soft underwiring which is more flexible and therefore more comfortable. Write down what you need to ask the BCN (even now 4 and 3/4 years on) I still go armed with questions to my check ups. Take care fantan ... View more

Hi Helen So glad you've been able to make a decision. I think if the benefits for me were an extra 7% I'd have gone that route too. As it was the benefits for me in having tamox and chemo were only 2-3% so I decided not to have it. What I did do though was have 2 years of Zoladex (I too was strongly ER+). A report, in the Lancet I think, came out with early results indicating that for women with my prognosis, the combination of tamoxifen and zoladex gave the same benefits as chemo and tamoxifen. So it was the right decision for me. With regards to the wig. See if you can find a hairdresser who's involved with 'my new hair'. They will have been trained by Trevor Sorbie to cut wigs to suit. Apparently wigs have about 40% too much hair. Your own hairdresser may be able to style it for you. Good luck with everything and I hope the sinuses clear up soon. fantan xx ... View more

Hi all I had a mx in 2005 and could have pushed for immediate recon but decided to wait. I didn't know if I needed chemo or rads and wanted to deal with the cancer and think about recon later. I was lucky that I didn't need chemo or rads and knowing how huge the op for recon is I took over 2 years to make the decision. They were the right decisions at the right times for me. I'm delighted with the outcome as I now feel more balanced and don't have that constant visual reminder I've had BC. As the others have said you have to do what is right for you and there are loads of comments here that will help. Good luck fantan ... View more

Hi all I use sylk as a lubricant and you can now get it on prescription, so it's free if you've got an exemption cert (as a cancer patient you are entitled). fantan xx ... View more