Breast Cancer Now Forum

I was diagnosed with DCIS in left breast, picked up on first mammogram at 50, almost 6 years ago, like you it was too widespread to do other than mastectomy and personally I couldn’t have lived with the uncertainty of knowing it was inside me, but I know everyone views it differently. I chose to have mastectomy with immediate reconstruction using mesh  and implant so all done in one operation and have been pleased with the results. However my histology report showed there was a small 3mm invasive tumour as well as the DCIS so I had no regrets on going ahead with the operation.  Good luck with whatever you decide  Nic ... View more

Hi JJ, sorry to hear of your recent diagnosis. I remember the difficulty of making a decision about reconstruction. I had DCIS in two places in the same breast and needed a mastectomy. I decided to have the reconstruction using an implant supported by an acellular mesh attached to the chest wall and the operation was done all in one go. The recovery was about 8.5 weeks before going back to work on a phased return (as primary teacher) and I have to say I was very pleased with the result although I was 50 and therefore I do have one droopy and one non droopy boob! It did feel quite alien for about the first year if not a bit more but now (over 5 years on) I am not aware of it at all. Obviously it is completely numb but in underwear and even in a bikini(if I had the stomach for that) it looks absolutely fine. I was told the implant should last in excess of ten years. Like you I felt I didn’t want to risk another wound site.  Good luck with your decision, if you have any other questions about this op, just ask. Nicola ... View more

I also had problems with womb thickening as a result of tamoxifen, investigations were done including a hysteroscopy where they put a camera into the womb, and they removed some polyps, but though this happened twice the results were always clear, so try not to panic, I’m sure they will check it out and reassure you. There are quite a few discussions about this on the forum elsewhere as I took part in a discussion with others at the time.  Hope you get some answers (good ones) soon! Best wishes, Nicola ... View more

Thanks for your message Helena. I’m pleased to report that things have really improved over the last week, I’m now about 3.5 weeks post op and have just about kicked the painkillers completely, apart from as you say occasionally first thing in the morning.  Managing to walk up to about 30mins as well and doing little jobs around the house one plate at a time! No housework though! Paid my student son to do that at the weekend! I’m really glad I had it done too. Not going back to work for another 3  weeks yet and then I might do just mornings for the first week if I can. Menopause doesn’t seem to have hit too hard yet so fingers crossed on that one. Glad you have recovered so well and are getting back to normal.  Thanks for your support, Nicola x ... View more

Hi Pam, that all sounds a nightmare! I also had problems with a Mireya coil several years ago as mine had come out without me realizing before the six week check! You don’t say how old you are, is there any likelihood you would want more children? Is there no possibility of removing the coil using the equipment they use to do a hysteroscopy? Having had the op I would say that although the recovery will be at least 6 weeks off work, I am recovering more quickly than I did from the mastectomy and reconstruction op 4 years ago. At 54 I was glad to finally get rid of the heavy periods and as I saw it hopefully remove the risk of womb, ovarian and cervical cancers. I wish you well in your decision making, Nicola xx ... View more

Hi Helena, Thanks for your advice. It’s useful to know how soon I should be able to expect to walk a bit. So far only to the bathroom and back and to make myself a drink with the travel kettle! Not doing too bad with getting out of bed, and managing to sleep on my side if I keep my knees high but woke myself up yelping in pain this morning when something pulled.  I’m certainly in no hurry to do away with the painkillers! Still, the bonus is no more periods and my tummy definitely looks flatter (when it’s not blown up like a balloon with wind!). Goodness knows when my menopause would have finally come if I’d left things to continue, I’m 54 and was still having really heavy periods every month! Everyone I’ve spoken to who’s had the op says it’s the best thing they’ve done so hopefully I’ll feel the same in a few weeks.  I assume you’re pretty much back to normal mobility now? The physio told me it would be 12 weeks before everything inside heals. My jogging days seem a distant dream at the moment!  Nicola xx ... View more

Mine was also bikini line but dissolvable stitches, can’t believe how long the scar is, at least 30cm! The outside seems to be healing well but it’s really pulling inside when I stand or sit upright for longer than a couple of minutes! Still it is only a week since it was done, just have to be patient! Rang the breast unit today and they are checking my notes and getting back to me next week. Xx ... View more

That’s really helpful Helena thank you, I’m also wearing the compression stockings and have to do anti clotting injections into my stomach for two weeks. I’m taking it very steady and recovering ok so far. Couldn’t believe the length of the scar! As I said I would definitely rather stick to the tamoxifen than change so hopefully they will say the same to me. Xx ... View more

Hello ladies, looking for advice or other people’s experience. I had my total hysterectomy last Friday with ovaries, tubes and cervix removed as well. The surgeon said the fibroids in my womb were like clementines and were the size of a 5 month pregnancy! So far so good on the recovery, came home Monday and taking it very easy.  My query s over tamoxifen. I was diagnosed 4 years ago with DCIS and had left side mastectomy and reconstruction, during the surgery a 3mm invasive hormone + tumour was also found. Sentinel node biopsy was clear so I didn’t have radiotherapy or chemotherapy but was put on tamoxifen for 5 years as a “Belt and Braces” prevention.  This went on to cause my problems with womb thickening and polyps which led to the hysterectomy.  However, I came off the tamoxifen for 4 weeks before surgery because of clotting risk and the surgeon said I should contact the breast clinic about whether I should go back on tamoxifen or nothing or an alternative post menopausal drug. I have always got on ok with the tamoxifen apart from the womb issues and I’m reluctant to change now. Wondered if other people have any experience of continuing or changing post hysterectomy? Nic xx ... View more

Following on from my previous posts, I’m due to go in Friday for my hysterectomy. Getting a little anxious now but just really hope it doesn’t get cancelled as I want it over with! X ... View more

Hi Hiccup, Ive been taking tamoxifen for nearly 4 years and all the way through have continued having periods which are very heavy with large clots.  I’ve also had some bleeding between periods so have had two hysteroscopy procedures, both of which found s thickening of the womb (which can be a side effect of tamoxifen) and polyps which were removed and were benign. I also have fibroids which contributes to the heavy periods and as they have now found an ovarian cyst as well I have opted to have a hysterectomy in January.  Try not to panic as I think these problems whilst on tamoxifen are quite common. There is another thread on here where several ladies have reported similar symptoms.  It is worth asking the radiologist on the day as they might tell you what they can see, they told me. Good luck, let us know how you get on, Nic x ... View more

Sorry Helena I’ve just seen your other post, you must be gutted to have to wait! I remember being paranoid that they would cancel my mastectomy! Really hoping all goes smoothly for 9th for you, best wishes Nicola xx ... View more

Sorry Helena I’ve just seen your other post, you must be gutted to have to wait! I remember being paranoid that they would cancel my mastectomy! Really hoping all goes smoothly for 9th for you, best wishes Nicola xx ... View more

Hi Helena, I hope you are doing well and that you still managed to have your operation despite the cold You developed. Best wishes for a speedy recovery, let me know how you get on. Nicola x ... View more

Yes please let me know how you get on, all the best for 18th and hope all goes well. Nicola x ... View more

Hi All, just thought I would update since last post. My tumour marker blood tests were all normal, but my scan in July showed more polyps , the original fibroids which I have had for a long time and the ovarian cyst still there, plus no sign of menopause yet at 54! I finally had my appointment with the consultant on Wed, she said she wanted to discuss management options and she wanted me to have a Mirena Coil, but I don’t want to risk this because of BC. Having had a lot of time to think about this I was keen for her to do a hysterectomy as I know it’s a big op but feel it will remove a lot of risk factors as well as sorting my heavy periods problem. She has agreed to this and I have a provisional date for January. Xx ... View more

Hi Pepsi, I had a mastectomy with immediate reconstruction over three years ago, the build up to the op and nerves before I remember well, but it will soon be over and you will be rid of that cancer! I was sitting up by teatime having a meal. You do have to get used to moving without putting pressure on that arm, your core muscles work hard to move you around, and you have to carry 2 drains around for the first few days, but they usually give you a bag or holder to keep them in! Take it easy when you first go home as it will probably be painful to be upright for a while, you have to gradually build up standing/ walking time as it does pull on your chest a bit. But 3 years on it feels as if my “foob” is a part of me now and I no longer am aware of it all the time. (It does however always stay numb to touch), and cosmetically, even without clothes I am really pleased with the result. Good luck and hope all goes well, any questions please ask. Nic xx ... View more

Following on from my last post, I had a repeat ultrasound done last week and apparently the ovarian cyst is still there but hasn’t grown. Have had tumour marker blood tests done again but don’t know my results yet. Not sure whether to chase those results as have to wait till 5th Sept to see consultant again unless I can get a cancellation so if the blood tests are raised I shall only worry myself silly until I know what they are going to do! If only I could get away from all this uncertainty! Nic xx ... View more

My implant still shows some creases 3 years on , I think it was a bit uneven for the first few weeks but probably better to get it checked. I've always been able to see the internal stitching line but the overall result is pretty good. X ... View more

Sorry I didn’t reply before. The tumour markers were c125 and another one, the c125 (which I think shows ovarian) was clear but the other was slightly raised. I was whittling about it so my gp ordered a retest and it had dropped back to normal range. Apparently now my consultant has ordered another scan for July and wants me to do bloods again at same time. Trying not to worry about it since everything else was clear!  Nic x ... View more