New diagnosis - right decision?

Hi, I was diagnosed on Tuesday. After working through mammogram to ultrasound, to someone more senior on ultrasound to biopsy I wasn’t expecting good news. I was therefore almost euphoric with relief that my tumour (2cm with some calcification around it) is grade (or is it stage?) 1 which I thought was the best I could hope for. I was offered a WLE but would lose the top half of my breast because of the need for a margin around the calcifications. No sign of any problem in the lymph nodes but will need SNB to confirm. I have opted for MX (on 1 March) with no reconstruction because I don’t really want half a breast and I would rather lose my breast than risk having problems with my back due to them taking tissue from that. Now if the tummy tuck had been an option that might have been different Apparently just an implant isn’t an option.
I am very much a glass half full person (much to some people’s irritation!) and see this as a good result and also I think about the lads in Afghanistan losing much more important bits of their bodies and having to cope with a false arm or leg rather than a false boob. I am not daft though - I am telling myself to bear in mind that I have no idea how I will feel afterwards. Has anyone had MX without reconstruction and how did you feel afterwards? I am 48, will not be feeding any more babies, haven’t worn bikins for years and am not a low cut top kind of person.
I will have to take Tamoxifen and have read a few posts that suggest it could cause depression (not good - have a husband with that, can’t inflict two of us on my boys), joint pains (also not good, I’m hypermobile so my joints dislocate easier tham most and have some problems already with nerve compression) and some horrible sounding discharge (and who would want that!). Can anyone tell me they have been ok with it?
Sorry for the length!

Hi Nextstep,

So sorry that you have to join this elite club, but it sounds as if you are coping really well and asking some really good questions. I was dx with a huge grade 3 tumour at 47 (2.5 years ago) and after chemo to shrink it had a mastectomony (mx) and immediate reconstruction with the back muscle option. For me it was the right choice, but lots of women are very happy not to choose that route, and are comfortable with prostheses.

As far as Tamoxifen is concerned, yes all those side effects can happen, but very few people get them all, and most get none. The flip side of a good site like this one is that you read posts from lots of people who are experiencing yucky side effects, not the majoirty who are fine. I am one of the few people who have fairly severe joint pain with Tamoxifen, a lot more suffer with morning stiffness which eases as soon as they get moving again. Mine is managed with ibuprofen 400mg three times a day, and I have been told I can have stronger drugs if needed. For me, it is a no-brainer because my cancer was aggressive: I would choose sore joints, hot flushes and (because I am working my way down the list of side effects!) endometrial hyperplasia (benign, phew) every time over the risk of the cancer coming back. I do not have hypermobility but have a friend who does, and when she and I compare notes, I think there is some similarity in the kind of pain, but mine if far less debilitating overall.

By the way, stages of cancer are (broadly) about tumour size and node involvement; grades are about how abnormal the cells are, with grade 1 being the least and 3 the most//worst. A lump under 2cm with no node involvment is probably going to be stage 1, it could also be grade 1, but you won’t get a definitive grade until after they have done the surgery and have full pathology.

Hope all goes well for you and that you are soon moving forward back to health and strength.

Hi Nextstep,

I’ve been on Tamoxifen for 12 months now. When I was first diagnosed, I read plenty of nightmare stories about Taxomifen on these forums which really, really upset me. As RevCat says, people will always post about the negative stuff and less so about the good stuff. This does give an unbalanced view. Also, many people do not get bad side effects so remember this.

I am 44 years old. My symptoms 12 months on is that I occasionally feel a bit warm. Easily resolved by removing a blanket off the bed and such a minor thing to put up with. I also have more mobile joints and have had no joint problems. I am pre-menopausal and Taxomifen has a varied effect on your periods. For me, they stayed regular, got heavier for a day but were of shorter duration. Continuing your periods does not mean the Tamoxifen is not working.

The ‘temperature fluctuations’ started 21 days after starting Tamoxifen, and to be honest they were difficult to handle with little sleep for several weeks. Most of this in hindsight was made worse by me getting upset about the hot flashes. Once I stopped panicking about feeling hot, things settled down quickly and got better over time to the stage I am now. I get warm days maybe several times a month, but that’s it.

If you do get symptoms with Taxomifen, do persist with the knowledge most symptoms settle down with a bit of time.
I can’t offer advice on the MX as I had a lumpectomy.

Good luck with your journey ahead.

Hi Nextstep,
I always knew I wanted a reconstruction, but I wasn’t allowed an immediate one. Due to having both chemo and herceptin I didn’t even go on the waiting list till all that was over, and finally got my recon three years after my mx. I hated being flat on one side, and am so pleased with my recon. But I have friends who are perfectly happy without going down that route. It is such a personal decision, only you can decide what is right for you. At the moment you don’t want a recon, so go with that. It is not a now or never decision, you can always go back later and ask for one if you change your mind. One of my friends saw a plastic surgeon seven years after her mx to discuss a recon, but ended up deciding it still wasn’t for her.
As for tamoxifen - what the others have said is true, we don’t come on here to say we have no side effects, we come on here to get help with the ones that are causing us problems. I finished five years of tamoxifen last October. I couldn’t wait to finish as I had problems with hot flushes all the way through. But I never had any depression (didn’t even realise that was a possible problem), and was only stiff walking across the bedroom first thing in the morning. By the time I emerged from the shower I was fine.
Don’t go looking for problems before you start. You may well be one of the many who sail through with it.

Hi Nextstep, your comments sounded just like mine last year! I had a WLE followed by a MX 6 weeks later at the age of 46. I wasn’t offered a recon as I was taking warfarin at that stage. For me losing one breast really hasn’t been that bad: it probably helps that I didn’t have much in the first place and have always used a bra for ‘scaffolding’ rather than support!
Most people I work with are unaware that I have had cancer and lost a breast, and once dressed, you really can’t tell. Summer was a little challenging, but skinny ribbed vest tops work well. Silly things like loading a supermarket trolley can be a problem with lower necklines and gaping. I go swimming twice a week, so it’s not holding me back. I am not considering recon at the moment as I can’t face any more surgery and the thought of having bits of my body cut off and moved leaves me cold. I do think women should be told that going breast free is an option: when I said to a BCN that I didn’t want a recon her answer was “you’ll change your mind”. Maybe I will (but it’s unlikely) but I resent the fact that there is an assumption that everyone wants a recon.

I also have slight truncal lympheodema; another reason why I don’t want more surgery.

I have been taking tamoxafin since June and have had no side effects, except that my periods stopped, returned for two months and have gone again :slight_smile:

i was diagnosed in Sept 2010 after been given the all clear in the previous Jan. I had high grade DCIS 5mm and I opted for a mx without reconstruction. I have no problems with wearing a false boob I wear a contact one which sticks to my chest wall. I a m a very active person go to the gym and play squash, buying good fitting bras is the key to looking good. I have also just returned from a weeks holiday in St Lucia wearing bikins and feeling fine. I also take tamoxifen as a prevention to getting cancer in my other breast I have had very little side affects some stiffness in my joints and some hot sweats in bed at nights but both of these are manageable. Hope this is helpful and hope you keep well.

That is really helpful Suziex - I’m reassured that I’m making the right decision for me at this time. I went for my pre op today and the BCN went through things again - apparently it’s 3cm (not 2cm as I’d previously understood) and then there is this “indeterminate” calcification around it and then there would be a margin. I’m not sure there would be a lot left if I went for a lumpectomy as I’m not huge!
I’m just really hoping for a clear SNB as then it doesn’t look like rads or chemo; just the tamoxifen because the tumour is showing up as strongly receptive to oestrogen.
When I think back to when I breastfed I remember thinking that sometimes in one spot I could really feel the milk pulling through and I’m pretty sure it was around the tumour site - could it have been there growing slowly for ten yers? Not that it really matters I suppose but it would just be interesting to know. I should have asked today I suppose.