Breast Cancer Now Forum

I just felt I had to join this thread. I had an MX in April (3 grade 2 IDC tumours, extensive DCIS and LCIS, ER+ 8/8, no node involvement). No chemo, no radiotherapy, just tam. I took it for about 3 weeks and then just stopped. The side effects were just too damaging to my quality of life. I put weight on immediately, developed a moon face, was mentally confused all the time to a ridiculous extent. One evening I pointed out the 'beautiful red moon' to my son. He told me it was the sun going down. I argued the toss with him, even saying, "if it's going down then must be the moon". The fatigue was like nothing I've ever experienced. For five days I couldn't be bothered to wash, get dressed or even answer the phone. Getting hives one night was the final straw. I confessed all at the clinic, and had a good chat with my onc. She looked at the predicted benefit from taking the tablets (0.9% over 5 years, 2% over 10) and said OK, don't take it, we'll review the situation in a year. She said that it would take up to 3 months for the drug to completely leave my system, but within a week I felt 'myself' again. I'm back at work, and have a much more positive mental attitude. I'm glad I made the decision as I've got my life back, and my children have got their mum back. Who knows what I'll do in a year's time, but for now I'm going to get over the mx, and get my life back on track, and enjoy every moment until decision time comes round again. ... View more

Hi Penny, I had biopsies under MRI last month, at Addenbrookes in Cambridge. They are also the team that developed the Predict module which is used to determine what adjuvant treatment is given. After my mastectomy last month they are so sure about their diagnosis and treatment that I'm not having chemo or radiotherapy, and they've even said that if the Tamoxifen really disagrees with me they'd be happy for me not to have that either. When I was being treated people were coming from quite a distance - as a teaching hospital for Cambridge University they tend to be very open to taking on the more unusual cases from elsewhere. I hope this helps a bit. Anna xx ... View more

It is with huge relief tinged with just a little sadness that I have to leave this amazing group of women after just a short time. I had my post MX results today and whilst they found 3 grade 2 tumours and extensive high grade DCIS and LCIS throughout the breast there was no lymph involvement, so just the tamo for me. I still can't quite believe it! Good luck to all the lovely, brave, funny ladies here, I'll be checking in to see how you're all getting on from time to time, but for now, this is my stop. Much love, Anna xxx ... View more

Hi Hamley, I shared your fear of drains, too! I tried the bra they gave me at the hospital with the softee today and as I've no dressing and my skin is so inflamed and sensitive it was pretty unbearable, so won't be doing that for a while! The glue is waterproof and yes, you can shower on the first day. It is most painful under my arm, like you, and the swelling is more painful there as there is a lot of fluid build up. Do you have much fluid? ... View more

Hello all, quite possibly another Moonbeam here . Had left mx and a handful of nodes removed last Tuesday, and get the results and treatment plan this Friday. I work in a school too, and they are keen for me to get back to work as soon as possible. They hired a temp for 6 weeks to cover my job - good luck with that then!! Lol! Beeny x ... View more

Thank you so much for all the advice and kind words. The op on Tuesday afternoon went well enough; apparently the first thing I did in the recovery room was look down my front and start screaming "It's gone! It's gone!". Nextstep, you are so right about being grateful to have the use of one arm, it has been a godsend and the surgeons were right not to let me have a bilateral mastectomy. I haven't worn a bra yet - I had no dressings on my wound at all, and the surface layer is glued together with no sutures or staples. I also had no drains (apparently they're going out of fashion!) so have probably got off quite easily. There has been some fluid build up, which at one stage was so uncomfortable they were on the brink of taking me back into surgery, but decided to give me nerve-blocking injections across my chest and monitor me for the morning after the op. When the swelling didn't increase, they decided to let me go home with pain relief. It's been very up and down since I came out on Wednesday, and I've had good days and bad days, as I'd expected. The wound, whilst spectacular, doesn't upset me at all, nor does the fact that I don't have a breast on the left side. Female Amazon warriors would have their left breasts cut off so that they could wear their arrow holders (can't remember what they're called!), and so I consider it to be my Amazon Warrior Wound. It will be nice when I can wear a bra to support the other side, though! I'm having my wound checked on Monday, and get my results on Friday of this week, so not too much waiting to go now. ... View more

I had such a good weekend thinking it was all sorted and knowing what was going to happen. Sigh. I'm just going to have to suck it up and get on with it. I'm sure there are a few ladies out there biting their tongues at what must seem like utter vanity in the face of a potentially life-threatening illness. I think I've been the whole of my focus on the surgery itself rather than the cancer, because I can't yet deal with the idea that I have cancer anyway. It still doesn't seem real at all - I haven't connected with it yet. So an operation to remove a breast just feels like I'm doing it for no reason really. I think I'm really tired and cried out and should just go to bed. I have to be up at 5 for a damned good hairwashing!! Thank you for the support, as always, I promise to be more positive in my next post. xx ... View more

Lola, apparently it's too much of a risk; there is the possibility that the wound would have problems healing and then that would delay chemo if I need it, and they can't justify doubling the risks. I understand that - but why tell me on Friday that that's what they would do? I seem to have separated surgery and cancer somehow, and can't quite knit them back together. At one point I told the consultant that if he wouldn't remove both breasts tomorrow then I wouldn't have surgery at all. And I know that sounds like utter madness - this has really messed with my head! ... View more

Hello Tracy, It's so nice of you to check in! I've had a crazy day!! Having spent since last Wednesday preparing myself for a bilateral mx - and I found lots of positives and read some wonderful breast-free threads on here, I went to clinic today to be told my right breast is clear and I only need the left mastectomy!! I was a bit shocked (in a good way), and then felt a wave of anxiety - that means I'll have an F cup and a flattie!! Not an option... so I asked if they would remove my good boob anyway, for symmetry. My surgeon went and found another surgeon, they came back and assessed my boobs again, went out again, and came back and said they really didn't want to take off a healthy breast, but how would I feel about having a reduction and uplift to my good boob to take it down two or three cup sizes? So that's what I've gone for, and it's happening on Tuesday next week. Yikes!! I've been so hyper all day, I'm now absolutely exhausted! Work have ignored my suggestions over the last month to get a temp in, so one of the bosses wives arrived at 2pm for a handover!! I have a very complicated computer-oriented aspect to my role, and let's just say she was quite pale after an hour or so. I'm seeing her at 7.30am on Monday for another session, then I have clinic at 9.30 and pre op checks at 11.00. Back to work for another couple of hours training and then that's me done! I feel so sorry for her, but I told them that once the tests were completed it would all happen very quickly. Ho hum! The only thing left for me to do in advance of Tuesday is buy a selection of bras (they can't tell what cup size I'll be!), and pack my bag. I've even managed to sort out hiring a bed wedge this evening and will get that on Monday. I think I'm going to sleep well tonight for the first time in ages. Anna xx ... View more

Nonny, Gillysmiff and Lyssy, thank you so much for your posts, I have taken a lot of comfort from them. I will shortly be having a bilateral mx, with no option for recon immediately, if ever. Initially diagnosed in the left breast, I was so concerned about being lopsided - I'm a 40F! It was almost a relief to find that I'd need both breasts removed. Does that sound awful? It feels awful to say it. I've been told that the scar will not be pretty, due to the excess weight I'm carrying, and i guess that will mean the dreaded dog-ears (which worry me more than the scars, to be honest). To hear that it's possible to get them dealt with later down the line is such a relief - I would rather that than the trauma of recon. Your positivity is contagious, and gives me courage to deal with this. Thank you. xxx ... View more

that went up twice so I'm trying to delete the second one! ... View more

chellebell, I just wanted to say hello and that this is the most amazing place with the most incredibly supportive people, I'm new here myself so don't have a huge amount of experience to offer advice, but there are so many who will offer words of comfort and wisdom having gone through the very thing we are going through: the dreaded waiting room. I've gleaned from other posts that even a grade 3 cancer doesn't move that fast, which is reassuring as I ignored warning signs for about 3 months before I saw my GP. It takes a while and a lot of emotions to get your head round things; be kind to yourself and keep coming back here with your questions and to let off steam and emotion. The hardest part for me was telling my children, and it is was only thinking about them that made me cry. A couple of weeks down the line and life is pretty normal for them - they've both told me they don't want me to have a wig so my daughter is researching about scarves and turbans and looking for some funky stuff for me! I've had panic attacks in the past, and what you describe sounds really similar. I would make another appointment to see your GP to discuss this with her/him, and also your worries and concerns about the wait. Don't be angry with yourself, there's no point. You'll need positive energy for the journey if the news is not good, and you'll have given yourself a pointless hard time if it turns out not to be BC. From what you've already gone through I'm guessing you're a pretty tough lady - I'm so sorry you find yourself here, but at least you've found the site and I would urge you to make good use of it during the awful waiting period. Big hugs xxx ... View more

I was up at 3.30am this morning too. I had the MRI biopsies done on my good boob on Wednesday, and now have to wait until Friday for the results. I really understand why you decided not to delay surgery - just another week's wait feels like it's crushing me. And to be honest, now that doubt has been cast over my good boob I just want the surgery and for them to remove both. It will always be a worry for me otherwise. Are you having a double mx on Monday? I was sure from your posts if they are unsure if the cancer has spread in the right breast or to the right breast. Either way, I'm sending you bigs hugs and lots of love. Anna xx ... View more

Melrose, I just knew we had more than BC in common!! Just been told I won't get the results on Monday, but will have to wait for clinic next Friday Another whole week before I know what the plan will be. Aaaarrrgghhh!!! ... View more

Now I'm really worried!! I'm a Registrar at an independent school, and have just discovered that I will be entitled to 17 days sick leave on full pay, then I can use up the 12 days annual leave I have left and after that it will be SSP of £87 a week. I also am expected to make up any time I take off for medical reasons in the meantime, or take it from my annual leave. I was in an MRI scanner for over 2 hours this morning having MRI-guided biopsies taken, and was at work before and straight after. I will be having a bilateral mx and SNB in a week or so's time, followed by rads and chemo. I had some great idea that I could actually go back to work after 3 or 4 weeks; as a single parent with a mortgage and teenage kids we can't survive on SSP! I think I've been utterly deluding myself from what I've read! I was mildly annoyed to discover that teaching staff get a far better deal of 3 months on full pay and then 6 months on half pay, while admin staff get 20 days in every rolling 12 months. Ho hum!! That's my pity party over, thanks for letting me blow off steam here!! ... View more