Breast Cancer Now Forum

Hi @juliedoc12  I had my double mastectomy 7 weeks ago. I had 3cm aggressive HER2+ tumour on left side and LCIS on right. Surgeon suggested mastectomy on one side but because of family history I opted for bilateral - so pleased I did. I hope to have recon in a couple of years but am happy to wait.   By having bilateral, I feel that most of the anxiety is now gone, indeed, my surgeon has now told me that I am disease free and by having all of my breast tissue removed (hopefully), I have just about eradicated the chances of it coming back. win win ... View more

Hi @Tracyanne  I too have a positive story so far. At 51, I was diagnosed with HER+ BC in October 2020 and had an immediate mammoplasty where they removed about 1/3 of my left breast. The pathology results showed the margins weren't clear so I was booked in for a completion mastectomy after my chemo finished. However, due to family history and the presence of LCIS in my right breast, we (joint decision with myself and the MDT) opted for a bilateral mastectomy which was carried out on 23rd June this year. Due to the recent chemotherapy, I wasn't allowed an immediate reconstruction but I do know people who went straight to silicone implants, which was done at same time as mastectomy and they are happy. What to expect: When you go into hospital they will mark up your chest with a felt tip pen - it all feels a bit surreal. Ask plenty of questions about where the scar will be, recovery etc. you then go into surgery and you wont know anything about it til you come round in recovery. I had something called a PICO-7 dressing on afterwards which is a vacuum dressing and it ran horizontally across my chest from arm pit to arm pit. With the Pico dressing you have a tiny little pump on each side which sucks the air out of the dressing to keep it sterile. It's mildly irritating with its buzzing but is reassuring that it aids recovery. You will also have drains attached on both sides. These are really an inconvenience as they are attached with a stitch. You have to carry them around with you everywhere. You can buy mastectomy PJs which I would recommend - they have drain pockets which make things much easier - I got mine from Asda Online. If you don't have those, I would recommend getting hold of two drain bags (your hospital might provide them but mine didn't, so make sure you ask). You keep the drains until they drain less than 50ml fluid - for me that meant mine were taken out by the district nurse team on Day 5. Pain wasn't too bad - i just made sure I asked for the pain killers regularly - i was offered codeine, ibuprofen, paracetamol and Ora-Morph. The latter was a godsend. I cant tolerate morphine in injection form, makes me throw up, but this was amazing! I was allowed home the next day and was given codeine but to be honest I didn't need it after a few days and was fine on ibuprofen and paracetamol. The wound is now completely healed 7 weeks on. If you haven't had a reconstruction, I would avoid wearing a bra until it is healed as any rubbing against the wound will be sore. You should be given some 'softies' in the hospital. These are soft foam boob forms that fit into a mastectomy bra. Regarding the bra, I personally prefer a front fastening one as its easier as your arms will be sore after the op, especially if you have had nodes removed too. Some great ones on Nicola Jane website. Once your wound has completely healed you can get a prosthetic from your Breast Care Nurse - I haven't collected mine yet. For me, reconstruction will be a DIEP (tummy tuck) one. And to be honest, I'm so fed up with being in and out of hospital for the last 10 months, I don't mind waiting a couple for years for it. If you choose to go straight to silicone reconstruction, make sure you talk things through with your surgeon as there are different weights and shapes available. I've heard of people, showing photos from google to their surgeon to make sure they get what they want - remember it's your choice but the surgeon will guide you as to what might be best for your shape and chest wall. After reconstruction, you will need to wear a sports bra/tight fitting bra for quite a while to keep them in place - hopefully someone who has had that procedure will comment on here to let you know what to expect. Emotionally, I'm doing ok. The biggest shock for me was looking down at my chest for the first time. I thought I would be upset seeing the scar but honestly, for me, the biggest shock was seeing my tummy for the first time!! Usually there was two big boobs in the way. You will adapt though and as has already been said, you will need to keep stretching and moisturising but that just becomes a new routine. 3 weeks before the op, I started a course of arm strengthening exercises which I think really helped me. Your BCN should be able to help with some counselling as its a big thing to get your head around. I hope this has helped and that you are confident to chat with your surgeon about your options. Please feel free to message me if you have any questions. Good luck xxx   ... View more

Yep - last one today. Feeling ok and looking forward to closure when I have my completion mastectomy in June tho I’m not sure we will ever have total closure fr this awful disease.  Question: if you have a bilateral mastectomy and there has been no evidence of spread, are you free from the worry of secondary breast cancer? ... View more

Good luck this week @tennisgirl - all the BC stuff going on as well as elections! Were the injections the bone marrow ones? I absolutely hate them and only start to feel better once I have finished them each cycle.  We managed to get away to the sea side this weekend and despite the changeable weather it has been just the R&R we both needed. The end of chemo brings the start of another phase for lots of us, whether that be start of radiotherapy, breast surgery or simply a return to work - they are all major emotional events so we must make sure we keep supporting each other on here.  loads of love everyone xx ... View more

Wow chat on here is really tailoring off, I assume as we are finishing our treatment. It would be good to keep supporting each other during the next phases for everyone.  I'm just home from #5 so one more to go. Such a good feeling! Thankfully my PICC line held up.  How is everyone doing?  Mumboo and Florreebee had treatment this week and know Belinda is tomorrow. donkey woman is now onto Herceptin only ? tennis girl how are your feeling this week? Are the injections you speak of the filgrastim? I hate them! How’s everyone else? Erin, Gelbel, Pesto and anyone else I’ve forgotten. Sorry am typing on my phone so can’t look back to check names! Hope you’re are all ok! ... View more

Hi @Erin 35  i am so very sorry for your loss, such a shock at a time when you and your dad are at your lowest. Please take care of yourself. Biggest hug to you xxxx ive felt well this week ahead of #5 on Thursday and hubby and I even managed a weekend away this weekend. It was so lovely and the sun was out. But boy am I tired now. Just as we arrived at my holiday home my PICC Line arm felt quite heavy and on investigation, I have a tender lump under the skin a couple of cm after the insertion. It’s remained tender over the weekend but hasn’t got bigger. I have a flush and bloods tomorrow so will ask the nurse but has anyone else had this?  re docetaxil mine has ranged from first dose of 164 and the last couple have been 132. The onco adjusts mine each month dependent on how the side effects have been. For me it has mainly been joint aches (incl lower back like period pain) and tiredness. I don’t often feel too nauseous luckily.  Good luck everyone for the week ahead. Loads of love xxx ... View more

So pleased @tennisgirl @that you didn’t find it too bad. Have your asked about a PICC line? Don’t forget to keep a detailed diary of all your side effects so you can plan better for cycle 2.  I got my period too just after my first round but haven’t had one since.  we are all here for you xx ... View more

Hi, how’s everyone doing? I had an exciting day out today as when I went for my PICC line flush they realised it was blocked. 6 flushes later, still no movement so off to a dif hospital to have some drugs injected which thankfully worked. It’s only got to last another 5 weeks.... fingers crossed.  I know Tennisgirl is having treatment this week and Belinda on Friday - anyone else? ... View more

hi @FlorrieBee i have a family history of BC and prostate cancer through my fathers line so they wanted to test. they still think it is unlikely especially as I am HER2+ but worth knowing if anything for my children's sake. it takes ages for them to contact you in the first place and then once the test is done - 12 weeks for result! ... View more

Hi everyone  - just catching up with all your messages  I’m doing well after #4 last week and managed a nice walk yesterday . Great to think only two more to go ... but then Herceptin for a year. I think we are at the same stage @Guest user?  one piece of news is that I’m waiting for the results of the BRCa test which will effect the surgery I have post chemo. For some reason it takes 3 months to get the result?!!! Weird   @Gelbel I have to present in my job too and I know there is no way I could do that at the moment so wigs off to you! I love doing it though and can’t wait for more normal times (for me and the world) when those presentations can start again. I live in Windsor ..... it’s very somber at the moment. I think his death has effected people much more than they ever thought possible. I met him a few times and he was inspirational. But what a legacy he has left with all his charity work.  love to everyone  hope yesterday went ok @@Belinda_   ... View more

Oh that’s excellent news. I feel your frustration- I felt like I was waiting for ages. I’m doing ok. Chemo isn’t nice but totally do-able. You’ve so go this! How’s the weather in Scotland? Cold I bet!! ... View more

Hi everyone - so sorry for radio silence. I’ve been trying to quietly just get on with things since #4 TC last week. But through the worst now I think - queasy with joint aches but not too bad. so pleased 2/3 way through now.  @tennisgirl how is your wound? Any update on when you can start chemo? ... View more

No sleep ... bloody steroids. Good luck all having treatment today! ... View more

@Erin 35 @Your post rang true with me too. Lockdown easing means more exposure to people and like DW I like to blend in and not be noticed. I’ve gained weight over lockdown but have lost a few kilos during chemo but still badly overweight and also have now lost a lot of hair so am not allowed to cold cap anymore. I have a couple of wigs which I’m told look fantastic but I am too self conscious to wear them.  so I’ve been feeling a bit blue ahead of #4 treatment on Thursday. But like you say @FlorrieBee  I will then be 2/3 way through! Starting to feel the dread of treatment day coming and steroid say tomorrow!! ... View more

Hi @tennisgirl I had the same with my wound. Was so frustrating but it’s good advice. One of my scars is definitely degrading a bit with the chemo and if I hadn’t waited until it totally healed it would have been a real problem.  i think if you ask most of the ladies on here they will tell you they were all worried about the side effects and injections too but you will cope with it all      . Keep a diary so that you know from cycle to cycle how your body is affected and you learn from that. Ie I know I need to take sennakot for the first few days after chemo else I get constipated. It can be really tough and you’ll have good and bad days but we are all here and understand so please keep asking questions.  hope everyone is doing ok. I’ve had a good few days and have been out for some nice walks ahead of #4 TCH next week. Also been working which, although tiring, has been great for my brain!  ... View more

Ah ok! Gotcha! My go to sweets have been fizzy sours from Waitrose. Can’t get enough of them ..... like tangtastics. I think it’s because I can actually taste them. Other go to foods are things like piccalilli- anything that’s really sour. Weird isn’t it! I too had a good day yesterday - recovered much quicker this time and I think def benefited from a lower docetaxil dose. My nails seem fine but am almost worried enough to put some black nail varnish on ... not a girly girl so all new to me!  as I sit here writing this my nose is a constant drip .... 💧. Yesterday it had a lovely streak of blood in it from my crusty bogies!! Lovely look!! have a lovely relaxing ah day everyone xxx ... View more

Ooh what are queasy pops? I haven’t had that reaction to docetaxil yet but I’m only 3 in and I have heard of somebody that did struggle with their hands. No issues with nails yet. For me it’s the joint pain and I think the injections don’t help that either.  I got though the chemo fog much quicker this cycle and even managed a fairly long walk today (day 10 post treatment) though this has resulted in me dozing on the sofa for the rest of the day! hows everyone doing? There’s not as much posting this week so hoping it’s due to better weather and that people aren’t struggling too much xxx   ... View more

How great is it that its your last EC tomorrow @Gelbel - is that you finished then or are you changing drugs? I've never had the red wee thankfully but can imagine you wont miss it! I had a therapeutic mammoplasty so they re shaped my boob with existing tissue, but will be having mastectomy once chemo finishes. Must admit i think i prefer the idea of a prosthetic rather than an implant but all things i need to discuss with the surgeon nearer the time. I'm feeling much brighter today thanks @donkeywoman - annoyed with myself for becoming constipated and then once that goes wrong you just feel generally bleurghh dont you! But much better now. Half way through for me now ....bell in sight!! Thinking of everyone having treatment this week or dealing with the bleurghhhhh. Take care xx ... View more

Hi everyone sorry for the radio silence. Yes been a bit bleurghh since #3 last Thursday. Cumulative effects aren’t great and have been feeling quite sick. Hopefully will turn a corner today as have finished injections.  good luck with your treatment on Friday @Gelbel and @Pesto, I hope you’re doing ok xxxxx and hi everyone else xxxx ... View more

@donkeywoman  I had my docetaxil reduced today but wasn’t told about it. Dose is now 132mg down from 164mg with 560mg carbo down from 630mg and 600mg Herceptin - remained the same throughout . My Hb was 107. I have no idea what that means but has dropped from 123 for my first treatment. Should I be taking supplements?? I’m not taking anything other than making sure I have plenty of fibre.  @Pesto same a DW, wishing you all the best for your scan.  @donkeywoman  @Belinda_F  hope all goes well tomorrow xx ... View more