Breast Cancer Now Forum

CeliaRose thank you so much for your lovely message. It is great to hear that you are doing well after making your difficult decision. I so very nearly didn’t post at all on this thread, since I felt others wouldn’t understand and this road can be such a lonely place at the best of times. Thank you for your kind, understanding and encouraging words, showing that there is a life beyond. ... View more

I’ve been mulling over this precise decision for far too long now. I have PTSD which makes any/all medical contact/intervention deeply traumatic, and sadly this has very much complicated my journey to date. The predict tool wasn’t terribly encouraging at all in my situation. It was initially presented that chemotherapy was a “must do” for me.  Having ripped myself to pieces for months, I’ve today finally decided that chemotherapy isn’t for me. Was this an easy decision? Absolutely not, its one of the hardest I’ve ever made. Is it the right decision? I guess time will tell. Is it the right decision for me and my family at this time? Yes. Do I feel guilty already? Yes but I also know that there is no practical scenario whereby I could sit through chemotherapy and retain the essence of me 😭 . I realise that by opting out of chemotherapy which was scheduled for 4 x EC then 12 x Pac I’m travelling a road less travelled, and this may well affect my overall life expectancy. Due to some random and total fluke I was seen by a very eminent oncologist last week.  I’m following their advice i.e. just because the treatment plan says xyz doesn’t mean that’s right for you - the treatment plan has to match the patient. His strong advice was that IF I decided to reject chemotherapy I MUST do radiotherapy, tamoxifen, ovarian suppression and biophosphonates which together and combined should massively boost my life chances. All of these were, he felt, more realistically achievable for me. There are no other (sensible) opt outs for me, but he has helped me to appreciate that there was another path, which in my particular circumstances is equally valid. I wish I could have taken a more regular route, but since you can’t treat the trauma of PTSD whilst you’re in it, I have to do what I can, and not what others think I should do. To chemo or not, is not an easy decision for anyone. All any of us can do is try our best and do what we can do, and move on from that we can’t. With love and respect to you all whatever you decide. ... View more

What bra to use post op is a difficult one. I too was a 36J before my smx and immediate implant reconstruction at the end of May this year. I now have one breast at a 36J still and then the (much) smaller reconstructed fake boob. I will eventually need surgery to even me up. The bcn suggested cutting the wires out of bras that I already had and using bra extenders so I’d know the bras would fit?! For me that wasn’t a good, helpful or sensitive suggestion on this disempowering journey YMMV. However, I’ve found that whilst NOT cheap the best thing for me is the Theya Healthcare bamboo peony front fastening post surgery bras. They adjust across the front and by length of straps and whilst not sexy aren’t as frumpy as some of the ones I’ve looked at. I found the XL size works for me. I managed to find some in the sale online at House of Fraser (of all places) that were only £33 each, whereas at Amazon, Bravissimo, Cancer care etc they’re closer to £50 or more. FYI Bamboo is super comfortable, temperature regulating and has natural antibacterial properties which is important when you’re trussed up like a chicken 24/7 post op! Sports or sleep bras are also worth considering, and hopefully you’ll find something that works for you. ... View more

Hi Shi and thank you. Yes I’m totally scrambled at the minute, but I have to hope this too passes 🤞 . Thank you also for signposting me to the mountain lion post by strawberry blonde - it’s very on point right now, and you’re right its an inspiring read ❤️ . Thank you and take care x. ... View more

Hi Sharlea thank you so much for your lovely message, and the positivity that chemotherapy doesn’t equal the end! Wow literally climbing mountains that’s inspiring. I’m 48 and definitely pre-menopausal. After reading of the importance of establishing status on the forum I asked to be tested after my initial diagnosis. I’ve had c20+ years on the pill, largely without periods and so honestly had no clue given my age.  The blood test confirmed my pre-menopausal status, but I’ve also now restarted periods (yay er not really) and so I get why they’re saying Tamoxifen at this stage, given I have strongly ER+ but HER2- cancer. Due to previous surgeries I am limited in what anti-sickness meds I can take, and my abdominal damage makes this difficult too. I really don’t know enough yet to say what is possible, but I am grateful for your lovely message and hope x. ... View more

Hi so I got my preliminary results on Friday (final ones not back yet!) and unfortunately its not good. 2 cancerous tumours not sure of size but think consultant said both c2cm+, area between the 2 no results or size yet but fear is pre/cancerous, also spread to 6/8 lymph nodes they removed. My wound has an area which isn’t healing as quickly as they’d like so it was redressed yesterday and I’ve to go back for redressing and assessment if I need to return to theatre for them to clean it out and reseal- totally not cool given my PTSD!!! Oh and if that wasn’t enough they’re now muttering CT scan before chemotherapy, radiotherapy and 10 years of Tamoxifen. They don’t seem receptive to doing the Oncotype Dx testing at all because of the positive lymph nodes. I’m bereft. I absolutely don’t want to have chemotherapy and it feels like the nightmare that just keeps on giving atm tbh. My initial thought is to just opt out of everything else and “enjoy” the time I’ve got left as I don’t want to put my kids or husband (or me) through chemotherapy or any more stuff. Sorry to bring the mood down ladies.  I am genuinely pleased for those with better news than I. Take care all x. ... View more

Hi Jacqu so good to hear that your results and margins are good with clear lymph nodes! its also reassuring that they’re offering you Oncotype Dx testing to see if chemotherapy will be of benefit 🤞 that you’ll be spared chemo x ... View more

Thanks Sarahx. I’d already tried wet wipes without any effect 😳 !! Honestly I think road tar has less adhesive properties. I tried nail varnish remover this morning which after some scrubbing has removed most but not all of the residue, and I’ll have another go tomorrow. I’m having a bit of a wobble again today, as I’d psyched myself up not only to go back to the clinic yesterday (due to my PTSD) but felt ok about the sledgehammer that will be results, only for that not to happen. Today, however illogical, I’m convinced that when they’re in they’ll be bad and involve a massive upstaging and upgrading and not only more surgery but chemo and radiotherapy plus a pharmacy of drugs! And so the rollercoaster goes on eh? At least it seems from the forum that whether or not chemotherapy would be beneficial is being tested (Oncotype) rather than a blanket referral to chemo, Take care all x ... View more

Hi Sarahx so pleased for you that your results are good that’s really encouraging 👍 . Sorry to hear that your wound isn’t quite there yet but it definitely sounds like it’s improving, and the antibiotics will help with that. I’m really pleased for you xx. Unfortunately I’m not really much further forward today, since my results aren’t back yet and haven’t been through MDT 😔 . I’m told that there’s nothing sinister in that as several ladies are in the same position, but that doesn’t stop my overactive catastrophic mind right now. On the positive side I finally got rid of the drain yay!!! Oh and I’m almost finished with the 2 week course of antibiotics I was discharged with. I’m told that the wound is healing well, and looks better today even than it did on Friday last week 🤞 . I just need to get rid of the horrible sticky dressing residue now that’s all over my torso! The bcn today suggested nail polish remover (acetone?) has anyone found anything better? ... View more

Oh Sharlea I’m so pleased for you that’s fantastic news!!! 97mm and clear margins no spread - amazing and so hopeful! I haven’t heard of genomics testing but it sounds like they’re going to do the Oncotype Dx testing. I believe from what I've read that is sometimes done to help assess whether chemotherapy would be beneficial? Have you tried asking the bcns on here, or your own team bcns for more details? Sadly I didn’t get my results at clinic today as expected since they weren’t back in time for MDT. 🤞 they’ll be back and considered when I go back to clinic on Friday. I was told it doesn’t necessarily mean anything that they’re not back yet, and several ladies are also waiting. Unfortunately, it doesn’t stop the pessimistic gremlin on my shoulder from catastrophising in the meantime 😔 . I did manage to lose the dreaded drain today though so it wasn’t a wasted journey and wow it’s so nice to ditch the drain!! Please update once you know more xx ... View more

Brekken hello and welcome 👋 . I’m sorry to hear your diagnosis but pleased that you’re joining in. I had a single full mx, snb and immediate implant reconstruction surgery on 25/5 so almost 2 weeks ago now and a little behind you. Unlike you I’ve had quite a bit of pain, although it is now subsiding.  Like you I’ve also had/have the shooting pains at times which I’m sure I’ve read is nerve healing/reconnecting. The bcns on here can specifically advise re this plus of course your own medical team, but I’ve read of others experiencing similar, and I’m not unduly worried about these. From the moment of diagnosis I’ve found it is an emotional rollercoaster, mangle and tsunami combined, and so if your surgery happened hot on the heels of diagnosis it sounds entirely normal to me that your emotions are struggling to catch up. I too am always my harshest critic, and so I also understand when you say that you struggle with self care, but please try and persevere. You’re doing your absolute best to try and do what you need to do to get through this bleeping storm right now, and in my book that means that if you need a good cry now and then that’s entirely normal and understandable. Similarly, if you need to lie on the sofa and watch a trashy film with a bowl of fruit/chocolate bar that too is fine! Eventually this too will pass - we have to believe that. I can’t really help re time off work as I work in our business - I knew sleeping with the boss had to have some advantages lol! All I would say is that it’s still relatively early days for you post surgery, and there’s no such thing as a standard time off work. Thankfully we’re all limited edition and unique, and from what you say it sounds too early (yet) for you, to do a full return to work. I would talk to your medical team and employer. Do you know what plan there is for any further treatment/medication/surgery? Perhaps your employer would be open to a phased return increasing from part time? There is employment legislation in place to protect those diagnosed with cancer.  I’m sending you a virtual hug and positive vibes. Whatever you decide to do let us know how you’re doing x ... View more

Hi Sarahx sadly the drain is still (just about) in, although it’s really uncomfortable and feels like it is hanging and dragging despite 2 attempts to re-dress/hang/tidy it. I also got my wounds redressed on Friday, but since my surgeon prefers the drain to stay in for 2 weeks post op its been left in, although it’s draining next to nothing now. Like you I’m back to see the surgeon on Monday probably with results and a discussion of what’s next - I’m dreading it, and given my PTSD I don’t know how on earth I’ll cope if further surgery is required. I still feel quite sore but then despite feeling like it’s been ages I suppose in real terms it is still early days, I’m just impatient to regain independence and the car keys lol! Good luck for Monday’s appointment, and come back and let us know how you get on xx ... View more

Hi Jacqu oh crickey that would have freaked me out too! Have you managed to get in touch with your breast care team yet? I don’t remember anyone discussing seromas pre-op but I might have missed it, not sure I know what it is. Do you need to have it drained?  Hopefully your care team can help/advise/sort it out for you soon 🤞 . Sending you hugs and positive vibes. I’m just back from the clinic, and my pico and super sexy stockings have gone 👋 🎉 !! My drain is here to stay (for now) but it was redressed and is more comfortable than before. I think generally they’re pretty happy with the wound so far and 🤞 that continues. I’m back on Friday for another wound check. The bcn today says it can take up to 6 months for the wound and implant to finally settle down and reach its end shape?!! Every day’s a school day eh? How’s everyone else doing? Sending everyone good wishes this sunny day 👋   ... View more

Hi Sarahx and I’m sorry to hear that you had such an eventful Friday. Luckily I’ve not leaked that much but I’m obsessed by the colour and amount of discharge in the drain. My pico is actually driving me nuts now too since it’s constantly buzzing and sucking, and makes it difficult to rest. I know I sound like a very ungrateful individual when pico isn’t offered to everyone, but I’m so tired. I think someone said that the pico battery only lasts a week anyway. I’m back at the clinic tomorrow (delayed a day due to B/H) when I’m expecting to lose this pico and be redressed, probably with a more regular dressing? How are you getting on with the iodine dressing? Hopefully tomorrow we’ll both get sorted out wound checked and reset again, let us know how you get on. Best wishes everyone 🤗   ... View more

Hi Crooky and wow you have a new date I’ll be keeping my fingers and toes crossed for you. How are you feeling about equalisation, is that as scary as the original surgery? I’m really pleased to hear that your pico worked so well, and hope that mine is paying attention and will also perform well 🤞 . Since its initial faltering steps and return visit to clinic last week, my pico is now constantly buzzing like an over excited love toy iykwim!! Its driving me nuts and my skin is sucked into a very fetching ripple pattern 😬 so I’m really hoping it’s going to be worth it 🤞 , either that or I’ll need a good ironing 😂 . ... View more

Hi Miopus good to hear from you. My surgery was last Tuesday, so I’m a day behind you. If I’ve understood you correctly, you had surgery on both sides? No wonder if you’re still sore! I’m sending you a great big virtual hug and want to say well done! I only had one side operated on (for now) but am still quite sore atm, but I hope & think each day things will move a tiny bit forward, even if it doesn’t always seem that way to us. Do you have a follow up clinic appointment yet? Do you have drain(s) in still? Personally I think I’ll feel much better when I can ditch my little friend in a bag and have a shower! Let us know how you’re doing xx ... View more

Oh Jacqu well done you for being spooked, feeling the fear and doing it anyway! You’re awesome! I’m also in the no bath/showers club and I could cheerfully set fire to the glamour stockings 😆 ! I had to go to the clinic to get my pico (sucking) dressing checked on Thursday as it wasn’t sucking, so the tapes have been slightly modified, but it and the drain have to stay in at least until Tuesday next week. I think originally they said that I’d have to keep the drain and glamour stockings for 2 weeks post op but I’m hoping it won’t be that long. Today just to add variety the pico has started sucking repeatedly for about 10 minutes at a time (machine glows green so all good), and sounds like a mumbled phone ringing out - where’s the answerphone gone 😂 ?!  We’re definitely moving forwards ladies - well done all x ... View more

Hi Sjm51 hello and welcome to the forum. I’m sorry to hear about your diagnosis and can feel the pressure you’re feeling to make the “right” decision, so I’m sending you a virtual hug. This is a difficult enough time so try to be kind to yourself along the way. Lumpectomy v mastectomy is such a big decision and depending upon the stage and type of cancer outcomes can be very similar (reading around the subject). Listen to your gut feeling if the medical advice is inconclusive, and remember this is your journey, and you decide. Luckily (I guess) I didn’t have to make your decision since my diagnosis predicated a single and full mastectomy which I had on 25/5, with an immediate implant reconstruction (my only option) so I’m still pretty drugged up and sore and still have a way to go. Sending you very best wishes x ... View more

Hello Sharlea how are you doing? I hope you’re ok and that your surgery today went well today 🤞 ? I’m sending you lots of positive thoughts.. I managed not to bolt but OMG it was a close run thing! The staff were all incredibly kind to me today and tried super hard to understand, and for that I’m really grateful to them all. I’m totally drugged up and super glamorous (not) in my trendy stockings, drain and sucking dressing but … I made it home and am so relieved! ... View more

Crooky thank you for sharing your experience with the “sucky” battery operated wound dressing. It does sound a bit weird but it’s reassuring to know that it helped you! Good luck at your oncologist appointment on Tuesday. Re further surgery anxiety it’s understandable as we’re all the product of our experiences, and cancer has dealt your body a huge shock. Be kind to yourself. You have already come so far and are travelling onwards and upwards, not backwards and downwards. Take care x ... View more