Breast Cancer Now Forum

Hey Evie,   Just to let you know, the 4th surgery didn’t work for me. They actually found more news bits of DCIS which is concerning. I’m obviously gutted as you always want to hope for the best outcome. It was the right decision to try again as I will never wonder what if now.    Thank you for all all your advice and answering my questions on the immediate implant reconstruction, this is what I’m going to give a try. You’ve given me a greater understanding of what to expect which makes me feel confident I’ll get used to it and be able to move on with my life.   No surgery date as yet, not something I’m desperate to do. We have a few pre planned fun things so I’m not letting this ruin our plans. Thinking more like April.   I’m in direct contact with Stirts now. Hopefully your advice on radiotherapy will help her.   N x ... View more

Hi Evie,   Nice to hear from you.    I hope I get the same news as Stirts too but I really have to be realistic. At least I know I have the man who can! Crazy coincidence we have the same surgeon!   Been really researching implant reconstruction after a mastectomy as I think it will end up going this way. Your insight here has been very helpful and rather than going flat I am going to try the implant. The counselling has been helpful and I feel clearer in the decision making now.    You forget about logistics for treatment, what an added stress for you, a 2hr round trip each day would tire anyone out. Your friends and family sound amazing, what a brilliant and practical way to help. Really happy your side effects were manageable, hoping beyond hope this is the same for you Stirts. Evie-did the tiredness build up over time or was it instant? Did you feel it once the sessions had stopped? How long before you felt “normal” again?   Will be sure to let let you know the results, this time next week it will all be clear 😬   N x ... View more

Hey Stirts!   Yes, that does make sense. He told me the record attempt at Edinburgh was 7-not that helpful! I’ve always been amazed at how relatively easy the surgery process has been and pain free, I was expecting to be really debilitated by it. Lucky to have got such a great surgeon.I laughed when I read what you’d said to him and his reply-very funny!    Interesting about the pathology wait time, I was they were short staffed as a few of the team had retired. I’d have thought it would have been the same.   Enjoy your very well earned break, Pitlochry is gorgeous. Rest up and stock up those super strength reserves 💪🏻 👊🏻 . I read you can get run down, I’ve been taking Vitabiotics Immunace Extra strength and so far have been cold free since my diagnosis at the end of August.    Thinking about you lots too lovely 👯‍ ♀️ X ... View more

OMG Stirts - YES! Mr Barber is treating me at the Weston! We really are 👯‍ ♀️ ! I think he’s great, I love his manor and really trust him. Did you know he likes listening to heavy rock whilst operating?! Despite all the angst I quite often find myself laughing at his dry sense of humour. When I asked him if I’d done anything lifestyle wise to cause this he just leant forward in his chair and said “No, sometimes life’s a bit@h!”   The forum censored me on my shi@*ytittybangbang, I didn’t write “bleep” obviously! 😂 . Potty mouth! Glad you like that one, you’ve got to laugh haven’t you?!    We were meant to find find each other! Can’t believe it!    ❤️ 💪🏻 x     ... View more

Hi Stirts,   How are you? Hope you had a good weekend full of relaxation and fun things?   Your trip to the GP sounds really tough, so great you were brave enough to get help and brilliant you have a lovely supportive husband. Reaching out and admitting you need help mentally because of something you are going through physically is hard to do as it doesn’t feel natural, none of this does though. Sounds painfully similar to my GP fun trip out last week. I had to wait outside because of my anxiety and then was a snotty sobbing mess. I felt pathetic and that I should be able to cope with this, GP was great though and said 4 surgeries was not normal and was amazed I was at work.   Like you I don’t recognise who I am right now. Without wanting to sound like an idiot, I hold a senior job and in truth am always in control, if I want something I work for it, save for it or just outright ask. That’s why work feels like my safe space right now as it gives me confidence in myself and normality. This has really shaken me upside down. I feel so sorry for my poor husband living with an emotional wreck. He’s been amazing, a good test 2yrs into marriage. Thankful he can’t return me! Not sure if you watch Homeland, my cry face rivals Carrie’s but without the jazz right now. We do laugh though, mainly at grossly inappropriate things! I call my boob s*it tit right now and this period of my life will be known as **bleep**tytittybangbang. Not so sure it would make a jolly family musical though!   Diazepam sounds fun, I left the GP empty handed! Although I have a massive stash of the dihydracoedines now, they make me very sleepy. Was so desperate to get home ASAP last Monday I kept nodding off while trying to get dressed in the chair by the hospital bed and trying to hide it from the nurses so they would let me go. Forgot they gave me 2 after surgery, don’t like taking them because of the drowsiness. No pain so no need thankfully.   Radiotherapy definitely does not sound fun, you’ve come this far so will totally smash this too. In some twisted way all the surgeries have made you super resilient and able to take this all in your stride and by the sound of it with a smile as you know you on the home straight. That’s great news about no side effects to the Tamoxofin, really hope that’s still the case?   Waiting for results sucks, it’s 3 weeks in Edinburgh because the pathology department is short staffed. Boo.   👯‍ ♀️ X ... View more

Hi Evie,   Hope you had a good weekend? Technology not my strong point either, I think it would be easier if I were a robot, took me several attempts to work this out too!   Cat Meffan is really worth checking out. She’s a great teacher for being online and gives options. She’s amazing at yoga but doesn’t make you feel a looser if you aren’t! I find the breathing techniques she does on the tutorials helpful. The Yoga Nidra meditation is a great way to relax, I’ve found it very helpful. This sounds really hippy but I did one of her chakra meditations recently, you focus on different colours and then see if you can change, quite trippy but a brilliant way to totally distract the mind. I found meditation socially awkward before but now love it!   Also been googling boobs obsessively 😂 , got to keep clearing my search history as I only have a work phone and iPad! Think I’m pretty much decided on the implant reconstruction. Good intel on the R1/R2 creams too! Hopefully of use to Stirts. Really good to hear your skin was fine, that’s a big worry. Did you have any other side effects?   Big hug  X ... View more

Hi Stirts,    It’s like you are in my head Stirts and know everything I’m feeling! My tears were more out of relief at a fellow human understanding all this crap but also happiness that there is some hope as you’ve proved it can be done.   Like you, I’ve been an emotional wreck but physically in good shape - keep forgetting I had an operation on Monday and have been at work since Wednesday! Being at work keeps me sane and gives me a break from everything. Finding out the 3rd operation hadn’t worked was the biggest blow to date emotionally. Like you I’ve done a life time of crying in the past few months. I’m worried my face will stick permanently on “cry face” mode. I’m starting counselling next week, I’ve been told by my new GP that I have PTSD now so really need to address this. It mainly centres around how I was ignored and not taken seriously as it took 2yrs to diagnose despite numerous trips to various Drs. 4 surgeries has also done me in, the GP said this is not normal to go through that and completely understandable to struggle with it. Been an emotional week but I feel I’m moving forward and taking back more control.    What date do you start your radiotherapy? How are you feeling about that? Have you had the planning session yet?   Yours and Evie’s  messages have really helped this week, thank you. I’m certainly sprinting now to catch you up! Here’s to being warrior women 💪🏻 👊🏻 👯   Lots of super positive, cancery cell kicking badass vibes backatcha! 🦄 🌈 ❤️ X ... View more

Stirts!   I actually cried reading your message yesterday, it really seems like we are doppelgängers and have been living parallel lives recently. You are the only person I’ve found that’s had 4 attempts at this, although I’m not happy someone else has gone through this too, it is a relief to know I’m not alone and am not going mad. Not a fun club to be in is it?!   I love your hamster wheel analogy, you are spot on. I’ve felt like someone just dumped a huge rock in front of me since September and I keep flinging myself up those gladiator style travelaters to get over it only to nearly make it but be flung back down to the bottom. It’s complete ground hog day and very hard to stay functioning with the endless cycles of waiting for surgery, surgery, results on constant repeat. It’s exhausting. I had the exact conversation with my Husband about there being no ambiguity this time and I’m finally only going to have 2 outcomes this can now be. Neither option is appealing but still progress and a way to move on and get closer to getting rid of it. As my Consultant said to me early on, “sometimes life’s a bitch”. I have to have the view some people don’t get a choice or go through much worse.   I’ll be thinking of you during your radiotherapy and cheering you on - wish I was you right now! Sounds like they are going to give you a good zapping! Make sure you treat yourself. I can highly recommend  the Elemis cleansing balm for a spa at home style facial treat! I’ve read drinking lots of water helps flush toxins and promotes cell regeneration. I’ve found drinking coconut water particularly good after surgery as it flushes the drugs out really well although I’ve spent a fortune on it! I have one of the Joseph Joseph counter water bottles so I know I’ve drunk 3L/day. Also been reading about what to use to help the skin not burn, seems there is something out there called R1 and R2 gel which is good, aloe Vera gel too. The french skin brand La Roche Posey also has an oncology skin product section. I’m sure you’ll get good advice from the radiographers though.   This is tough but you are tougher. Keep in touch.   N x ... View more

Hi Evie,   Thanks for for your message, definitely happy I went for the 4th attempt. Now just got to play the horrible waiting game.....   Apologies, you did mention about your lymphodema risk. Great though that you are doing exercise at your pace. I can highly recommend Cat Meffan yoga tutorials on YouTube. They are free and you can concentrate on certain areas or do full body/gentle stretches. I’ve also found her guided meditations really helpful too, never been into that kind of stuff before but it’s certainly helped calm my head. The hospital staff are always so surprised at how chilled out I am before surgery! I’ve recently completed her “Yoganuary” programme where I did 31 days of yoga. Feeling very strong as a result.   I’ve been looking at breast reconstruction photos, got to be careful googling boobs! It’s good to get an idea but like you say it’s not a celebrity style boob job so I need to have realistic expectations.    Will definitely let let you know how it all goes. You look after yourself in the mean time.   N x ... View more

Hey Lotuslil,   Sorry to hear you are on the start of this journey. As someone recently diagnosed with Paget’s and high grade DCIS I can relate to how you are feeling.   Its important to realise that when you hear the words cancer, there are lots of different levels to this. Just because you have it does not mean necessarily you have the worst type. Most likely you will come through this and be able to live a very long and happy life once you’ve kicked the crap out of it.   I’d advise you to only speak to the experts that know so the people at the breast clinic, by speaking to the GPs before my proper diagnosis it only made my fear and anxiety worse as they kept telling me they didn’t know. Biopsy results (pleasant test isn’t it?!) usually take a week and then from when you have your MRI it’s another week. You should then be given a treatment plan. Be prepared this could change as they understand more about what is going on, the results from any tissue pathology results are more accurate than any MRI/Ultra Sound and Mammograms. I’m now onto my 4th surgery (which I had yesterday and apart from the dressing would be none the wiser this had happened as I’m in no pain), honestly having breast conserving surgery really isn’t as bad as you think. For me it’s no worse than the biopsies. I’ve been home within 4hrs each time and hardly had any pain and no healing complications thankfully so far.    Writing all your questions down, no matter how daft you think they are really helps. Being informed gives me confidence I’m in control of what’s happening. This might be something you aren’t ready for yet but I found listing all the things I was most scared of helped me as I could address them with my treatment team. Being confident in your treatment team is also important. My Consultant gets me and has exactly the right approach I need. If you aren’t happy, ask for someone else.   Telling people is tough, I liken it a bit to the politics of a wedding guest list only there is nothing to celebrate! This is personal to you and depends on what you think you need. Your parents will only want to support and love you. I probably have around 20 friends and family that know but as each surgery has failed so far, I have found it a little suffocating at times with people asking about the results and what’s happening. I felt like once I let people in on my not so happy news that I had a duty of care to keep them informed as they are lovely people who worry. I’ve only told my Husband and my best friend about my 4th surgery and to be honest am loving the silence it’s giving me as it’s what I need for now. Let the people know who can lift and support you up right now, no mood hovers or need to tell cousin Bob who lives in Australia who you only see every 10 years! Some of my family couldn’t understand I didn’t want to broadcast this so I had to be firm and coined the phrase, “My Tits, My Terms!”    Be kind to yourself, know that what you feel or need will change one day to the next, there will be tears but also there will be smiles and laughter. Wear your clothes you save for best, burn those expensive candles on a Tuesday, eat that cake and drink that wine. It’s tough but you are tougher. You got this.   NJS x ... View more

Hey Evie,   Sorry for the silence, had a lot to think over. I really appreciate your detailed response, really helpful.   I decided to go for the 4th re-excision yesterday as I didn’t feel I had anything to loose and it was another chance to keep my breast, albeit a very slim one. I’ve started counselling to prepare me mentally for this surgery not working and having a mastectomy though as I’ve got to be realistic.   My surgeon says the implant gives the least effective cosmetic result and works best when people have a double mastectomy. I still think I’m going to try this option as I’m reassured by your experience here, I’m happy to hear you chose the right option and it’s worked for you. I feel personally I’d prefer this to being flat. If I hate it I’d ask to take it out and go flat.   Random question - can you hold a yoga plank or could you if you tried?! I’ll definetly take your advice about going on the smaller side. I’ve got used to this because of all the tissue already taken away from my surgeries. Which prosthetis do you use, I’ve been reading about the knitted knockers! Have you tried them? www.kkukciowix.com   4th re-excision results will be back on 25th Feb, for now just playing that lovely waiting game! Will let you know how it goes!   NJS x ... View more

Hi Stirts,   That’s absolutely amazing news, congratulations! I decided to go for the 4th re-excision yesterday as I wasn’t ready to give up just yet. I know there is a very small chance of it working but today I feel very happy I’ve tried again and am pain free which is a bonus. It gives me hope to hear yours was successful. I spoke to my surgeon and asked him to take the maximum amount out possible before I’m left with a deformed boob. He did 2 shaves, he said he’d normally do 5mm but said he’d take it to 1cm. Even with the dressing on I can see I definitely have a decent amount of boob left. Hopefully it’s going to be a permanent fixture.   Are you starting radiotherapy soon? Genuinely so pleased that your surgery worked for you. Wishing you a speedy recovery and am sure you will kick ass on the next level just like you have at the surgery stage. Well done you for persevering!   NJS x ... View more

Hi Evie, Thanks so much for taking the time to reply and share your experience. Very happy to hear you have been able to move on and are recovered. A few questions if I may.....Was the implant operation tough to recover from? Did you have any complications? Can you feel it inside you? Apart from the symmetry (although not a small thing to gloss over) are you happy with this and your decision to get this form of reconstruction? It really helps to get an understanding of what to expect from a person who has had it. It’s all very routine for my Consultant but not to me as I’ve never been through this before! NJS x ... View more