Breast Cancer Now Forum

Hi Sharon, Thanks ever so much for your reply. I'm finding it so helpful to read about other people's experiences of this sort of decsion. I know my situation ....is just that - my situation. But knowing my thoughts, fear and feelings are familiar to others, is a sort of comfort. It feels like a small concern when compared with enormity of your situation Sharon! I just can't imagine how traumatic your situation was and is for you. I'm very fortunate that at present I'm only dealing with surgery to one breast. How disappointing for you to still feel so much discomfort after all that surgical pain. You probably feel very frustrated by it, as I am. I was offered fat transfer to build the entire breast, but have declined that option as I don't think I could tolerate so many ops - my surgeon estimated 8 - 10 would be needed to build my shape enough. He was doubtful I'd cope well with the pain either baring in mind the chronic pain syndrome I already have. I feel a great need to close the door on all the surgery and really want to just have just the one op to do this. I've enough on my plate already to deal with. It's interesting that you mentioned you get so much pain! Do you think it is nerve pain?... like I described above or muscular / anxiety related? I've not spoken to anyone else who's experienced chronic nerve pain related to their breast surgery. It sounds pretty similar to how I describe mine. I was doing yoga at my local Maggie's Centre every week but I found that I was in terrible pain the following day and sometimes up to the next session! I've since taken up Taichi instead. It's marvelous for getting gentle exercise and toning. I've not experienced additional pain as a result of stretching, since that point which is a huge relief. I totally know what you mean about having a melon, by the way!! I'm very sorry to read that you are having gynae surgery next week too.... on top of you double mastectomy. I really hope it goes smoothly and safely. I hope that your recovery will be speedy and that your future health is stable. Thank you so much for sharing your story with me. You've been a great help to me. xx ... View more

Good evening Carol Ann, Thank you so much for sharing your experience with me. It sounds a very similar problem in many ways. Especially as you have had significant complications along the way and physical difficulties too. The decision to have the implant removed and go flat chested on one side, is a very difficult one. For me it will probably be permanent as major surgery isn't considered an option due to the stroke and other blood clots. We still don't know for certain that the stroke was caused by the hole in my heart. If it was, then repairing the hole should theoretically prevent another stroke. It would also mean that reconstruction surgery might then be a safe enough option. But, if the hole is found to be too small for a clot to have travelled through, this would make my situation even more complicated as the cause would remain unknown. I think therefore I need to focus on what I do know and learn to accept and adjust to the idea of removing the TE and what that will mean phychologically and pysically to me. Hearing the way others have got through this transition is a great help! I'm sorry to hear about your struggle and current circumastances and I wish you well with you TE removal. I hope you find it a relatively easy adjustment and that it improves your quality of life. Thanks Carol Ann for your interest and support. Rebecca xx ... View more

Thank you Jo (facilitator) for helping to promote my request for help. XX ... View more

Hi Nicky, I'm in Nottinghamshire too. Nice to see someone else on here from the local area! I'm interested in meeting up or having get - togethers. I've done quite a bit of fundraising too over the past year or two and may be interested on a relatively small scale. Private message me if you are still looking into either. You can read more about my situation on my profile page. Bye for now Rebecca ... View more

Thank you so much everyone for responding to my ask for help. And so promptly too. It's reassuring to hear others understand the frustration I feel and the difficult decision I have. I know it's highly unlikely that I'll meet someone who've experienced a parallell situation as it's been so complicated, but finding people who've been through similar experiences is a great help and comfort! Hi Tracy, Thank you so much for responding to my message and for sharing your experience with me. It was a lovdely message and I really appreciate your taking time to help me. I had a similar feeling when I came round from anaesthetic after the mastectomy / T.E. implant. I hated the thing initially. It was so hard and alien. I could feel it all the time and it would move around under the skin if I exerted myself or put strain on the shoulder or chest muscles. Once it settled I got used to it on the whole, though I've never liked the feeling, If it weren't for the pain I now get, I think I could possibly just remain as I am - with the current temporary implant, permanently. I hate the way the area feels, but I don't have an issue with touching, holding or using a prosthesis. But nothing is never that simple, it seems. The pain is awful when I get a bad day. I can't do anything. I stay home and hold a heat pack to my chest area and take additional pain relief. I hope your health is good now. Thank you for your positivity. XX Hi Jo-Jo, WOW, your situation sounds very similar to mine. Thank you so much for sharing that with me!! My T.E. was also a last minute decision - not by me, but the surgeon a couple of days before my op. Poor communication in the team meant no one had informed one another of my stroke. My husband asked as we were leaving my pre - op appointment, which day I should stop taking my anti - coagulant medication (so I wouldn't haemorage during the op!) She was totally unaware until that point and was planning to perform an LD Back Flap to create the new breast whilst removing the tumour. She couldn't do such a major op though, whilst I was on the stroke medication or whilst there was a risk of other stroke or other blood clots. So, she had no choice but to give me a T.E. Had she just said I can't do any recon at all...... you will have a flat chest when you wake up and it will be permanent, I would have accepted it more easily I suspect. My situation is still similar, in that I'm still can't have recon surgery due to blood clotting and stroke history. Asking to have it removed was a brave decision........ I'm so scared to ask for surgery!! Was your pain tension related? Or nerve pain: shooting, stabbing, pin - pricking, burning, stinging sensations? I'm curious. I'm so hoping that removal will improve this sensation for me. How long did it take you to recover from the op? I think I shall probably find more questions for you Jo-Jo. I hope that's OK? Thank you so much for your support. It's been very valuable! I hope you are adjusting well to your 'new you' and that your future health is good. Many thanks XX Good morning Rattles, Thank you very much in sharing your story too. What a dreadful experience for you. I'm so sorry to hear that. To much emotionally and physically to deal with accept. I truely hope that things are more settled for you now, health - wise. I imagine I will feel a similar sence of uneasiness, incompleteness and asymertry following the removal of my T.E. How long was your recovery time? You have made some very good points and I agree, time is possibly what I need.... I agree. I unfortunately feel I need to made a decision too, in order to move forward and organise my future. Getting back to some form of job, is on my mind.... Not because I am burning to do so. But because I feel a lot of guilt and don't want to lose my current links with an old job. Which I fear will be cut by them very soon. It scares me because it's one of the few jobs I believe I could actually do and want to do right now, that brings in reasonable money when I'm working. It's me putting pressure on me and I'm aware of that most of the time. Thank you Rattles for your time. It's been a great help reading about your experience! XX Hello Saffronseed, Thank you for finding a moment to reply to my ask for help. I've not heard of the Peer Support 1:to:1 option on here. I will definitely look into that idea. Thank you so much!! Hope your health is good and you are having a good day Saffronseed. XX Hi Anna, Thank you for your links. I have used the phone support service a couple of times in the past and was a regular on Thursdays to the group support.... up until I lost a good friend due to breast cancer. I met her through this website and chatted every Thursday in the group. Wasn't the same without her. But I would consider joining in again. It's about 9 months since she died now and time I thought about using it again perhaps. I will look into the peer support options some more. Thank you Anna. Hope you are having a good day. XX ... View more

Hi again everyone, Sorry it's been a while. I sent my application form for Leeds off and have been accepted onto it too. I'm sure I put a message on here, but just noticed it's not there?? Anyway, I'm travelling from Nottingham. There isn't a nearer one for me. Anyone else from Nottingham? ... View more

Hi Brook Top, I've sent you a personal message regarding this query. ... View more

Hi everyone, I don't know if any of you are still likely to read this topic as the messages are a few months old, but I thought it was wortha go. It's nice to see there are a few people on this site who also attend Nottingham City Hospital. I was diagnosed last October, so coming up to a year now since I found the tumour. The Breast Institute is excellent. I feel in very safe hands there. And I can't wait for the new Maggie's Centre to open! It'll be before Christmas this year I'm told. They are already working on the interior. Does anyone go to the Breast Cancer Support Group that's held in the BI on the 3rd Tuesday of each month? I've been a few times and hope to go to the next one. It'd be nice to get to know a few more women there, especially any of my sort of age. I'm 39 years old. ... View more

Hi everyone, Sorry I've not replied to the latest messages. I'm afraid my pc got a virus for a while and needed cleaning / fixing, then I had a PICC Line fitted which lead to extra complications: extensive bleeding and an serious infection. So been in and out of hospital for the past month or so. I wondered if anyone has sought support aids for around their home, to make daily activities easier. By this I mean requesting: A bath seat / bath chair Devices to turn jar lids.... Something to enable me to scratch my back!! Has anyone on here tried? Any success? Who did you ask? I'm thinking of asking my BCN. Thanks. PS Has anyone on here also had a PICC Line fitted? If so, did you get a cover for it to keep it waterproof or were you also just told to cover it with cling film, as I was for the purpose of showering etc...! I'm still trying to do a little walking regularly, but also want to join an aqua aerobics group to combat my awful weight gain since diagnosis. I plan to join a group for older ladies, so it's not so demanding on my joints, but I mustn't get the line wet. I will ask again tomorrow when i go to the hospital to have the line flushed, but if no joy here, must I buy one? Any thoughts? ... View more

Hiya, I thoughts I'd just update all of you who so very kindly send me your thoughts and best wishes re: the PICC Line op. Sorry it's a very late reply, but unfortunately for me, things didn't quite go to plan! The op to fit the PICC Line was 3 1/2 weeks ago. It went fine - much as you said on here, I felt only the prick of the needle to numb my arm. It was done in theatre under a local anaesthetic (injection into the elbow area), and I went home a few hours later that day. I had herceptin treatment using it the same day too. However, due to anti - coagulant meds that I need to take (Enoxaparin / Clexane and Clopidogeral), the bleeding just wouldn't stop! I was rushed back to hospital in the evening and admitted on to the Emergency Admission Unit for 24 hours. It actually bled for 5 days in total and restarted several times after this, for shorter periods. It seems I was right to have some concerns prior, regarding this possibility. Then, when finally the bleeding had stopped, I got a serious, rapid spreading infection at the insistion point. I was on holiday at the time and had to return early and visited the hospital asap. The doctor wanted it removing immediately, but with a good deal of persuasion she agreed I could keep in over the weekend, to see if the anti - biotics she'd prescribed would help. I have just completed a very heavy duty course of anti - biotics (1000mg X4 daily, for 7 days) and thankfully I have managed to keep the line. Things may not have gone smoothly - like everything else for me at the moment, but I'm still really glad I had it put in. For anyone else out there who may be wondering if it's worth it - it probably is! Having herceptin and blood taken is a doddle now in comparison. I wish I'd heard of it during chemo!! The only thing i've learnt is that in hind - sight, I think the idea of me remaining on both of high doses of anti - coagulants, was perhaps not so wise an idea. But having one fitted has meant treatment is now completely painless and I'm so much less anxious as a result. Thank you everyone who helped me through this!! ... View more

Hi everyone, It's nice to find so many friendly people on here. I'm also booked onto the Leeds 2 day forum in January. I'm in Nottingham and was diagnosed in October last year - coming up to the first anniversary of finding my lump in fact! I was diagnosed when I was 38. I'm now 39am married but have no children. I've had the following: Chemo Therapy, then mastectomy with tissue expander and delayed recon, then Radio Therapy and am now on Hormone Therapy x3 and have a PICC Line. I've had a lot of serious additional complications too since diagnosis. I'm looking forward to the forum, but am already feeling quite anxious and emotional about going and meeting people. It's good to hear others are nervous too. I know we'll all get a lot out of the event and maybe even make some new friends in the process. I'd be glad to meet up with others on the day as well, to save doing it alone. Just let me know. Rebecca x ... View more

Hello Bev and Manxcat, Thanks so much for your responces. I'm really nervous about the idea of having it, but I can see how it may be of benefit too. The way I see it, if I'm getting so much anxiety, pain and discomfort already, how I am going to cope with having treatment in 2 months or 6 months... time! I think I'll have to have a line sooner or later anyway, so why not take control of the situation and do it early on and make the whole experience less traumatic? Reading your experiences has been a real help to me. Thank you so much for taking the time to write a reply to me. Manxcat, I've not heard of Cavilon. What does it do? How is meant to help? I ask because I experience skin sensitivity too and wonder if this is something worth asking about at some point. I get allergic reactions to micropore tape and dressings on my arm when left in contact for more than about 10 minutes - particularly on my arms and have sensitivity to pain all over. What type of sensitivity do you experience? Many thanks for your help. I hope treatment is well for both of you. Meg x ... View more

Hi Africa, Thank you for your message in relation to joint pain. I'm really sorry I haven't acknowledged it before now, but was unaware of the reply until i logged in just now. Thought I'd have had an e.mail to tell me it was there, but I don't remember receiving one. I'm sorry to hear you are struggling too. Like you, when it comes to medcation, I've found nothing works to relieve the pain properly, but I have now found a few things that help me and can reduce discomfort: 1)Regular gentle excercise such as walking on the flat - but not any exercise where I have to bend my knee into a right - angle, (if this makes any sense!) Bending it this much is too physical and generally hurts me too much. I've been gradually building this up from just 5 minutes after surgery (up and down our road), to walking up to 2 hours (with a 5 minute rest every 20 minutes). I still avoid inclines and steps though and can't manage long walks very often. I find it easy to over do it without realising it and often regret having walked so far on those days, but I'm learning to recognise the signs when I'm approaching my limit. 2)Ibuprofen in the morning helps a little if I'm really struggling. It's more effective than paracetamol as it's an anti - inflamatory as well as being a 'pain killer'. This has been suggested by all the doctors I've seen so far, who are aware of it. 3) Most effective of all is a warm wheat bag / hot water bottle / my reusable Theraflex 'elastic gel' heat / ice pack, which hospitals use. They can be ordered very cheaply over the internet from several websites. I find the Theraflex pack my prefered option as it's quick to warm in the microwave or boiling water and holds heat a long time without it being too hot initially. 4) Hand massage works wonderfully - obviously when done by someone else! I had the wonderfully treat of a scalp, neck, shoulder and hand massage the other day and I felt wonderful after it. So wish I could get that on the NHS. Unfortunately it was a one - off present as it cost £36 for 35 mins! I checked with my Oncologist and they were happy for me to have massage in areas where I'd be given a cancer 'all clear' and told the use of aromatherapy oils would not interact with my health / meds - although I know this unfortunately isn't the case with everyone. 5) Finally, I'm taking Evening Primrose Oil Capsules at the maximum daily dose possible(6000mg p/d / x6 1000mg capsules), following consultation with my Oncologist and Breast Care Nurse. I'm told they don't help everybody with joint pain, but some women find it improves the discomfort, so I'm having a try. I'm told it'll be at least 3 months before I notice any benefit, if it works at all though. If you want to try this too, just check it out first with your consultant... as with all meds, these can react badly with some people / some other meds. I'd be very interested to hear if you find the reflexology helps in any way. I hope your treatment is going well for you. Meg x ... View more

Hi Lou, Thanks so much for your reply. It sounds like you experience similar problems. It's good to hear from someone who can understand what this is like! Thank you for sharing your situation with me. I look like I've got arthritis, especially in the mornings. I forgot to add to the message I wrote, that I've also been tested for arthritis too, but that the results came back negative so I know that's not the cause either. As I mentioned before, my Oncologist says it's probably chemo related, but that it's very unusual for someone to experience so much pain and stiffness as a result of it. I used to be fairly fit and active, so it's very draining and frustrating. Have you found anything helps to aleviate the discomfort - I'm thinking complimentary therapies, massage, a warm bath? I'm still taking morphine for pain relief due to the op recently, but it's not really doing much to help my joints. I spoke to a nurse on the Cancer Care helpline about it and she advised I request a referral to the pain clinic for a new assessment as morphine may not be the best medication for this type of pain, but I would really like to know if I can do anything else to help keep me mobile. Thanks for your time. I hope your treatment is going well for you. Meg ... View more