Breast Cancer Now Forum

Little Noddy, I love your heartwarming response. You sound so confident and happy. So lovely for other people to hear about your positive experience. I too feel very much the same but am often reluctant to go on about it in case I come across as a know it all who has come through the other side. I am so grateful and happy and I do think it's important to highlight that it is possible to be so after a diagnosis as you have done.  Hope213, you will be well looked after tomorrow. Keep us posted about your recovery. ♥️ ... View more

Hi MayberryMagpie, It's so difficult isn't it when you don't know what to expect and how can we when we are thrown into this situation as we all are. Anyway, I hope my experience will help in some way. This coming August bank holiday will be the 5th anniversary of my single mastectomy due to a lobular cancer. Like you I was lucky enough to qualify for immediate reconstruction. I'd never had surgery before and I envisaged being in agony and immobile for weeks on end. I was terrified to say the least, especially about post-op complications and how it would all look and feel. I had a unilateral reconstruction on the right side (my dominant side). The operation itself only took a few hours and I was back on the ward eating dinner and texting friends five hours after going into surgery. I stayed in hospital two nights and was given excellent pain relief. I can honestly say I never experienced the agony I thought I would. I am sure it might be a little more challenging having both done at the same time but with help you should be able to manage. Two weeks after my op I attended our annual street party and nobody was any the wiser. As for the results, well I always say I'd rather have the original but I have been pleasantly surprised with the outcome. It takes a little while to get used to and I don't have much in the way of sensation, but I feel confident in all clothes and have no anxieties about "getting them out" in the changing rooms at the gym etc. I feel really lucky to have had such a good outcome and five years on am glad with the decision I made.  Hope this is helpful. Let us know how you get on. Ruth xx   ... View more

Hi Sarah, I think AmyC gives good advice and it's definitely worth exploring your options. I had my treatment at Guy's and it's true that lots of their resources are shared with Kings, and other London hospitals, meaning you have access to lots of different experts, trials and other things like support groups and even the workshops that Breast Cancer Now runs (it was Breast Cancer Care during my treatment). One thing I would say is that although Sutton is not that far away, once you get into the treatment programme, the appointments can often start coming thick and fast, especially if you have radiotherapy which can be every day for three weeks or longer. Maybe you might want to consider factoring in extra travel versus having an alternative close by. Especially in the current situation with Covid if there is the need to use public transport.  Personally I am somewhat biased about Kings as I've always had excellent experiences there and indeed, back in 2007, a wonderful (non-Cancer) team saved my husband's life. It is a top class facility I've always really appreciated having on my doorstep. We are so lucky in this part of the country to have so many great facilities at hand. Anyway, that's my two penneth. Keep us posted with how you get on. Lots of fantastic support on this site that really helped me through my treatment. It all seems hugely daunting at this early stage but it will get easier as your treatment plan starts to fall into place. Take care Ruth     ... View more

Hi there. So sorry you are going through this. This decision-making period can be awfully stressful and having to make such a choice without much time to weigh up the pros and cons is one of the things I found most difficult. This coming Tuesday 21st will be the fifth anniversary of my lobular diagnosis. I had the same choices as you although they were pretty sure at the time that I'd not need radiotherapy. I had never had surgery before and was terrified which helped my decision somewhat to go with an implant with a acellular dermal matrix sling. My surgeon was very encouraging that this was a good option for my modest B cup. I had my reconstruction at the same time as my mastectomy so was lucky to get it all over in one operation and wake up with something there which I really believe helped me come to terms with everything that had happened more speedily. My recovery was far quicker than I anticipated as well and made me a lot less anxious about any further surgery should it be necessary.  I've not had any problems with the reconstruction which will be five years old next month. It's not uncomfortable and it looks pretty natural. I have no concerns about getting it out in communal changing rooms for example. There is however very little feeling left which is the only downside.  Although you obviously would prefer to avoid multiple surgeries, keep in mind that if you opt for implant recon and find you don't like it or it fails further down the line then there is always the option to go for an own tissue reconstruction at a later date. And in a few years there might be even more options available.  Good luck with you decision. You will get through this. Keep in touch and let us know how things go for you. It's a great supportive community here. Ruth x         ... View more

Hi Sarah,  One of the benefits of having the lift done at the same time is that cosmetic ops are obviously seen as less urgent when the surgeons need to deal with immediate cancer treatment. You might find yourself on a waiting list then get bumped if more urgent cases need the surgery time if you leave it until later. Not a decision I had to make but just what I heard from others going through treatment. Good luck with the decision. Xx   ... View more

Hi Stephie,  Next month will see the 5th anniversary of me being diagnosed with lobular. While I can't say that thoughts of recurrence don't enter my mind from time to time they do start to ease the further away you get from the experience. I no longer think every ache is recurrence but accept it's likely just I am getting older 😉 .  The best piece of advice I was given and strongly believe is that our wonderful but cash-strapped NHS would not put us through the expensive treatments if they didn't think we had a good chance of lots more years of life.  You are going through the worst bit now when your emotions are battered and it all seems overwhelming. But it does get better. Keep us posted with progress. Lots of lovely people here to support you.  Xx ... View more

Hi again. I didn't have to have radio in the end although the team did dither about whether I should for a while. I truly believe that my mental recovery was helped by having immediate reconstruction although I know how lucky I have been. Hope you settle on your decision soon. Once treatment gets underway you can start counting off the time and looking forward to nice things again.  Keep us posted on your progress. Xx ... View more

Hi there. My surgery was 4.5 years ago, an implant with an ADM matrix sling. While I would always say I would rather have my original boob back, I have not regretted my decision yet. Really pleased with the aesthetic result (although no feeling has returned). I believe implants work well if you are a modest cup size.    Yes, more surgery may be required in the future but who knows what advances there will be between now and then. Also, if you have an implant now you will still have the option of an own tissue donation at a later stage if necessary.    Good luck with your decision and feel free to ask me more questions.    Xx ... View more

I can't really add much more to the excellent advice given by Sue but would certainly back up her comments about trusting your medical team to find the best regime for you and eating sensibly and healthily. I had chemo in 2015/6 and made sure I ate a really healthy diet throughout. I coped pretty well with few problems and I would do it again if I had to.   The NHS would not invest so many resources into trying to treat us all if the likely outcome was not good.    Stick around this forum for excellent support and advice. The helpline is very helpful if you want to speak to a professional not related to your treatment team.   Sending you best wishes.   Ruth xx ... View more

Hi Ash,    So sorry you have had to join the forum but you've come to a great place for support and to discover that what you are going through is pretty normal.   I was like you at the start and thought it would just be surgery and rads but after discovering I had one node involved and was still "young" according to my medical team (I was 51 at the time) chemo was suggested to me too. It's terrifying at first but it really wasn't such a dreadful experience. Chemo was in no way as horrific as I imagined it would be. I was never sick, just tired at certain points and I had the odd irritating issue like a brief dose of folliculitis on my back when my hair started to fall out (honestly, I never realised my back was hairy  ) but that was cleared up in a few days with antibiotics. The drugs these days to help counteract the side effects are very effective with dealing with the worst of it all.   Losing your hair is devastating to some but it wasn't the hardest part for me. I realise now how much better I look with shorter hair and I'm weirdly grateful to have been forced into trying something new.   I'm just coming up to my four year anniversary of diagnosis. When I look back at where I was this time in 2015 I would never of imagined then how happy and healthy I'd feel now. The truth is I appreciate my life so much more and find something to enjoy every day.    You will get through this. You are young and have so much life ahead of you that this is just a blip on your journey. And just because you are having treatment doesn't mean you can't enjoy life. I went to a wedding, the cinema, theatre and out for meals regularly during treatment. Maybe there will be days when you need to slow down but life does not have to stop.   I hope this is helpful and that you stick around on this forum because there are so many lovely people here who will always be around to support you.   Let us know how you get on.   Ruth ... View more

Gosh your chemo nurse sounds rather overdramatic and not very encouraging. Yes it's fine to point out the potential side effects but to say you are likely to be unable to use the loo without help is bonkers. Unless you have other serious health issues that is so totally untrue. I though I would spend all my time with my head down the loo but was not sick once during chemo. The anti sickness drugs you get as part of the regime are very efficient in most cases. Tiredness is a factor but not all the time. I worked part time from home two weeks each cycle and was very glad of the distraction. Don't worry unduly and try not to let other people frighten you. Xxxx ... View more

Hello Clare, I wasn't HER2+ but I've met several people while going through treatment who are. In fact, about two years ago, I met a lovely women who was one of the first people to have Herceptin in the UK 12+ years ago. She had never had a recurrence in all that time and was the absolute life and soul of the event I was at. Herceptin is considered the gold standard drug for HER2+ breast cancer and the outcomes from treatment are extremely postive. You are in good hands. Ruth xx ... View more

Hi Jill, Sorry for taking so long to respond. I'm doing fine although real life has taken over this last year, which is  good thing I guess but has given me less time to spend here. I do know that you have had a very challenging time lately, to put it mildly. I'm so sorry about that and hope 2019 gives you some respite on that front. Happy new year and hope to catch up more this year.  Take care. Ruth   ... View more

Hello Val, so sorry you have had to join the forum, especially at this time of year when the waiting is likely to take a bit longer because of the holidays etc. This really is the worst time when you are waiting for results and want to know the whole picture. At this stage we all feel/felt helpless and distressed and I'm sure lots of other people here will come along and back me up on that.    Initially there is a lot of waiting around for the full story but once your team know the full picture and share it with you things will get easier. The vast majority of people who have BC will have sucessful treatment and go on with their lives. This period you are living through now really is the pits but you will get through it.    This time three years ago I was half way through chemo, facing Christmas with no hair and worrying I would feel too sick to enjoy it. I actually enjoyed that Christmas and I enjoy life now more than ever.    Do you have a date for chemo to start? Really don't fret about it too much. For the vast majority of people it's a lot less traumatic than you would imagine.    You will get lots of good advice and friendly banter here so stick around.   Ruth xxxx ... View more

Hi Nanna. You will probably surprise yourself with what you can do throughout treatment. We are all different of course but I found chemo pretty doable most of the time. Before starting I thought I would have my head down the loo for 18 weeks which was not the case at all. Like Mai I also lost a little weight. I went to one wedding during chemo, had several nights out with the girls, went to theatre and cinema. One thing BC taught me is that it's no use waiting for situations to be perfect to do things, just do them. Your daughter will be so happy to have you their that nothing else will matter. Good luck with the outfit shopping. Ruth. Xx ... View more

Hi Simmi. Very good advice from Jo. I would only add that much of the research available for free online is likely to be a number of years old and there are new developments in treatments all the time so it's likely you are not accessing the most up to date data. I am now almost three years out of treatment and although didn't have your diagnosis I did go through chemo with several people who did. They are all still well and thriving. I met a woman last year who was one of the very first in the UK to have Herceptin and 11 years later was the life and soul of the event I was at. It's a scary time but sounds like your team have put a great treatment plan in place for you. Ruth xx ... View more

Hi Jules. I was lobular too. Originally thought to be 2cm but ended up as 4. Discovered dimpling and then a lump 8 months after my first all clear mammogram. As the others have said it is far less detectable than ductal and although the tumor may sound big it's often tentacle-like rather than a solid lump so covers a larger area of the breast. As you are discovering it makes the treatment path more drawn out which can be challenging and upsetting. I am now almost three years on from active treatment and feeling good. You will get there. Stick around here as there are plenty of women who have gone through similar experiences and will be happy to give support. Look after yourself. Xx ... View more

Hi Rapunzel (great forum name btw). I was the same as you. I'd never had surgery before and was utterly terrified of it all. I got myself in such a state that I became convinced that I would not be reunited with my glasses after surgery and this became a major worry. Everything was fine for the two lots of surgery I had (mastectomy and immediate reconstruction which involved a two night stay in hospital and post-chemo I had full node clearance). Both times I was amazed at how easy it was. The anaestheists that looked after me both times were all lovely. They are so good at putting you at your ease. One minute I was ranting about government cuts to the NHS with them then the next I was waking up in the recovery room. So much less traumatic than I expected.  It's a horrible time you are at now but you will get through it and life will be good again. Let us know how you get on. Ruth xx ... View more

Hi Cristina, So sorry you have to join this forum but you will get some fantastic support here from a wonderful group of people who are going through treatment and also those who have come out the other side. I am in the latter group, just coming up to my three-year diagnosis anniversary. This time three years ago I was in your shoes, thinking that my life was at an end or seriously diminished. I never thought I would be happy again. But I am and you will be too.    You mention being a wimp about your body and worrying about treatment. I was exactly the same when starting out. I had never had surgery before and was terrified of pretty much everything (I became obsssed with the worry that I would not be reunited with my glasses after surgery which didn't happen as the lovely nurse practically put them back on the minute I came around). In my experience (surgery x 2 and chemo) the treatment was nowhere near as awful as I had anticipated. Once I knew what the treatment plan was I felt able to make plans to deal with it and move forward.    The one thing that comforted me throughout my treatment was that there is no way that our wonderful, but terribly cash-strapped NHS, would consider treating us if they didn't think there was a good chance of a positive outcome for us.    We hope that you will stay with us and let us know how you get on tomorrow and in the future.    Un abrazo muy fuerte. Ruth xx ... View more

Hi Jollyrancher. Excellent advice from people below which I would strongly support. I am just coming up to my third year diagnosis anniversary and 2.5 years in from finishing chemo. I had a node affected and a 4cm lobular tumour. I can honestly say I have never felt better in my life both physically and emotionally. Chemo is a tried and tested treatment and side effects can be managed efficiently. There are a lot of people out there trying to make a fast buck out of "alternative" treatments and can be very persuasive with their arguements, especially when you are feeling vulnerable. Listen to your treatment team and you will be fine. Ruth xx ... View more