Breast Cancer Care Forum

Hi NJS I think you are being really sensible and preparing yourself for a mastectomy, if it happens you are ready and if not then yippee! Stirts and I will be right there with you on the 25th holding your hand. Make sure you have lots of lovely distractions this week while you wait.    Hmm, I’m trying to remember back about the tiredness. I started with chemo, then had mastectomy and radiotherapy last - so I think the tiredness started with chemo and just kept going until after the radiotherapy had finished. I did have to rest after my 2 hour marathon trips each day to radio, but I seem to think I got my energy back relatively quickly afterwards. I had to be sensible and not overdo it, but I started walking more and then the gym and it built up quickly. At the risk of stating the obvious, be guided by your body. The effects of radio keep going for a few weeks afterwards too (like how sunburn creeps up on you overnight when you didn’t think you had sat out too long in the sun), so it’s important to keep moisturising and drinking lots of water when radio finishes.    Do you have far to travel to the hospital where you will have radio? Do accept or even ask for lifts from friends/family, even if it’s close by. It’s a lovely support. I really was so touched when one friend organised the rota for me.   Big hugs Evie xx ... View more

Hi NJS and Stirts What a coincidence that you both have the same great surgeon - NJS, I so hope that you will get the same news Stirts did.   I’ll leave the two of you to chat (although very happy to answer any questions either of you have), but I wanted to come back to you NJS on radiotherapy. The only real side effect I had was tiredness, but a lot of that was having to go to the hospital every day - the best part of an hour each way for a 10 min appt. Luckily my friends and family organised a rota to drive me up there each day, that really helped. I think the main things are to rest, drink plenty and keep moisturising. I wish you both all the best for the next stage and please do ask me anything. I will keep watch for NJS’s results on 25th. Evie xx ... View more

Hi NJS - I have done it again and typed a reply and it vanished, I’ve realised that I keep forgetting to hit the “I’m not a robot” button. So here goes again! I think it’s a new button or maybe it’s just on my iPad? (Technology not my strong point). Please don’t apologise for the lymphoedema point, you have so much info coming at you from all directions that you can’t possibly retain it all. Thanks very much for the Cat Meffen yoga tutorial tip, I’ll definitely look into that. I’ve found that mindfulness has really helped me through all this. Your comment about googling boobs made me laugh - I had typed something about that in my earlier message but had forgotten to retype it. You end up doing things you have never done in your life before 🤣!   I saw that you mentioned radiotherapy and the creams. I used R2 but R1 was out of stock everywhere when I had radio and my skin was fine throughout. I also used aloe vera from Holland and Barrett. Some hospitals are fussy about what you use, but it must be ok if some allow it. Many GPs and oncologists don’t seem to have come across R1 and R2 cream and I believe it’s quite expensive so you might have to fight to get it, from what I have heard and read. Sending hugs to you. Xx ... View more

Hi NJS I typed you a long reply this morning but it has vanished - maybe I forgot to hit send 😂 ! So I’ll try to remember what I said..... I’m really glad you went for the 4th re excision. It sounds hopeful from the amount that they shaved and from Stirts’ experience - Stirts, I’m so pleased to read that yours was successful. I think Stirts makes a good point that the surgeon wouldn’t put you through a 4th if there wasn’t a chance that it would succeed. Good too that you are preparing yourself in case you have to have a mastectomy. Do also google some plastic surgeons’ sites and see some photos of breast reconstructions so you have an idea of what they look like - I know mine has photos on his website. To answer your questions - no I haven’t tried Knitted Knockers, but I should do as I have heard very good things about them. I was given my prosthesis (a plastic/silicone one) by the BCNs at the hospital. I don’t like the material as it makes me hot/sweaty - so I really should do some research and find something better. That said it does give a good shape. And re the yoga plank - I am in a slightly different position to you as I also had node clearance and as such am at risk of lymphoedema. My surgeon told me not to lift heavy things with that arm, and don’t do weight bearing exercises like the plank (I can use weights sensibly, just not my whole body weight). I believe the risk is far lower with a mastectomy only - but it would be a question to check. Also different surgeons have different opinions about what is safe and what isn’t. I have just started doing yoga so I do the exercises I feel comfortable with. I will have everything crossed for you for a positive result on the 25th - do come back and let us know. And Stirts - all the best to you for radiotherapy in March. Evie xx   ... View more

Delly, that was a lovely helpful post, for SoniaC and to all those with similar anxieties. Thanks for staying on this forum to support others. SoniaC - I hope you have managed to speak to someone to reassure you. I have often turned up at appointments armed with the latest research found in a newspaper article, only for my consultant to dismiss it as only giving part of the story or being outdated. Journalists often seize a headline and don’t always give the full or accurate picture. I was told to stop reading newspapers!! Sending you a big hug. Evie xx ... View more

I think it’s worse now than at diagnosis because we know all about it and the procedures etc - if you were like me it was all a bit of a blur at diagnosis and you were put on the treatment treadmill without any time to think or google. Do visit your GP to get something to help you sleep - your GP may even be able to reassure you. Please do continue to message me, on here or privately if you prefer, if that helps. I sooooo understand where you are coming from. While I was having chemo a friend sent me a coaster with the following message from Winnie the Pooh “You are braver than you believe, stronger than you seem, and smarter than you think”. Big hugs, Evie xx ... View more

Hi NJS I’m very happy to answer as many questions as I can - as you say our consultants do this every day and don’t really understand our questions. I was told that my particular implant operation has the same recovery time as a mastectomy without reconstruction. I also had nodes removed at the time so that probably extended my recovery time. I’m trying to think back.....recovery at first always seems slow, but then before you know it you are back doing all those normal things again. I think I was back driving about 3-4 weeks after my operation. I started going for walks as soon as I could after the op and those quickly increased in distance. I would have been cleared for the gym a lot sooner but I delayed starting that again as I was having radiotherapy (that was a personal decision rather than a medical one). I really don’t notice my implant now, it was tight to start with. It’s odd at first because you don’t have any feeling in it. I’ll try to describe it a bit.....so it’s much more round than my left (“real” one), think of celebrities who have boob jobs (mine is a lot lot smaller though). I think a smaller implant would have made them more symmetrical. I could have further surgery, but I’m not inclined to so I use a prosthesis over my left breast to even things up. Ask your surgeon if he/she has photos of operations they have done so you can see - that’s something I wish I had asked at the time but didn’t think of doing so. As I had nodes removed I am at risk of lymphoedema, but I think the risk with a mastectomy only is far far lower - maybe a question to ask your consultant. I have to take sensible precautions to try to limit my risk. Recon is a very personal decision, many ladies choose to stay flat, and it is important to others to achieve the best possible symmetry so they go for the tissue options. I chose immediate recon because I wasn’t sure how I would cope mentally with one side flat, and I chose an implant because I wanted the shortest operation and recovery time. For me it was the right decision and I would do it again - except I’d have a smaller implant! I hope that helps a bit, but please feel free to ask me as many questions as you like. Evie xx ... View more

Angiebobs - a big supportive hug from me too. Anyone who has had BC will totally understand the fear you are going through. Every minute seems eternal. As Helena says, the pain could well be caused by all kinds of things, including horse riding but the mind goes into overdrive doesn’t it. When I have similar fears I have been told to treat myself to doing my favourite things, taking one day or even minute at a time and not looking ahead. It’s easier said than done of course. Keep chatting on here if that helps. Evie xx ... View more

Hi NJS First of all welcome to this lovely forum, where I know you will find support and help in making this tough decision. I’ll give you my story in case it helps. I had IDC, some DCIS and node involvement - I also have small boobs so I didn’t have the option of a lumpectomy and had a mx in 2017 and I had an immediate recon. I’m also fairly small and scared of big ops so wanted a recon but couldn’t face the tissue ones. My surgeon did a “pre pectoral” implant (on top of the muscle) and wrapped in a Braxon sling (google if you’d like more details) because it was a simpler operation, supposed to be less risky if having radiotherapy after and good if you are sporty. I think those were some of the reasons, it was all a bit of a blur at the time! My boobs aren’t symmetrical but I have got used to my “new normal” and just glad to be rid of the tumours. Please feel free to ask any more questions if I can help in your decision making. Sending you big hugs. Evie xx ... View more

Hi Bella Vista What type of recon did you have? And when? I had an implant and my implant is a lot bigger than my left. Evie xx ... View more

Hi Susie First of all a big welcome to the forum and a big hug from me as you go through treatment and decision making. I was diagnosed in December 2016 and this site has been a huge source of support.   I have never heard of anyone being too old for implants. I am 51 and had an implant after a mx and node clearance, and some people have to have them replaced years later. Maybe someone else on here will have heard that advice or perhaps you can get a second opinion? If you do go for the implant option then I am happy to offer any advice, or indeed if you have any other questions I might be able to help with.   Love, Evie xx ... View more

Daisydi - great news on having the drains out, and also that you are using your arm normally. From my experience the answer to your question would be no - the numbness for me took many months to go, even now I don’t have full feeling back. So if you are the same, by the time the numbness goes you will have recovered and so won’t feel pain after (hope that makes sense and is reassuring). Strangely I was the opposite with BO smells - for the first time I could get away without deodorant! Evie xx   ... View more

Hi Stargazer1 - I just want to jump in on this chat to hopefully reassure you about the arm swelling. My arm swelled a lot a few days after my mastectomy. I immediately panicked that it was lymphoedema but my surgeon also advised that it was a bit early for lymphoedema. My swelling gradually went down, thankfully, and I’m sure yours will too. I read something about gently clenching and unclenching fists to keep everything moving. All the best to you. Evie xx ... View more

Daisydi - that is a very positive start to the day, I’m pleased to read that. Sometimes just sharing our anxieties and knowing that we are not alone with such thoughts helps massively. I relied heavily on this forum when I was having surgery and treatment. Xx ... View more

Hi Bluetit and daisydi   Bluetit - I want to wish you all the best for chemo, may it be as kind as possible to you - it affects everyone very differently. I’m sure you will have found the monthly chemo threads to join. I had chemo before my op so happy to answer any questions.   daisydi - sending you a big hug. I really understand what you say - I’ve been having some weird pains this week and now my mind has gone into overdrive imagining the worst. I should try and take my own advice, but that’s not so easy! Do come on here and offload any time if that helps you at all.   Hugs, Evie xx ... View more

Bluetit - thank you for such kind and lovely words and for making my afternoon. Xx ... View more

Hi Cel Touch wood the radiotherapy didn’t affect my implant - I don’t know if it can impact further down the line, I’m 18 months post surgery so hoping all is stable now. Google “pre pectoral implant with Braxon” if you would like more info on the implant I had. It’s always tough weighing up the options especially when different surgeons are prepared to offer different options. All the best and I’m happy to answer any more questions any time. Evie xx ... View more

Bluetit - I am sure you will be fine as your body is used to lifting people and equipment. I was told to be careful with heavy suitcases because I don’t lift those everyday so my arm isn’t used to that weight. What has your consultant advised? Driving will be fine too - just take your arm off the steering wheel when you stop at junctions for example and flex it. I think they want people not to drive for 6 hours non stop gripping the wheel. Evie xx ... View more

Daisydi - the time beforehand is hard as the mind can work overtime, I know mine did (and still continues to). I’ll see if I can help at all. First of all the drain won’t come out, they are hard to get out when the time comes. You may find that you don’t move so much in your sleep after the operation as subconsciously your body probably won’t want to roll onto the site. There doesn’t seem to be any answer as to who gets lymphoedema and who doesn’t, so you just need to take reasonable precautions but also live life as normally as you can. Keeping active is supposed to help, moving the arm around to help the lymph fluid circulate. I have a friend who has lymphoedema and you wouldn’t know she has it, she lives a very full and active life and it doesn’t stop her doing anything. As to the fear of spread, you are not alone with that worry. At the most difficult times I was advised to take one day at a time, or even one hour at a time, and not think too far ahead. That really helped me. Focus on treating yourself with your favourite things, get things prepared at home for when you will be recovering, buy some easy to watch dvds/chocolate. I’ve just re-read your diagnosis post - try to focus too on what your surgeon told you, that they have caught it early and also that only one of the two nodes tested was affected. Have you been offered a CT body scan? From what I’ve read some hospitals routinely offer them and some don’t - maybe you can investigate this to put your mind at rest? I hope that chatting on here will help get you through. Remember the Winnie the Pooh quote “You are braver than you believe, stronger than you seem and smarter than you think”. Hugs, Evie xx ... View more

Bluetit - I don’t know what your job is, but I was told that it was ok to continue with things that your arm is used to doing. And you will find as time goes on that you can do lots of the same things - I started trying to iron with my left arm, that was a disaster and my surgeon said it was fine to iron with my right, so I do it with breaks and stop if my arm aches. It wasn’t long since your surgery so you will definitely find things improve as time goes by. And you will also find your left arm skills improve a lot too!! Evie xx ... View more