Breast Cancer Now Forum

Hi amandajgr, I had a very similar experience. Was told 1.5 cm tumour and no lymph involvement when diagnosed with lobular breast cancer, but after lumpectomy, jumped to 3.7 cm and isolated cancer cells in one of my sentinel nodes (I also had to have a second op due to not having clear margins) The problem with lobular cancer is that it has a hard central lump with cancer chains coming off of it, rather like a spider. When scanned by MRI, only the central lump is seen, since the chains tend to be single cell and too small for detection. So that’s why us lobular ladies can double or triple our tumour size post lumpectomy from what we’re told at diagnosis. I was totally gutted. Went from being told that I only required rads to being offered both chemo and rads. I went for both chemo and rads and have never looked back. That was 8 years ago, and here I am still doing well and still NED. I’m sure there are plenty ladies on this site who have had similar experiences, so please take heart. Whatever treatment you require, I wish you minimum side effects and maximum success. Take care, Ann x ... View more

Hi Ruth, Just wanted to share with you that my sister’s workmate was grade 2, HER+ with lymph node involvement and is doing fabulously. She was diagnosed 10 years ago and has just retired at the age of 67. So the answer is yes, this is survivable. Sending big hugs Ann xx ... View more

Hi Poppy,   Thank you so much for taking the time to reply. It's pretty pants to have the brand that we've been used to taking be unavailable.  I've been led to believe that this a temporary shortage of the Mylan brand and that it will be available next year.  Unfortunately, I cant wait that long, so am going to try the relonchem to see how I go.  I've looked at having a private prescription for 10mg Teva, and it will cost £112 per month.  Soooo, will try the relonchem and see how I go.  All the best in finding a solution to your predicament.  Ann x x ... View more

Hi Tillycat,    i know exactly how you feel. It’s almost six years ago since I had to make the same decision. My cancer was much bigger than yours (37mm) and I had a few rogue cancer cells in the first of two sentinel nodes removed. My oncologist wanted me to have chemo, but my surgeon was not so keen. However, after meeting my oncologist, I decided to go ahead and have chemo. Have you run your figures through the NHS predict tool to work out the benefits of chemo over 5, 10 and 15 years? It is only a guideline but it may help you make a decision. My personal viewpoint is that I’m glad I went ahead with it. I’ll never know if it was truly worth it for me, but I do have peace of mind knowing that I did everything I possibly could to defeat this horrible disease. Whatever your decision, I wish you all the best for a healthy future. Ann xx ... View more

Hi Jabs72,   The feelings you have at the moment are the one thing that us ladies all go through when diagnosed, but as strange as it sounds, You will feel better when you have the full picture. I was diagnosed with my cancer way back in 2013. At the time I met and made friends with another lady who was diagnosed the same day as myself. The reason I tell you this is because she too had been told that they were sure it was in her lymph nodes and she was very very worried. This indeed turned out to be the case, and she still had 4 of 17 nodes affected post treatment, but she’s still very much here and loving life with absolutely no sign of cancer. So please don’t get too hung up on the nodes issue. There are plenty people who have similar outcomes. Wishing you all the very best with your treatment Ann x x  ... View more

Hi Anika623,   i had double DIEP recon using the fat from my abdomen in December 2015 and have never regretted my decision. My breasts look pretty good although I’m still waiting for a final op for symmetry which will be being carried out soon. I will then have nipple tattoos and think I will finally be able to move forward with my life. I have no feeling in either breast anymore, and am numb round my left underarm and upper right thigh where they took a blood vessel “for plumbing”. But knowing that 98% of my original breast tissue was gone was more important for me psychologically than loosing feeling in any part of my body. The op itself was long (16 hours) but my lovely surgeon told me that this had occurred because I have wonky blood vessels. 😳  I was also unfortunate in that I caught a post op infection so had to stay in hospital for 11 days. I was off work for about 3 months in total but did take my time going back because I’d worked all through chemo and rads and was totally knackered at the end of it!! So I learned my lesson and took my time after recon. Hope this is of some help. Best wishes with whichever treatment plan you decide is for you x x Ann x x  ... View more

Hi Getorade,   I don't live on this website the way I used to, but just saw you're post and thought you might like to know about my mum. She was diagnosed with BC way back in 1982 at the age of 47. She will be 83 years young in April next year, so that's 35 years and still going strong! In those days there was no differentiation of bc types, and she wasn't given any chemo or rads, just surgery. I myself was diagnosed with stage 2 grade 2 invasive lobular cancer in 2013 at the age of 50. I had surgery, chemo and rads and continue to do well, so I hope that gives you some encouragement. Whatever your treatment plan turns out to be, I wish you all the best. Take care. Ann xx ... View more

Sorry, forgot to add that my mum had breast cancer way back in the 80s and is now a wonderful 82 years young, so, yes there are people who live a full life span and more after a breast cancer  diagnosis. Hope this helps X X  ... View more

Hello Rosie,   My goodness!!! I so resonate with how you are feeling just now. I too had invasive lobular cancer, and I too had to have a second op due to clear margins not being achieved. I was also told before my second op that I would only require rads, but for me, that changed and I was offered chemo. It was up to me to accept this or go with rads only. After talking things over with family, I decided to go down the chemo option. I can now honestly say that chemo wasn't as bad as I thought, and I've never regretted my decision to go ahead with it.    All ll this happened for me in November 2013, and I have just been discharged from my cancer team and feel fab. Going through all this 💩 is so hard, but there is a light at the end of the tunnel!! Hang on in there!    Not it sure how big your tumour was, but bear in mind that us lobular ladies normally have larger lumps than ductal ladies due to the fact the they're difficult to detect and don't alway show up on mammos.    Sooo, as someone 5 years down the line, I wish you all the best with your treatment whatever it may be. Take care and big hugs, Ann X X X  ... View more

Hi Kitty,   Just popping in to give you a little encouragement. I had had lobular cancer way back in 2013 and am approaching 5 years from diagnosis and over 4 years on from chemo and rads, and I'm still here loving life. It's normal for lobular to be larger in size than ductal because it tends to be a core lump with single cells growing off like a spiders web, so is more difficult to see on mammogram. I remember thinking that every ache or pain was cancer, no matter where in my body it was. That's perfectly normal too. One bit of advice I would give is that if you feel you need to have a double mx, stick to your guns and see if your team are willing to comply with your wishes. I ended up having a double mx post treatment because I just couldn't move on with my life (I had requested a double mx on diagnosis because of family history, but my team convinced me to go with WLE) Big hugs and wishing you all the best whatever your treatment plan X Ann x  ... View more

Not taken offence by anything you've written at all Marla. Hope all goes well for you at your appointment. Ann X X  ... View more

I'm very sorry if my reply was taken out of context. I do not advocate following my example by not seeking permission before recording consultations. Rather I was trying to communicate how much comfort they gave me through treatment and beyond. Also, after talking this over with my daughter, she assured me that she DID talk to consultants etc prior to recording. My mind really wasn't on such matters at a very distressing and stressful time. Hope this clears things up.  ... View more

Hi Marla,   I recorded all of my consultations with oncologists, radiologists and surgeons when I was diagnosed back in 2013. I actually didn't think to ask whether they minded or not. Perhaps very naughty of me. It was my daughter who came up with the idea after I could hardly remember a thing that was said to me on diagnosis. The thing is, that when I listened to the recordings later, I realised that I had focused on the negatives and that there were quite a few positives that I hadn't heard. Made me feel so much better when I listened to the replays. Would def do the same again and would highly recommend it to new patients. Hope you hear loads of positives at your appointment. Ann X X  ... View more

Hi Frances   Think it might be today that you're going to get your results. Wishing you all the best and really hoping for a positive outcome. Take care. Ann X X  ... View more

Been thinking of you all day Frances. Not the news we wanted to hear, but please remember that it could still be scar tissue. The consultant radiologist at my hospital was convinced that my scar tissue was a lymph node "that was affected". He added that whatever was there "shouldn't be there" and then berated his colleague who had already told me that my lymph nodes were clear with the words "we are doing this for confirmation purposes". As they left the room, one of the radiologists wished me "the best of luck" and the nurses in the room commented that there was still a small chance it might not be a recurrence. So I was 99% sure that my cancer had returned. But my report came back saying that there was no node tissue present in any of the biopsies taken, and that there was no evidence of malignancy either.    They can see lymph nodes on ultrasound, although they can never be 100% sure that there they don't have minute bits of cancer in them unless they're removed. Can you request a core biopsy? The fact that they want to do a FNA rather that core would make me think that they don't expect it to be cancer. My radiologist consultant also said that there was "no point in carrying out a FNA". This convinced me that he was pretty sure what he was looking at and that it wasn't good. But he turned out to be wrong.   I know exactly how you're feeling, and no amount of advice saying not to worry will help. I hope with all my heart that your biopsy comes back negative. Sending you big gentle hugs and lots of love, Ann X X  ... View more

Awww Frances. That's such a shame that you've not had the confidence in your team that you should. I can't really complain about mine, other than I let them convince me to go for WLE rather than mastectomy from the off. But they came up trumps for me when I just couldn't get on with my life and offered me a double mastectomy with DIEP recon. My BCN has always been so supportive and has contacted me quickly when I've had any problems. She even came in to see how I was getting on after my recon op. Think I've been one lucky bunny from that side. Take care and will look in tomorrow looking for some good news from you.  Ann X X  ... View more

Hi Sarah. I was a tad unfortunate in that I got an infection post surgery. Ended up in hospital or 12 days instead of the expected 5-7. But this doesn't happen to everyone, and I was unlucky, so please don't think this will happen to you. When I got home I needed help to shower and change dressings, but other than that, I felt quite good. Within a month, I was feeling pretty normal, although my wounds took a while to heal and I did have have quite a few surgical clinic appointments so they could keep an eye on them. I didn't drive for 6 weeks post surgery and returned to work in the first week of March, so did need almost 3 full months off. I'm really happy with my new boobs and am really glad that I had this procedure done. I know 2 other ladies personally who had this procedure, and we all had about the same recovery time as far as driving and returning to work is concerned. And please remember that this op takes a lot out of you, so be kind to yourself for the first few weeks. You may well be exhausted by menial tasks to start with, so take your time to rebuild your physical strength a day at a time. I walked every day, venturing a little further each time. Hope your op is plain sailing and that you're as happy as I am with the outcome. Ann X   ... View more