Hi, I had a mastectomy and immediate reconstruction on 11 October. I’ve been recovering well, but got the bad news from the pathology results that there were cancer cells in the tissue margin taken from around the cancer as well as in the nipple and a lymph node. So on Wednesday I will be back in surgery to have more tissue and all lymph nodes removed and I will lose the implant as well. Thank goodness my surgeon had a spare slot so this could all happen eithin a week. But my head is reeling and I feel so sad that I have to go through the whole thing again.
Has anyone else had a similar experience? I feel that I have to try and park the emotional aspects just to physically get through the op, but am worried I will go to pieces afterwards.
Hi @crochetlulu,
I’m sorry to hear about your pathology results, resulting in further surgery. I hope it all goes well on Wednesday. If before surgery you’d like to speak to our team of breast care nurses, you can reach us on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm), or by posting in our Ask our Nurses board here: Ask our Nurses your questions - Breast Cancer Now forum
I’m so sorry you’re having to go through this. I also ended up back in surgery a month after my mastectomy and immediate reconstruction and I also ended up losing my implant.
I am a month on from this and feeling much better. It’s such a shock and it’s a lot physically to deal with another surgery, but I did find it easier to recover after the second operation.
I really concentrated on looking after myself in all the ways that I could and I basically hibernated.
I’m sending you all good wishes and love for your next surgery. You are in good hands
I’m now a month out from my 3rd surgery and back at work and having radiotherapy. You’re in the scary bit right now but I promise it will get better xx
Hi crochetlulu
I can sympathise. I had a double mastectomy in July last year (different cancer in each breast; strong family history so elected for full mastectomies with no reconstruction - quite content with completely ‘going flat’).
All 4 sentinel nodes were clear, as determined whilst I was still in surgery, but my observant surgeon removed another, more distant node he thought looked suspicious, for later analysis. Sure enough, this one turned out to be affected and had extracapsular spread so had broken through to the outer surface. This felt like another kick down so soon afterwards, when I’d just picked myself up from the original shock and from the speed at which many tests and the operation had followed. More cause for concern and renewed anxiety to deal with. I was then given the choice of zapping my armpit blind with radiotherapy, or having an axillary clearance of all nodes to physically examine the whole fat pad to see the extent of any spread. I opted for the latter and it was done 3 weeks later (along with some tidying up of dog ears from the mastectomies). It turned out that no further affected nodes were detected, but unfortunately I went on to develop lymphoedema as a result of the clearance (10 - 20% chance) and within 6 weeks (often doesn’t happen for 10 years or so). So my sadness is that I now have this lifelong condition (mild at the moment) when I didn’t need to have afterall. But there was no other way of knowing for sure.
To be honest, although the scars still pull sometimes, the actual surgery itself and recovery from it was the least awful part of the past 16 months. (Currently struggling much more with the hormone therapy side effects!) If you were recovering well from the first surgery, your body should cope okay with this second assault.
Wishing you heaps of luck for the op and subsequent recovery.
So sorry to read your post, I was in the same situation as you within 10 days of surgery, however slightly different as I had an infection.
This is such a worrying time for you, however in time when the breast has settled I feel sure you will be able to have another reconstruction, at the moment one step at a time for you, firstly to recover, and build up your strength again this will happen
Wishing you well, good luck going forward. We are all here to support you, take any help offered by family and friends
When your feeling up to it, please come back and let us know how your getting on
Thanks @Rach09 it is reassuring to know that it isn’t unusual for this to happen. I’m glad to hear you are back at work, I hope the rest of your treatment goes well. Very best wishes to you
Thanks @MistyK. I’m so sorry to hear you’ve ended up with lymphoedema. I’m feeling much more confident and actually had my best night’s sleep in a week last night. Keep strong
Thanks @Tili. Everyone’s comments have helped me so much. It was such a big decision whether to go for immediate reconstruction or not and then a blow to realise it had to go so soon. But getting rid of the cancer is the most important thing. Knowing that I’ve been recovering well from the last operation is a great help and I know what to expect this time as I recover. Thank you for your words of support, I will post back in a few weeks, hopefully with better news from my results.
[quote=“Rach09, post:3, topic:114285”]
Hi @MistyK@Crochetlulu
[/quote] et al
So sorry to hear, and hope all goes well for you guys. Just wanted to add a small bit of info about avoiding lymphoedema, which I only discovered from going to a party (!). A very kind lady gave me a tip from Rosamund Dean, who has written a book about her experience. It seems a lot of things we probably need to know slip through the cracks in the NHS at the moment. This is if your axillary lymph nodes have been removed, which limits your system’s ability to remove toxins. She was told to avoid nicks, cuts, scrapes, insect bites or even having a blood test in the affected arm, and that if she did things like cleaning or gardening, to wear gloves. Basically, avoid any form of skin infection on that arm. The risk is especially high early after the op, and over time you can relax about it more. She consulted a lymphoedema specialist through Perci Health (£65 a session). The physio exercises also seem to be essential. Good luck, everyone.
Hello I’m sorry to hear that you still had cancer in the cells of your breast. Yes I had the same issue and it’s not nice I first got diagnosed with cancer in 2014, I had a double mastectomy with implants put in but one failed so I felt lop sided. I did have reconstruction in 2016 but had lots of issues. 2018 I got breast cancer again under my arm by the auxiliary that was removed but my report came back the same they didn’t have a clear margin so the next week I went in and had more taken away including lymph nodes unfortunately I got lymphedema after. Thought I was doing ok I kept getting the same pain back but was told nothing there all clear until end of September this year I had the same pain as before and a rash across both breasts. The constant didn’t think it was anything then I had a follow up appointment but a different consultant who brushed me off before this time I stood my ground and when his attitude said, well do you want me to send you for a scan I said yes. October I was diagnosed with stage 3 cancer within that similar area. I was gutted I had done everything right by having both removed in 2014 yet I got it back twice. I go in on 20th of November to have a double mastectomy again, my reconstructive boobs are going and I’m going flat. This time it messed with my head and I will worry all the time. My bp has been high with stress since Iv been battling the receptionist at the doctors to get me in so I can get additional medication to bring it down before surgery to which she caused me more stress through lack of understanding.
Sorry to have gone on but yes I do understand how you are feeling. We have good doctors and brilliant surgeons and anaesthetists but unless you have or are going through cancer people do not understand.
All I can say to anyone check and check yourself all the time.
Iv had many a surgery since 2014 but having to go back in to surgery because your doctor failed to take enough is horrible, if mine had been removed with enough margin clearance I wouldn’t have ended up with lymphedema
I wish everyone well regardless of what stage you are at, please also remember that men can also get it and so make sure loved ones do check, men isn’t as common but it does happen
Hello I am due to have a second mastectomy next week and I’m going flat this time. I had a bilateral mastectomy in 2014 with implants but it failed in the cancer side. I did have reconstructive surgery but then still went on to develop cancer twice more, again it was in the cancer side so now Iv opted to remove both this time and going flat. I was 47 the first time and 57 now. In 2014 you didn’t have the styles of bras you have now and for a majority of the time I will stay flat but summer time and holidays I will like to have something to give me a shape. I will also in time have a nice tattoo done. I also have a family history of breast cancer but I was the only one who needed to have my breast removed so I opted for both. I was given a choice to use a wire to remove the remaining cancer but I will always worry about any slight pain and niggle. I just want this cancer removed and enjoy Christmas and start the new year of as a new person. I’m still alive with my husband so what does it matter if I’m flat.
I wish I had made the same choice as you 10yrs ago. Getting breast cancer back after mastectomy is about 6% I got it twice. I’m in a small minority of people who got it again and again. I wish I had been given facts about it coming back before I had, had reconstructed surgery as this time it was hiding under my scar site.
Hope you are doing ok now
Thanks for joining the conversation ‘sprout’. You’ve had a rough ride!
About 20 years ago, I consulted a breast surgeon about having an elective double mastectomy because of strong family history. The surgeon was quite open to the idea. I was required to attend psychology sessions to make sure I was ready but only went to one as I found it very patronising. Anyway, long story short, a chance remark by a relative “Why have surgery before you need to - it comes with its own risks” stuck, and I didn’t go ahead.
Now, 2 cancers, a double mastectomy anyway, axillary clearance, lymphoedema, radiotherapy after effects, tiresome hormone therapy side effects and the eternal fear of recurrence or metastasis … oh how I wish I’d saved myself from being in this situation. I could have prevented all this. Listen to your intuition, every time …
Hi I had a double mastectomy and within 6 weeks I lost an implant in the original cancer breast, I felt lop sided 2yrs later reconstructive surgery and at first it was brilliant new boobs flat stomach but then it went down hill. I got cancer again twice in the breast and I’m now having both removed again and going flat, 6% chance of getting it back within 5yrs I was 4.5 years the second time and was 5yrs to the day I got diagnosed for the third time. This time is messed with my head where I’m normally ok Iv got it bad this time. I’m truly ok going flat now, Iv done the genetics test but it takes 12 weeks so January 24 before I will find out.
We all to remember the only person who knows our body is us, I always say stand your ground if I hadn’t I wouldn’t even know I’d got cancer.
I will be making a formal complaint after my surgery is done and my head is clear. I just need them to know we are not stupid women who worry all the time but we tent to know if something isn’t right. I would rather apologise for feeling stupid then being ignored and it very bad.
So sorry to hear of what you are going through, Sprout. I agree, you can’t really understand BC fear until it happens to you. The anxiety and ‘messing with your head’ are completely understandable. I wish I’d known that The Royal College of Aneathetists has issued some new hypnotherapy-type techniques available on its website. No-one seems to know about them, or I’d have used them the day of my surgery, because ‘terrified’ doesn’t even begin to describe my state of mind… [Preparing your mind before surgery 7]
(Preparing your mind before surgery | The Royal College of Anaesthetists)
Or Is it worth you trying some form of therapy? It may help to have someone listen. Ask your BCN if there is any specialist support through your hospital. If not, Macmillan offers people some free (on the telephone) courses of BUPA therapy. Have a look on their website. Or depending on where you live you may be able to access a ‘Maggie’s’ cancer care centre, which so far in my experience has been brilliant. Good luck, and maybe make sure your doctor prescribes you some Diazepam (Valium) to help with the anxiety on the days before. xxx
Hello thank you for your message. Iv never heard of any of what you have said. In 9 years Iv never been offered counselling until now, I’m on a list but I live on an island in the U.K. that has big population with little resources available. Iv never been offered macmillan either. Nobody has explained what to expect this time as I’m going flat what’s involved or do I still need to take in a support bra or not. Last time I had implants then reconstructive surgery so I knew I needed a bra and good tummy holding support knickers to help with my stomach. All I know is that I’m staying in overnight and I have my information on admission.
I will just be happy to get the cancer removed and hope after the third time once it’s removed I can minimise the fear of it coming back.
@Sprout. Hello my dear. This whole thing is so bewildering, you definitely need help and better information. Breast Cancer Now and Macmillan both run services where you can talk to a specialist nurse who will be able to help. I’ve put the BCN number below.
Look up the Macmilllan counselling here. It’s not like waving a magic wand, and it’s only 6 sessions, but it may be useful. It’s on the telephone, so being on an island doesn’t matter. (and it’s free. Although I don’t think you get it automatically, you have to apply, online, through that link. Just don’t say you are suicidal, for some baffling reason they won’t accept you if you are…) Good luck, I so hope things will get better for you. Link and tel. numbers here:
**Breast Cancer Now Call us free on [0808 800 6000]. Our opening hours are:
Monday to Friday — 9am to 4pm
Saturday — 9am to 1pm
Calls are free from all UK landlines and mobiles.
Hi, just to let you all know my surgery went well and my drains came out yesterday. This time has been more painful because of where the wound is located, but it is all healing nicely.
My results appointment is 30 November and I already have an appointment with oncology on 6 December.
I am not feeling confident about dealing with how I look now, but whilst everything is hidden with dressings it’s not so bad.
Thanks for all your kind messages since my last post xx
xx