Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
10th April 2021 by Amanda Verrechia & Linda Ellis and Nikki Hughes
What was your experience of the period just prior to your mastectomy? Was everything explained to you about the type of procedure, options available and what to expect from recovery?
I was given basic details of what to expect from the mastectomy surgery and recovery. I was given written information and the contact details of the breast care nurse should I have any further questions. My mastectomy was scheduled during covid so i wasn't given any details about reconstruction, just advised to opt out at that time as it would delay the waiting time further. ( I was thought to be stage 2 at this point Dec 2020) A pet scan to check lymph nodes was when it was discovered 3 small spots 2 on spine and 1 on a rib.
What was your experience of the time just after the procedure? Did you find recovery difficult?
What was your experience of the time just after the procedure? Did you find recovery difficult?
After my surgery and my time spent in the hospital I felt very well cared for and was given everything I needed. A physiotherapist showed me the arm exercises I needed to do to keep my range of movement in my arm as I had lymph nodes removed. I only had mild discomfort after the surgery and didn't need painkillers after the 2nd day post op. The drains I had in for 5 days were a little restrictive, felt a little like a ball and chain that I had to carry around. Once the drain was removed I felt able to get out of the house for small walks until I built my energy back up.
How are you now after the procedure? Did you have any complications or long term side effects from the procedure?
My surgery was 8 weeks ago and I feel I have recovered well. I was able to drive after 3 weeks and can now do everything I could preop.
What was your experience of the period just prior to your mastectomy? Was everything explained to you about the type of procedure, options available and what to expect from recovery?
I was due to get my mastectomy after 8 rounds of chemo, due to covid and the fact the chemo was not working on my right side I was put forward for it after 7 rounds, for that I was very thankful as I believe if I didn't receive it when I did it might not have went ahead.
I had it in my head from the time I found out I had cancer that I wanted a mastectomy, originally they were looking to do a lumpectomy but after they found cancer in both my breasts at first diagnosis they agreed a mastectomy would be best.
Due to covid I had one appointment before my mastectomy, I spoke with a surgeon (not my surgeon but I had met my surgeon twice before when I originally got my diagnosis) she asked me if I knew what I was getting and why. I explained that I did and she talked me through the procedure, even drew me a little diagram to explain where they would be going in and roughly how my scars would look.
Apparently reconstruction was not an option for me at the same time, as my surgery would take around 6/7 hours. They said if I still wanted a reconstruction that would be around 18 months after the mastectomy this would be an option, although I could notify them at any point over the years if I then thought I was ready.
They advised recovery would be around 3 or 4 months and medication would be given to help with the pain. They also notified me that counseling help was available should I require it.
It was also explained to me that they intended to remove all my lymph nodes under both arms, usually they would do this a month or so after surgery but again due to covid they thought it would be better for me to have it all done at once. They knew I had 2 cancerous nodules on my right side, so as a precautionary they wanted to remove them all.
What was your experience of the time just after the procedure? Did you find recovery difficult?
I was told the procedure went very well, when I woke up I remember feeling relief that it was done and I had survived it. Even though everything was explained very well to me I had never had surgery of any kind before and when they throw in the possibilities of what could happen it does get you thinking, but the bigger picture was far scarier. I was very lucky as the nurse that was taking me through to the operating theatre I knew so we were so busy catching up on the olden days ????, that I didn't have time to be nervous and I was out of it before I heard the count down.
I was in hospital for 4 days after surgery, the night of surgery and the next day were a bit of a blur as I still had a lot of pain meds in my system so I was In and out of sleep. The ward was very quiet so the nurses left me in peace to rest as much as possible but also gently pushed me to get up as soon as I possibly could. I had a catheter fitted for the first 48 hours and then they were keen for me to go to the toilet myself and get a shower. I remember the pain was horrendous when I first tried to get up (with the help of the nurses). I still had my drains in and the one on my right side was very sore. The nurse left me on the loo myself with the alarm by my side but helped me to shower as I would never have managed myself. The following day I showered myself, it was still very difficult but I was determined to get out of the hospital as soon as I could. The hardest thing for me was getting on and off the hospital bed as I couldn't use my hand and arm to lean on.
I also couldn't sleep on my sides, but I was given the love heart mastectomy pillows to help me get comfortable.
Once the nurses were happy that the swelling was going down and my drains were running clear they wanted to remove them, I remember feeling so happy about that! The one on my right was giving me pain. I remember them saying about taking a deep breath as they pull them out, nothing could prepare me for the pain I felt as they pulled out the right one.... turns out the drain was lodged pretty far in and that's why I was getting the pain... my left one coming out was a breeze in comparison.
Since my drains had been removed they were happy to send me home, I was advised that I had to keep an eye that there was no swelling and also to ensure I kept doing my exercises to help prevent lymphedema. When the bandages came of for the first time and I looked at myself in the mirror I felt happy and sad at the same time, my body had been mutilated and I had lost my lovely 36d boobs that gave me my figure, I looked like a boy...I was bald, flat chested and exhausted. But the sadness quickly washed away, the relief of having the horrible cancer out of me was more important and I just wanted to get better as quickly as possible to spend time with my family.
Once I got home I struggled to get comfortable in bed, the pain had eased alot but I never realised how much my breasts balanced me out when I lay on my side to get comfortable. The uncomfortable feeling continued but I ensured I was up and about and doing all the chores around the house (except the ironing and vacuuming). I got a little lazy at one point of doing my exercises and it did affect my arms a bit and when it came time to do the vacuuming it knocked me for six and I had to rest the rest of the day after that.
How are you now after the procedure? Did you have any complications or long term side effects from the procedure?
My procedure was almost 12 months ago now, it actually feels like a lifetime ago!
I have healed very well and my scars are very neat. I still look in the mirror before I put my clothes on each day, I think it helps me get used to my scars rather than wanting to hide them. I have been very open with family and friends at showing my scars (I think of them as my warrior wounds). The area in general is still very delicate, not where my scars are but above at the very top of my chest. I'm pretty sure they would have healed better by now but I had to have a second surgery 3 months after my mastectomy.
When I went on to visit my surgeon 4 weeks after my mastectomy to see how my wounds were healing and to check no extra fluid was around the areas, my surgeon and nurse asked how I was feeling and would I like to speak to a Councillor? I said I was feeling fine but keen to check they had removed all the cancer. When they advised me they were happy they had got all the cancer and I was healing very well and the radiation I would be receiving soon would help scoop up all the little bits around the area and my surgeon would see me in a year's time (my appointment is 13th May 2021), I was astounded... erm, why have I gone through all this and you are not scanning me to check you have all the cancer out? I felt very scared and confused... I wanted to power on knowing that all the cancer was gone but I could be sure. I managed to get my oncologist to agree to a further scan once my radiation had been completed... At this scan it was found that I had a few nodules in my chest wall that were a concern and that they wanted to do a biopsy. The nodules were right behind my scars so the only option was to go In from the side and above. The biopsy confirmed it was more cancer but they were not able to remove the nodules as they were still so small and attached around an artery. So at that point it was confirmed I had secondaries.
I still am unsure about my feelings of my mastectomy, mostly due to having the secondary diagnosis straight after having it removed. I honestly thought in the beginning a mastectomy as soon as possible would help cure me of this for a long time, but I'm left with the feeling of being let down. It's hard to explain as I have the relief but also the heartache of wishing they had found the other cancer sooner so it could all have been removed at the same time.
Emotionally I am doing well, I have never felt the need to speak to a Councillor... the lovely ladies of this group and my amazing friends and family have helped with that. I am physically able to do most things I could before my mastectomy, although I have noticed I don't have as much strength as I used to for carrying things and stretching to reach things .
I have not returned to work yet due to covid restrictions but hope to be able to do that soon (depending on my next treatment).
My new set of nurses are great at following up and seeing how I'm doing and I know the option of reconstruction may still be there but I'm happy with my decision to be flat... I was given soft fillers which I mostly still use as they are pretty comfortable but I do have the gel ones that I purchased myself for the odd dress up day. My next mission is to find a bathing suit suitable for me as I have found certain clothes are no longer suitable for me... but who doesn't like to shop for new clothes
What was your experience of the period just prior to your mastectomy? Was everything explained to you about the type of procedure, options available and what to expect from recovery?
I was diagnosed with what I was told was 'pre cancer DCIS' in Jan 2016 after mammogram and biopsy. Given lots of leaflets to take away and read. We were booked to fly to New Zealand a week after this diagnosis for a 9 week holiday of a lifetime trip and we decided to postpone surgery until our return.
April 2016 saw a consultant and was told I had a choice of a lumpectomy plus radiotherapy or a mastectomy. I opted for mastectomy as I wanted to be sure they got all the affected cells and was wary of radiotherapy. I don't think I ever really understood at that stage what we were dealing with. It was always described to me as 'pre cancer DCIS' which I took to mean that it was something which would turn into DCIS if left, not as I've since been told that I had DCIS but no obvious sign of invasive cancer.
I questioned why they wanted to sample lymph nodes and was told it wasn't absolutely necessary in my case as I had pre cancer so I said I would rather not have it done. In hindsight I feel the information I was given about sampling was poor, not really explained and I was not told that it was advised / good practice.
Consultant seemed surprised I didn't want reconstruction, had just assumed I would want one and started discussing different options. When I said I definitely didn't want reconstruction she said that was fine but if I hadn't been so against it I could see that it would have been very easy to get sucked down that route.
Told my surgery wouldn't be done by my consultant but I didn't get to meet the surgeon before the day of the op.
Looking back I feel we weren't given enough information or time to discuss the information with a health professional.
What was your experience of the time just after the procedure? Did you find recovery difficult?
So I had a mastectomy at the end of April 2016, told I would be out the same day or possibly might have to stay in overnight. As it happens it was the latter.
When I arrived on the ward pre op, the surgeon turned up and drew on my chest to show where to operate, all done with no conversation. I felt very alone waiting to go down to the theatre, everyone else on the day ward was having minor ops like removal of small skin cancer.
Felt OK after the op, sore obviously but nothing too bad. Went home with the drain in. Given a softee insert to use in my bras.
Had problems with the drain site, which got very sore. Breast care nurse sorted it out and then after about 10 days had the drain taken out. Had to return once to have fluid drawn off after drain was removed but after that it was all ok.
Recovered really well but then 6 weeks after the op I suddenly felt extremely tired. The extreme fatigue continued for about 9 months getting a bit better towards the end of that period but I've never recovered the energy levels that I had pre op. All the Drs I've seen about it have just shrugged their shoulders and said there was nothing clinically wrong with me.
6 weeks post op I had appointment for a false boob, it was an awful experience, the woman who fitted me criticised my clothes (too tight fitting) and basically said I should think myself lucky that the NHS was giving me a false boob for free. The boob she gave me was too big but I just took it and sobbed all the way home. I hardly ever wore it, once for my son's graduation and that was about all.
I had regular check ups with the surgeon who did the operation, first six monthly then annually. He was extremely uncommunicative, never said more than a couple of words to me at each appointment.
I was never given any hint that the cancer might return, so it was a complete shock to be told in August 2020 that I had cancer in my lymph nodes that had also spread to my bones and so was now incurable, stage 4 breast cancer which had originated from the breast I had had removed.
I only found out about the cancer in the lymph nodes because my gp referred me back to the hospital because I had a pain in my arm. I had an appointment with a different consultant to the one I had seen in the past. He listened to what I had to say and examined me. That led to an ultrasound and biopsy, then ct scan then bone and mri scans. I think if I had seen my regular consultant the spread wouldn't have been picked up, that I wouldn't have been sent for tests.
Because the cancer in the lymph nodes arose from my original 'pre cancer DCIS' the hospital had to investigate my case. They didn't find any evidence of bad practice but that I had been unlucky. Apparently it hadn't been just DCIS but on re examining the samples taken back in 2016 they found more than one tumour, the largest being 6mm. What wasn't clear from the feedback we got was whether it would have changed my treatment after the mastectomy if they had known it was invasive cancer at the time. One of the team implied I would have been offered chemo but another said that I probably wouldn't have. We were also told that sampling the sentinel nodes probably wouldn't have shown anything although obviously if I had had the lymph nodes removed I wouldn't have ended up with the tumour there now.
How are you now after the procedure? Did you have any complications or long term side effects from the procedure?
Regarding the mastectomy itself, I've never regretted not having reconstruction but it did take me about a year to come to terms with being lopsided. The experience I had with getting fitted with a false boob stopped me asking for help to get one that actually fitted me and that matched my remaining breast. So I've always gone without and just been lopsided. Part of my job was running training sessions and I was very self conscious the first few times I stood up in front of a group of strangers. But as I say after about a year I just stopped worrying what other people thought.
I reckon it took me about 3 years to stop worrying that I hadn't got breast cancer on the other side. I think the psychological effects are very much ignored and I wish I had found a support group to discuss things with back in those early days.
My experience has been that it's not easy trying to find out and understand stuff about breast cancer. I think in my case it was just I couldn't process it all, it was scary and complicated and I so wish someone had sat us down and talked it all through with us. I was given the phone number of the breast care nurses but I didn't like to bother them. Consultant appts always seemed time limited and I just didn't know what questions to ask.
The wound healed really quickly and well. Exercises helped with the initial tightness so would encourage others to do them.
The main thing I would say has been the mental stress of having breast cancer and the mastectomy. I've always thought of myself as sensible, logical, not one to get over emotional but I have found this all hard to deal with.
I don't know if the fatigue was to do with the operation or not, I do know it was real and has been hard coping with it as I've always been a very busy person.
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