terrified of mastectomy

Hi louise - I had a mastecomy and tram flap reconstruction on 24th July. I was upset when I was told I had cancer but quickly told myself that I would have a mastecomy as I wanted the certainty of getting the whole tumor out. I also wanted to have a reconstruction as I knew I wouldn't handle having no breast there, even if the new one was once my tummy.

To date I still feel a little sore, the incision lines are tender and I have scar tissue all around the reconstructed area which is quite uncomfortable. What frustrates me more is having restricted movement in my arm and the cording is painful. But every day the degree of movement does improve.

I was told that recovery can take up to 6 months for my particular situation.

My body looks quite different now as I have a hip to hip abdominal scar and another scar where my boob used to be. No nipple now - which does take some geting used to. On the whole I look at my body in the mirror and even though it isn't the same as it was, I am proud of my scars. One thing I was surprised at was that I can still wear low cut tops and no-one will be able to tell I had had a mastecomy. My new boob is slightly larger than the original but until all the swelling and scarring goes down I won't know how well they will look in clothes. So far it's a good match.

I am not under 30 (38) but still young enough to appreciate your feelings. I too work in school, but as a TA and know how demanding the job is. I start chemo on 4th Sept and don't know whether to risk going back to work whilst doing chemo for risk of snotty-nosed kids passing on their germs, coughing and spluttering all over me.

I hope this has been of some help to you.
Try not to worry - easy enough to say I know.

Take care
Anneliese

I haven't had BC, but I wanted to say how affected I was by your message. Louise they would be exactly my reactions, and I am so sorry that you are being put through this at such a tragically young age. I hope that you are helped by Annesliese's response as I think she is staggeringly pragmatic and courageous. I am full of admiration for confronting the enemy and then saying, well I'm here and those scars arepart of my history. I was a voluntary TA for a year, so I know how the some children don't seem to have been initiated into the use of a hanky, and cough and sneeze all over everyone. I really hope that your chemo goes smoothly.
With very best wishes to both of you xxx Penny

Hi Louise

You must have been shocked at the news that you have to have a mastectomy. I'm older than you (55) but my appearance is still important. I had a mastectomy 2 months ago (although I have to wait 3 years for a reconstruction) and I was back at work after 3 weeks. Although I work in an office, which is not as physical as teaching, I do travel to London every day during the rush hour without problem. I've learned that the doctors tend to give realistic estimates of recovery, although they will always stress that everyone is different.

So trust your doctor and barring unexpected problems, and if they said 2 months expect to be back at work in 2 months.

The scars are as big as they need to be but wherever possible they use "superglue" rather than stitches as this gives a cleaner and neater scar with less ridging.

Good luck with your recovery and keep in touch with how you get on. I hope I have reassured you a bit, but this will inevitably be a stressful time. There is usually someone around here if you want to chat.

lots of love and hugs
Sharry xxx

thanks for your reply it has helped. I wont have a tram flap as they don't offer it in bristol, i think their using the muscle from my back (dont know what sort of flap that is !) I just had a question about the cording. Its been 16 days since WLE and i am having major cording problems. The ligament sticks out a mile and i cant raise my arm to the side more than 90 degrees. It hasnt improved on 90 degrees for nearly a week. I'm not actually in pain from it but am getting a bit worried that its never going to get better! How much movement do you have?

Hi Louise - I can lift my arms up to about 120 degrees now, but not straight away though - it takes a bit of stretching to get there. Mine is quite painfulup the length of my arm but it is the scar tissue (I think) which is quite tight in my armpipt. I saw the surgeon yesterday and he was surprised that I didn't have more movemnt in my arm considering my age but he did tell me to push through the discomfort and really stretch into the exercises. It has taken a couple of weeks to get to this point and I do see an improvement each day. The surgeon has referred me onto a physiotherapist though just to see if I am doing enough work on my arm and to figure out what else I can do to improve the mobility. I have read somewhere that cording can last for months with some women.

Hope that helps
Anneliese

sorry to hear your news..i know its scary stuff but your not alone.
i had a bi-lateral mastectomy a year ago ..tumour only in right side but as i have a strong family history i opted to have both breasts removed.
yes the scars are big but they look better all the time.yes my breast arnt the same as before but hey the tumours gone and whilst i know that how they look after is soooo important its not everything.
i thought i wasnt bothered how they looked as long as it was gone but it does matter and you really can get a decent looking breast afterwards!!
i was 39 at the time of diagnosis and considered young!
please take your time in returning to work and depending on any further treatments take it one day at a time ...i still suffer fatige due to chemo and 4 opps but it really is surprising how well your body heals
i wish you all the very best for your opp and hope to hear from you again... send me a PM anytime
love mandie

100% positive but keeping it real!!!!

sorry forgot the cording bit!!!
yes it hurt like mad but again gets easier with the exercises they give you post-opp but can look wierd...dont panic...i rang my BC nurse in a panic and gave her a laugh trying to discribe it!!
best wishes
mandie

Hi Louise,

I was 24 years old when i was diagonised with breast cancer at the begining of this year. My WLE revealed that my whole left breast was covered with DCIS and that my only option was a Mastectomy.
I then made the choice to have both breasts removed at the same time -although i was lucky enought to be offered reconstructive surgery at the same time as the mastectomy, which really did help a great deal as i woke up after the op with better breasts than before!!

Everyone is different with regards to how you recover - i was lucky enough to be out of hospital after 3 days - being at such a young age i knew my body could handle the op. although i did prepare my body before the op by eating plenty of fruit and veg. i was sore - but never in great pain and in fact i think i only took paracetomal while at home. It will take some time for you to be able to move your arms freely again etc - and almost 5 months down the line i still get a little pain every now and then!!!! I stayed off work for 2 months as well.

I found the hardest thing was to look down and see my scars - i had my nipples removed therefore i have scars across both breasts and under both my arms where the lymph nodes were removed. and although i know they can do reconstruction for these, looking down and seeing something different was hard to get used too. but it is not the end of the world and only myslef and my partner know about the scars. eventually it does become easier, and after months my scars are finally starting to fade.

I wish you all the best for your op - and i hope your recovery is as successful as mine was.

Reagrds
xxx

I have not had a mastectomy, but I have had chemo. It occurs to me that while you are having chemo, you might not be well enough to work, but if you are, just make sure you have flu immunisation. Have it anyway of course.

It should be a good opportunity for you (with the OK of the school management) to turn it into a teaching situation. Draw a yellow line round your desk and tell the children not to come any nearer than that. Of course, you would already have explained that you are on chemotherapy for cancer and cannot risk infections, so they must be biosecure around everyone. Well you know what line to take depending on the age of the kids. They also need to know about washing their hands while singing "Happy birthday to you". It takes that long to do it properly.

Good luck, and a fast recovery.

Ruth

This is my first blog, so forgive me! I am scheduled to have a double masectomy on Oct. 1. A little history - my mother died at the age of 38 (I'm 31) after a 5 or 6 year battle with BC. They have found a mass under my left arm and wanted to biopsy it and I've chosen to have a full masectomy instead. I'm tired of holding my breath every six months to find out if they are going to find something again and if it is or is not cancer. So I will know the day of my surg.

I guess what I'm saying is I know how scared you are - I'm terrified. I have a 2 year old and 5 year old little girls. I'm very active and love to be outside running, riding, whatever the case may be. I'm so scared about how I'm going to look, what my husband is going to think/react, what my girls are going to see me go through. The last one bothers me the most. I watched my mom go through hell, and I'm so scared of what they will see.

My job has been great - I'm an engineer for heavey equipment. My surgeon thinks I'll be back at work in about 2-3 months. My dad is taking it the hardest - I think it has brought back a lot of bad memories for him. BUT, he is there for me anytime I need him.

I just want you to know you're not alone and I fully understand what you are feeling. This seems like a great site and I'm glad I have found it.

Mel

Hi Louise,
I'm only 32 and I'm electing to have a bilateral mastectomy asap as I had breast cancer in April and then found out that I am a BRCA 1 gene carrier meaning it's likely to come back. It's so scary hacing cancer at our age insn't it! Have you had your op yet? If so, what type of reconstruction did you go for. All of them sound pretty horrific. I hope yours went well and you are on the road to recovery. Any advice you can offer on the recon would be greatly appreciated. Katherine