Dear Cazrosie,

Thanks so much for taking the time to reply to my post - your answer helped to reassure me. :)

I guess implants seem 'easier' but potentially more of a problem long-term. 

Were you in lots of back pain after the operation? How long did it take to subside?

Did you lose a lot of strength from the side where the muscle tissue was taken?

I have very large breasts so will need a breast reduction on the normal breast. I don't want the double worry of implants and LD Flap so will have to accept the substantial breast reduction (maybe the opportunity for some new clothes!) I seem more sure now that I will go for LD Flap method and then won't need to worry about RT either...

thanks xx

Hi Flora,

I wasn't in too much pain - I did look like I had been attacked by a shark but healed very quickly.  I was very good at doing my arm exercises but also made sure I didn't over do it. I wasn't allowed to drive for 2 weeks but was back at work as soon as I could drive again. I came home from hospital with a drain fitted but that wasn't painful - more of a hindrance. It was removed after 2 days. The day after my op I did feel pretty wiped out and sick but I think that was more the anaesthetic. I had stocked up on pain relief but didn't need it. I haven't lost any strength but did have to take it easy at the gym for at least 2/3 months - especially with arm strength exercises. I do joke that I now have one side with no back fat now!! 
I did have to have my scar reopened about 3 weeks after my initial op, as my bottom margins weren't clear but it was fine as they went in along the wound. 
Now, a year down the line, the side of my boob which has the back tissue is still numb and if I press it, feels like pins and needles but I've had no issues at all. 
When are you likely to have your op? 
Caroline x

Hey Caroline - thanks again for your detailed and reassuring reply. Your 'attacked by a shark' description made me smile - at least I will be prepared for that! :)

Did you get lymph node removal too? I will get this done too during the surgery.

My surgery will take place on 29th July. I feel scared, but I guess this is normal. 

I'm actually Scottish but live and work in Vietnam. I have been diagnosed here in a reputable International hospital. Under normal circumstances I would have immediately flown home for treatment, but the Covid 19 situation has made things extra complicated for me - I would need three flights to get back home (risky for virus transmission) and would need to leave my children behind in Vietnam without knowing when I could return (no incoming international flights). 

Vietnam has controlled Covid 19, so no worries there...

however, there are no cancer support groups here; any online groups are in Vietnamese and I can feel isolated...

so, I really appreciate this group and your response Caroline ! :)  

Oh wow!!! As if having cancer isn't hard enough!! What an amazing strong person you are!

Yes, I had lymph nodes removed during my surgery. They were tested while I was in surgery and luckily, out of the 3 nodes they removed, only 1 had micro metastises so I didn't need a full lymph node removal. 
Of course it's normal to be scared!! I was terrified! I was diagnosed a few weeks before we were due to go on holiday. My biggest fear was that we would have to cancel but I was cleared to go and had the surgery about a week after I came home. I was home the same day, after surgery. 
I am here if you need any support!! 
Caroline x

Thanks Caroline - your enthusiastic tone and honesty made me smile! :)

It has been incredibly difficult dealing with the diagnosis on the other side of the world (thanks for calling me 'strong' :) and i occasionally get weepy, occasionally pay for my grocery shopping but don't take the groceries, and yesterday I took my shopping but didn't pay! :) Just as well that I have a date for my surgery! :) i  have been told the surgery will take 6 hours approx and comprise of masectomy; LD Flap reconstruction; breast reduction; lymph node stuff. He also said I would be in hospital for one week. That sounds pretty long doesn't it? There is no bed shortage here and no 'out of care' nurse to visit, so I wonder if that's the reason...thanks for telling me you felt 'terrified' - it helped reassure me :)

I'm trying not to focus on what happens after the surgery - the lymph node stuff and treatment etc - as I find it too scary ...I'm just trying to keep my sights on the surgery. I know that you have the same type of cancer as me, so it would be good - after the surgery - to chat with you about it...:) 

I liked your determination to go on your holiday whilst waiting for surgery! :) We need these bright, happy spots during difficult times :) I'm going for a few nights too - Thursday to Sunday - to the seaside - to relax and recharge my batteries before the surgery.

I appreciate your support! xxx

Hi Flora, 

Can i ask how big your tumour is? Mine was 3.5 cm. My surgeon didn't want to do a full mastectomy but after having margins that weren't clear, she did tell me it would be the next option if they were unable to get clear margins from the 2nd op. I think that is why your op will be so long. I think I was in surgery for around 4 hours. A week in hospital might be good then, if not community support - will also mean that you will rest! If you are like me, I am terrible at that! I was out walking the dog 2 days after my op. And decided that because I couldn't drive, I went out on my bike instead!! My family and friends despaired of me!! I even went to my line manager and asked to go back to work 2 weeks early, after my second op. 
Because I was under 50 yrs of age, my tumour was sent for oncotype testing. This is when they send a sample of your tumour, to USA, where they examine your tumour to see how it would respond to chemo and chances of recurrence. Mine was a low/medium score so didn't need any chemo. My consultant also said trae lobular cancer doesn't respond brilliantly to chemo. So just had 15 sessions of RT, then tamoxifen for the next 10 yrs.

Good to hear you are having some time out - I think distraction is a brilliant thing to do. If you are busy having fun, you aren't thinking about the situation as much. I know it is there constantly and is a frightening worry but stay positive!! 
 

caroline x

Hi Flora and comiserations you are facing  mastectomy. I had mine with an immediate reconstruction done in December. Like you I did not know if I would need RT afterwards, but thankfully my sugeon found that the sentinel node was negative when he did the op. I know what you mean about a psychological struggle, My cancerouus breast was stage 2 invasive ductal carncinoma. oestrogen positive.  I was born with a chest amd  rib deformity, doctors called in funnel chest or pectus excavatum when I was growing up, It looked really odd, wonky, and the breast itself didnt grown normally. My mum always blamed the fact she had taken a  morning sickness drug like  thalidomde twice  whem pregnant, dont know if that was why, seems just to be a random thing for no eason. I sufferred horribly at school with the bulliy girls as after PE we were mareched through the showers by the teachers! My surgeon says it is now known as a rare disorder called Poland syndrome, hence my nickbame on here. Anyway, long story short, When I was 18, after many years of being poked and prodded by chest surgeons as a teenager, and having to wear a falsie prosthesis  down my bra, I got an implant operation,a saline filled silocone thing to give me a breast shape. Well  was 61 when I had my surgery, so it served me well, however he said hed have to remove it because it could be a problem if I needed radiotherapy.. and in any case it had gone hard and tight after 40 years, including active service when breastfeeding my kids, so it had to go. My new one feels a bit "ripply" and wobbly on occasikoins, imagine a hot water bottle which needs more water! My old implant wazs one of the controversial ones that many women in America sued the manufactuers about in the early 1990's, I joined in with a group action for foreign patients and was successful as the hospital could confirm what sort I had. That reminds me I must write to them and tell them it has now been removed and why.  Anyway, immediate reconstruction is no picnic, Im 7 months post op. and I had more scarrnng than expected because of getting out the old one. My old deformity is now noticeable again as he only replaced the breast tissue, not filling in the pothold underneath it. I wish he had done so, he said since that he thought about putting one in the dent and another the right side up on top of if, but Im talking to him soon and expect to hear about revision, But I have to hang on to the good news that I am managing risk of recurence on tablets, didnt need rt, didnt need chemo as such, and my oncotype analysis on the tumour shows a relatively low risk of recurrence. I spoke to someone recently who had an LD flap and when she was telling me about her return to work she was saying she found it harder than expected as her flexibility has gone, and in her healthcare job she keeps finding movements she cant do so easily or at all. I hope others who have had that experience can share ideas. and Im sure the nurses can advise too. Its such an individual thing, I hope you find an answer that works for you, wishing you all the best, youve come to the right place to ask!  

Hey Caroline,

Thanks for your helpful and informative reply. 

My tumour is 2cm. The pathology report has said 'widespread' and 'multifocal' and the Oncologist has estimated a 50% chance of recurrence without masectomy. At the moment, the Oncologist has only mentioned RT and hormone tablets (my cancer is 100% ER+). She said the same as your consultant - responds better to hormone tablets than chemo.

I guess nothing will be known for definite until the final Pathology report. Since medicine isn't an exact science, I try not to take anything for granted! :)

I've just turned 53 years old and, like you, I'm pretty active. I'll be keen to start doing exercise as soon as possible. But you're right, being in hospital will force me to take the time to recuperate which can only be a good thing (I have two teenage children who are lovely but have their own demands!)

Gosh - I hadn't even heard of Oncotype testing! I'll mention it to my consultant after the surgery. I feel like I'm quickly becoming an expert in the field of breast cancer terminology! :)

Anyway, of to meet the surgeon today and I have that familiar anxiety-ache in my stomach...but still...I'm glad things are moving forward.

Thanks again for your support, Caroline! :) xx

Dear poland19,

Thanks for writing such a detailed post and sharing your experiences.

It is sad that you had to go through such a difficult time in your teenage years re Poland syndrome. To be bullied for this condition is horrible - especially during those teenage years, but you got through it and sound like a very strong person. It is generous and kind of you to share your experiences to try to help others.

It is good news that you didn't need RT or chemo, and the chance of recurrence is low risk.

I have settled on LD Flap and feel happier that I have made an informed choice...

take care poland19 xxx