Hello everyone
I live in Lincoln. Saw my surgeon on Thursday regarding reconstruction. Not sure if he was trying to be kind to me by telling me of what a big operation it is coupled with some of the problems associated with it, or if he was trying to fob me off.
Anyway I dug my heels in and made it very plain it was what I wanted. Looks like I’m going to see Mr. Varma in Leicester - not sure when. Anyone had any experience of this gentleman and Leicester???
Love
Lynda xx
Hi Lynda
Your surgeon has a duty of care to point out these things to you, to enable you to make an informed choice to proceed with surgery. He is right, it is a big operation and any surgery carries risks.
You sound enthusiastic and good luck. I have had bi-lat recon and I am very pleased I did it.
You may want to mention the name of your surgeon in your thread name which may catch peoples eye, anyway, at least I have bumped it up for you.
Jx.
Hello
Many thanks for your comments. Yes I am enthusiastic and I rather wanted my surgeon to be the same!!, but I take on board what you have said. I’m not sure what a bi-lat recon is but I hope everything goes well with you. Everyone I have spoken to who has had reconstructive surgery is very positive.
I think perhaps he was a bit taken aback about how positive and enthusiastic I was. But I’ve wanted this since last November when I had my mastectomy. I don’t feel complete, a freak, and I want to look normal.
Love
Lynda xx
Hi Lynda
Bi lat is short for bi lateral, meaning both sides. It took me ages to get used to all the abbreviations used on here…and I am a nurse! It makes me think twice about shortenning things now.
I think your surgeon is being very sensible and he wants to make sure you are fully prepared and aware before you go ahead. If you went ahead and then had a complication you would have every right to complain to him that you did not have a clue it could possibly happen.
I know exactly what you mean about wanting to look normal. Yeasterday I went to Bluewater and got fitted for my first pretty bra in ages. I was as excited as a child with a new pair of shoes and asked the shop assisstant if I could keep it on. I then spent the rest of the day walking round the shops having a quick peep down my top every now and again.
Good luck with everything and I hope you do not have to wait too long for your surgery. Keep us posted.
Jackie x
Hi - does a surgeon really have a duty of care to point out the risks and enable one to make an informed choice?
One surgeon that dealt with me, after I’d had my m-op, said in an offhand way, “oh don’t worry you can have a reconstruction”. Like, go on, it’s easy. He also said, when I said I had heard that tamoxifen could cause womb cancer and was worried about it, with a dismissive wave of the hand, “Oh we can cure that” (like it was like a minor plumbing job with no consequences for me). He also said, when I asked other questions, “Let us do the worrying for you” and declined to answer my questions. I came away with unanswered questions. Thank god for BCC Ask the nurse.
Do you think I could have him for failing to do his job properly?
Anyway - BJK it sounds to me that your surgeon is doing the right thing by trying to make sure you don’t rush into anything too hastily. I am very sorry if I am getting the tone wrong and speaking out of turn, but I feel I absolutely have to say: the results of reconstructive surgery may be less than you are hoping for, and it might help if you look at lots of photos and do some internet research on the wide variety of procedures, and their pitfalls, to know what you are getting into - only you can decide how much it is going to cost you (not money, but personally, emotionally, physically) and whether it is worth it for you.
I am in process of investigating it for myself, and finding it a bit of a minefield. Please accept my apologies if I am putting my big feet in where not wanted.
Hi BJK
I had a DIEP flap reconstruction 2 weeks ago (the type where they use your tummy fat to create a new boob). It was a long op (6 hours), I was in bed for 3 days with drains, drips and a catheter and stayed in hosp for a week. BUT…it was worth it cos I now have a really flat tummy and a wonderful new boob. The recovery time is about 2 months but I feel fine-tummy is the really sore area. Not sure what type of recon you are having done? My surgeon ran through the pros and cons too-you have to sign a consent form listing everything that could go wrong too.
Good luck!
Love Gill x
Hi Lynda
Sorry I can’t add anything to your questions on reconstruction but I noticed you are in Lincoln. I live near Grantham and am currently having radiotherapy at Lincoln County.
We may have the same Consultant???
Just wanted to say that if you need a friend locally …let me know!
Totty x
Hi Lynda,
I too had a mastectomy in November and am finding a general reluctance from the BC team in getting even an appointment to discuss this with them. I had been told that I would have an appt in August but still have not heard anything.
Like you I will never feel human again until I have some confidence in the way I look. This is made worse because my scar and the surrounding area is so very lumpy and ugly.
On the one occasion I mentioned it to my onc. [brilliant ,I think ,but not a people person] he told me how patients die in operations…full stop.
What does make me angry is that I was never told the consequences of any of the treatment that I have had, even though I ask for honesty.
Mastectomy…scar, ugly and pulling, lumpy, hard and uncomfortable.
Hickman line…three scars on the cleavage of other breast plus one scar under collar bone [don’t know why I was cut there]
Steroids…induced diabetes now have to inject 4 times a day.
For goodness sake give me a break!
Margaret
Now I have put the above into words I feel so bl…dy angry I could spit!!!
Good Evening Ladies!
Many thanks for all your comments - and no - no one has put their foot in it. I value all your comments. At least you are talking and listening to me about reconstruction, which is more than I got last week.
When I started out on this nightmare last October my surgeon and b.c. nurses all made reconstruction sound like a matter of course - it was not a problem. But now it comes to the crunch and I want to talk about reconstruction its like “whoa hold on a minute” - now it is a problem. I know if I had not brought the subject up no one would have talked to me about it. I feel like I am doing all the work. I know reconstruction is not going to be a picnic but I want to see something there where my breast used to be.
Hello Totty
My Consultant is Mr. Jibril, although I have never seen him. I have only seen Mr. Nair. My Oncologist is Mr. Screenivasen and I am seeing him next Friday. I hope you are getting on OK with radiotherapy. I was very lucky and sailed though it, but I do know some ladies who had bad side effects. It must be a trek for you every day travelling from Grantham to Lincoln. I just nipped up on the bus.
Yes it would be nice to have a local friend. I made some friends at chemo and stupidly didn’t get their phone numbers.
Please let me know how you get on.
Margaret - I am sorry you are having such a struggle + a rough time as well. My surgeon keeps telling me that I “should” be alright. I don’t find this very reassuring! As a matter of interest where did you have your surgery?? I think the problem with consultants/surgeons etc. etc. etc. is communication - they don’t know how to do it. My oncologist is not a people person. We are on totally different wavelengths!
Please let me know how you get on with your battle and don’t worry I also feel like you at times!!!
Love to all of you - many thanks.
Lynda xx
Hi Lynda,
hope you get the op you want. Its your body and you know what you want/need. I was lucky and able to have imediate reconstruction. I had the lat dorsi one, (muscle and skin from back is tunnelled to front). It was very painful but I’m healed up now just a few nips and tucks needed. It means alot phychologically to look down and see a boob where it should be and I have even started to forget about it occasionally.
Neither of my surgeons have had good people skills although in surgery they did the business. Thank god for my breast care nurse at ormskirk and breast reconstrution nurse at whiston.
Good luck Diane x
Hi Diane
Many thanks for your comments. Yeah know what you mean about looking down and seeing something there. I just think I look like a freak. Not much hair, one boob. I find it peculiar that these clever people don’t know how to communicate with us - can’t understand it.
Hope you go on OK and hopefully I’ll soon have some good news!
Love
Lynda xx
Hello Sarah
Sorry to be so inquisitive but did you discuss a partial reconstruction with Mr. Modi? or Sreeni?
Hope you get on OK with the remainder of your radiotherapy treatment. Are you going onto medication after radiotherapy? I am currently taking Arimidex.
I am seeing Sreeni at 10.00 a.m. on Friday at Oncology are you up here for your radiotherapy somewhere around that time or is it another 8.00 a.m. job?
Yes please let me have your phone no. and yes, perhaps we could meet up. I get more sense out of other patients than I do the so called “professionals”!!!
Love
Lynda xx
Hello Sarah
Many thanks for your phone no. Poor you a real menopause is bad enough but a false one - how awful!!! Still if taking the medication means you can have that baby it will be worth it!
I saw Sreeni this morning and he was full of the joys of spring. He hadn’t got the results of my dexa scan but said that if there was some medication I needed he would write to my doctor, but because I was “young” - I’m 57! - he didn’t think there would be a problem! Told him that my finger ends and toes were still a bit numb, this is due to the Docetaxel - the chemo I had. He told that that it might get better, but it might not! But he was very positive about reconstruction, so that was something. He gets to have the pleasure of seeing me again on 31st October.
I went to the clinic this morning with a male friend who was diagnosed with prostate cancer and had radiotherapy. One of the radiologists called Sandy came to have a few words with us. I think she works on LN1. I was on LN3 but did get to see her once. How about you which machine are you on?
Have a good weekend.
Love
Lynda xx
Hi Lynda,
Have you still no news about your reconstruction? I had to see my doctor’s nurse Tuesday and got very upset because I have found another lump and the onc had found a further one yet no appointment had turned up for tests. She was great. Rang the hospital got me an appt. and told them that she was very worried about how I was coping and they must do something about a reconstruction.
So August 14th is my appt day but of course I expect the chat will be about the new lump rather than a new boob. But at least I can plead my case.
My treatment is at Northampton Hospital and they have a plastic surgeon on site.
Margaret
Hello Margaret
I saw my surgeon on 24th August who, after a struggle, said he would write to Mr. Varma at Leicester. I tried to push as to what happens next - but all he kept mumbling, and he got quite agitated, was that he would have to write to Mr. Varma. So that was that. Don’t know how long it will take for him to write to Mr. Varma, or how long it will take for Mr. Varma to get his act together. Don’t know if Mr. Varma will get in touch with me or what will happen - wonderful isn’t it??!!
Of course you are upset about finding a lump, what are they playing at?? Pleased your doctor’s nurse had got her head on and acted promptly, and got a result!! Yes, even if they want to talk about the new lump, plead your case and dig your heels in - don’t be put off. I hope you get a result. Let me know how you get on.
It’s pointless me telling you not to worry and all that crap. I would be going hairless (if I had any!!) too!!
Best of luck, lots of hugs and best wishes.
Love
Lynda xx
Hi Lynda
Now I’m fumbling in the dark here [my memory!] but while reading your post I recalled a previous conversation with my breast care nurse. I had been asking her if I could be put on a waiting list to see the plastic surgeon to avoid a long wait once I was ready for reconstruction. She definitely said that there was a defined time scale to this and that I should not be thinking it would take months.
Now I am wondering what a ‘defined time scale’ means whether it is applied just in my hospital context or whether it is a code of good practice throughout the NHS.
I am going to try and find out as it might prove helpful.
Ooooh I can feel the stirrings of the old positive [a little radical] me. How exciting!
Margaret
Hi Margaret
I understood that reconstuction couldn’t take place until 6 months after radiotherapy. As far as I’m concerned I’m happy with that (it will be December in my case), but surely we can see someone in the meantime and get things moving. I don’t see any point in me waiting until December and then start chivving for reconstruction, when I know what I want.
Now I find your “defined time scale” very interesting. When I asked in the past about a timescale I was told by a breast cancer support worker that it would be when it could be fitted in! I was a bit taken aback at that, but she then went on to say that it would be a matter of months. Having said that I haven’t seen the chief man yet so it could well be years! Can’t say I’ve seen anything written down with regard to a time scale, which is odd as there’s plenty of time scales for other stuff. I think we need to investigate further!!
Good on you get the old fighting spirit back. I’ll see what I can find out my end.
Love
Lynda xx