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SURGERY OCTOBER 2018

191 REPLIES 191
Member

Re: SURGERY OCTOBER 2018

Merry chrimbo.x
Member

Re: SURGERY OCTOBER 2018

Hi LInda,

 

I started chemo at the end of June. I didn't join this forum til near the end of my chemo, but then I decided I would like to join to get advice about lumpectomy and radiation versus mastectomy. Although, I ended up having no choice and needed mastectomy and radiation!

 This forum has been invaluable. Lots of useful advice, and so many supportive women who completely 'get' how I am feeling!

I got my silicone prosthesis yesterday. It is fantastic! It looks so natural under clothes so if I have to wait a year for reconstruction I won't feel quite so bad!

 

Best wishes
Jane xx

Member

Re: SURGERY OCTOBER 2018

Jane when did you start chemo? Just wondered as May chemo peeps are planning on meeting up at some point when everyones finished treatment.
Yes hope we don't get any problems. I started moisturisiny am and pm with E45 on bad boob as they told me to start at the open evening.
I volunteered to review a book with Macmillan. I did order the one you recommended but cancelled as I will review that one first if I still want to go ahead after reading what they have sent me.
Bw,
Linda xx
Member

Re: SURGERY OCTOBER 2018

Hi Linda,

 

Thank you. That is reassuring!

Regarding work, I am doing mornings only, until 10th January, when my radiotherapy finishes. I have asked for the session to be as late in the afternoon as possible, and then I will rest in the evening, ready for work the next day. Hope we don't feel too bad after each session!

 

Best wishes

Jane xx

Member

Re: SURGERY OCTOBER 2018

Jane my surgery will have been 56 days prior to rads. I was told 6 to 8 weeks by my surgeon and when it was going to start on the 27th which would be 66 days that it wouldn't make any difference. I suugested starting work an hour earlier if I had a later appointment which I hope I will be able to manage so I don't miss as much work.
Bw,
Linda xx
Member

Re: SURGERY OCTOBER 2018

hi Linda,

 

Sorry for the delay in responding! I have been away for the weekend and only returned today. I will join the December group in a minute! I start on 18th December. My efforts to start earlier have not met with success. My main objectives to starting earlier were that I wanted to be completed by the time I return to work on 2nd January ( though I am encouraged by the fact that you are working through them), I feel ready to start as I have healed well, and finally, the guidelines state that in England the radiotherapy should start within 31 days of surgery. However, no-one seems to be concerned about this. When did you have surgery? Should I be concerned that it will have been 48 days since my surgery?

 

With best wishes
Jane xx

Member

Re: SURGERY OCTOBER 2018

Jane,

 

I start radiotherapy on the 17th. I went to an open night last night so saw the radiotherapy machine and all the behind the scenes areas. Have you joined the December radiotherapy thread? I will be working full time whilst having radiotherapy.

 

bw,

Linda

 xx

 

 

 

Member

Re: SURGERY OCTOBER 2018

Hi all,

I am looking for advice please from the ladies who have had reconstruction done, I am due surgery in jan for a single/possibility double mastectomy and have meetin with surgeons on Monday. I am thinking of asking for the DIEP flap but know is hard op and recovery🙁 How have people got in with this, any regrets? Implants seem an easier option but don’t last for ever. Any advice would be great.

Thanks

Lots ofove to you wonderful ladies 💕
Member

Re: SURGERY OCTOBER 2018

No I didnt get results from 2nd surgery but they forgot to do my anc so I will prob have to have more surgery anyway.  May have to have a mx in the end.  Glad you are clearx

Member

Re: SURGERY OCTOBER 2018

Surgeon confirmed it was all removed. Going to open night tonight in rads department.
Daisydi did you get your results?
Hope all ok.x
Member

Re: SURGERY OCTOBER 2018

Chest wall soz
Member

Re: SURGERY OCTOBER 2018

Yes breast wall Magsv
Member

Re: SURGERY OCTOBER 2018

Hi Linda - do you mean the chest wall and not breast wall? Only asking because I remember my consultant saying that mine was 'deep' so googled it.

When I over heat in the night I tend to wake up because I have a wee puddle of sweat where my cleavage should be. I'm sure I should have been born with bigger boobs. I'm 36a if I wear a very padded bra 😊xx
Member

Re: SURGERY OCTOBER 2018

Maglev my OH said I was hot again last night but that is nothing new.

I keep thinking about the oncologist saying I have residual cancer as it is hard to remove it on the breast wall. I was told by my surgeon I had a good (85  to 90 %) response to chemo. x

 

Member

Re: SURGERY OCTOBER 2018

Hi Linda - I started on Letrozole about 6 weeks ago (I think - time for me has all gone to pot since all this Breast cancer 'lark' 😜). I was diagnosed with IDC right breast and had a mastectomy and SNB on 24th Sept. Lymph nodes clear - didn't have to go through chemo or rads - had a immediate reconstruction with a tissue expander and started on Letrozole and Adcal (calcium supplement) immediately. Some side effects - feeling achy in my joints, some nausea - but nothing really major. Had a Dexa bone scan as one of the side effects of Letrozole is osteoposrosis so they were to monitor the effects of the Letrozole on my bones. Got results of dexa scan which shows I already have osteoporosis - so have been prescribed Alendronic acid ( a bisphosphonate). So all these meds are now on a repeat presciption with my GP - for the next 5 years.

It does seem 'mad' to me that I have to take one medicine to counteract the effects of another medicine - but hey ho - I just 'go with the flow' - our lives in thier hands and all that.🤦‍♀️

No worry about the dexa scan - its easy peasy compared to everything else we've been through. I'm told I'll be having a dexa bone scan yearly as they monitor everything.

xxx

Member

Re: SURGERY OCTOBER 2018

Thanks Jane and Linda. A big sigh of relief when I opened the letter today 😊
Linda- the radiotherapy machine did not bother me at all. It's completely open and nothing like the MRI machine - I found that very claustrophobic. I had the bone density scan 2 years after starting letrozole (I've read that it's recommended to have one at the start?). The procedure was even less scary than the radiotherapy. My results showed that there is some concern but it's not osteoporosis- the stage before .. can't remember what it's called? I've got vit D tablets on repeat prescription and take them twice a day. Because I wasn't tested prior to taking letrozole, I'm not sure if I had some bone density loss anyway. I'm certainly not aware of any symptoms.
After this next op I'm going to make an appt with my GP and ask to be prescribed bisofosphonates. I've read positive things about the benefits of them for those who've had primary breast cancer.
The only follow up I've had 're retrozole is when I have my annual hospital check up with a consultant. I get 3 months worth at a time on repeat prescription (prescriptions are free for everyone in Scotland- not sure if that's the same in rest of UK?).
Mags xx
Member

Re: SURGERY OCTOBER 2018

Maglev the Letrozola has not given me any side effects so far! Glad it is the same surgeon. I am going to an open night on Thursday as I want to see the radiotherapy machine beforehand. I get nervous about scans but think the bone/Dexa scan on Tuesday will be ok. Did you have one Magsv? Did you get regular follow ups about the Letrozole? I was told I would be considered for bisphosphonates but that they are just starting to do them here. I think she said the doctor will put Letrozole on repeat prescription but not sure if she will write to him. x

Member

Re: SURGERY OCTOBER 2018

Oh Mags, that is good news. You must feel a bit more relaxed, knowing it is the same surgeon. Good luck.

Also Linda, good luck to you too. Hope your radiotherapy is sooner. My planning session is this Monday. I will ask if they can bring forward the radiotherapy as I have healed really well, but I know they are busy.

Jane xx

Member

Re: SURGERY OCTOBER 2018

My letter finally arrived today! It's the same surgeon as last 2 ops and it's an afternoon slot (which I prefer because I'm a breakfast person, and can eat - lightly - on the morning of op as long as it's all finished by 7.30am).

 

Mags xx

Member

Re: SURGERY OCTOBER 2018

I'm just glad I now have a date, Linda. Although I was told by Breast Care Nurse that the letter should arrive today ...it didn't. I'm anxious to find out if its the same surgeon who did the last 2 lumpectomies - nice scars! I bought my V shaped pillow today and have ordered 2 front fastening soft bras from asda so beginning to get organised. I've also bought a couple of pairs of buttoned pjs. Just need a heart shaped pillow and some loose buttoned shirts and I think that should be me organised and can start thinking about Xmas?
How's the letrozole so far? I was dreading starting it as I'd heard so many horror stories. The only side effects I had were really sore knees and thighs in the mornings but that only lasted for a month or so then disappeared. I do tend to get really overheated in bed sometimes but have a top sheet so that I can throw the duvet off until it passes - doesn't usually last long and I pull the duvet back over and snuggle up. Worried about radiotherapy too, but only got a pink boob towards the end of 15 sessions. I think I've been luckier than some. Fingers crossed my luck lasts for the mastectomy op and after effects 🤞😊
Member

Re: SURGERY OCTOBER 2018

I have dates now Jane but as they are over 9 weeks after surgery we asked for them to start sooner so should hear next week. Asked for small tattoos too as wasn't keen on having them at all. So all set to start radiotherapy asap now.
Started Letrozole yesterday too. So far so good.
Love Linda xx
Member

Re: SURGERY OCTOBER 2018

Hi Linda,

 

Thanks for your reply. By the way, I can recommend a fab book- The complete guide to breast cancer' which came out this year. It's written by two breast cancer surgeons, who both had breast cancer and have survived. It's really informative and positive.

 

Best wishes
Jane

Member

Re: SURGERY OCTOBER 2018

No I didn't call the BCN as I am hoping to find out tomorrow but maybe I should if I don't find out. I have 20 sessions altogether including 5 which are a boost.
I asked and she said are you sure you want to know as most people don't. I knew I would regret it if I didn't. Anyway like you say it is what it is. I have thiught about it though but am sure I will forget soon.
Love Linda xx
Member

Re: SURGERY OCTOBER 2018

Hi Linda,

 

Glad you have got the date of your planning appointment. Did you phone the bcn in the end?

I was interested in your prognosis. I never want to know mine, as I find it too scary. Did you ask them or did they tell you?  My brother always says to me that I must remember it is just statistics, based on data that will be out of date, and treatments are improving all the time! So I keep holding on to that in case I inadvertently get told!!

 

Wishing you all the best

Jane xx

Member

Re: SURGERY OCTOBER 2018

I have my planning meeting tomorrow and then start radiotherapy either after Xmas in December or probably in January as they are busy.
I have a dexa scan on Tuesday and have a prescription for Letrozole which I can start straight away so maybe tonight if my OH has got it.
I was told that there is a 92% chance of living 5 years and 79% chance of living 10 years.
How do you feel Mags now you have a date for surgery?
Love Linda x
Member

Re: SURGERY OCTOBER 2018

Hi Mags

 

I know what you mean about the video! She seems delighted to be in a position to be able to have use of a knitted knocker!

 I am glad you have a date for your surgery albeit New Year's Eve! I'll be having radiotherapy that day. Not how I envisaged New Year's Eve but hey ho!!!

 

Best wishes
Jane xx

Member

Re: SURGERY OCTOBER 2018

Thanks Jane - that video is so uplifting 👍😍
Got my surgery date - 31st December! That'll be a different way to bring in the New Year 😷🥂😅
Member

Re: SURGERY OCTOBER 2018

HI Mags

 

Glad your knitted knockers arrived in time but really hope you get a date soon so you can plan.

I do know the answer to your question! The extra filling is in case you have an asymmetrical breast and you might want to put a bit more stuffing into a certain area of the knocker. Also, should you put weight on, then your natural breast would increase in size, and you can pad out the knocker so you have symmetry. There is a short video on youtube, if you google ' knitted knockers' and an American lady talks about her experience with her knitted knocker.

 

With very best wishes to you

Jane xx

Member

Re: SURGERY OCTOBER 2018

Still waiting for mastectomy op date - going to phone breast nurses tomorrow as would like to know if it's going to be this side of Christmas.
Knitted knockers arrived today Jane 😊. So nice of these ladies to take the time to do this (and the wee messages included are just lovely ❤). I've got a question though - I'm sure it's a silly one! - why is there an extra bag of filler? Is it in case there's not enough filler in there? Or is it in case some of the original filler escapes when the knitted knocker goes in the wash?
Just in case you know the answer 🤞😊xx
Member

Re: SURGERY OCTOBER 2018

Hi Linda

 

Sorry about the delay in my reply. We were away all weekend! I eventually found out about my appointments from my breast care nurse. This was after trying to find out myself, speaking with the receptionist at our new cancer centre at our local hospital, my oncologist's secretary, and the staff at the radiology centre where I will receive treatment! None of them could answer my query, but my very efficient bcn telephoned me within the hour of my leaving a message, and had the answers! So it may be worth your phoning your bcn?

 

Best wishes

Jane xx

Member

Re: SURGERY OCTOBER 2018

My appointment is 5 weeks after surgery with the oncologist. Not been told anything else yet. Who told you when the planning meeting etc will be. I would live to know. I have a list of questions to ask. Not looking forward to it tbh but just want to get it all done and dusted. It will go into January like you Jane now and probably be over Xmas and New Year.
I am still in my sports bras but may try some non wired non padded cotton ones I was wearing as only have 2 sports bras and so I have to keep washing them. I may try some padded non wired ones to see what they look like. I just hope I can find some that look ok in the long term.
Anyway xmas shopping tomorrow.
Love Linda x
Member

Re: SURGERY OCTOBER 2018

Nice to read that you have a lovely get together in Salou next May, Mags! 

Just a quick update about radiotherapy. I have been told that the planning appointment is going to be on 3rd December, then first of fifteen sessions will start on 18th December. Because of Christmas, Boxing Day and New Year's Day, it won't finish til 10th January, and I will be having it all over the Christmas period. I will ask if there is any chance of bringing it forward, as I go back to work on 2nd January. Also I have healed really well, and the guidelines are to ideally commence within 31 days of surgery ( but to delay if they have to wait for healing). If the healing is good though, I expect it will still depend on how busy they are. I did speak with the radiotherapy receptionist and she said it is unlikely I could be seen any sooner as everyone wants to be finished by Christmas if possible. Also , Linda, I did ask about going to another hospital, but she said they would have to do their own planning, and this would delay it. I will ask the oncologist as I should be seeing him next week, as I have to see him before the appointment on 3rd December.

Also, Linda, I don't personally know if you can do yoga yet, but I would have thought so.

 

Best wishes

Jane xx

Member

Re: SURGERY OCTOBER 2018

Thanks Jane! I'll definitely be ordering an aqua one for next May - the whole extended family are off to Salou for a big get together. I'm looking forward to getting the regular ones (I ordered two sizes as I've had so many bits chopped off, I vary between a 36a/36b depending on what I'm wearing). The ladies behind this idea sound wonderful 😇. Mags x
Member

Re: SURGERY OCTOBER 2018

Anyone know when I can start doing yoga? My husband thinks 2/3 months. I was going to go tonight. I can ask on Monday as I have an oncology appointmnet then otherwise. Thanks.

Member

Re: SURGERY OCTOBER 2018

Hi MagsV

 

Did you see that the Knitted Knockers website will also give you aqua knockers? They are stuffed with shower scrunchies, which you remove when you wash the knocker. I got a really nice post mastectomy tankini (brand new with tags!) off ebay this week. Only £16, and when I put my aqua knocker in, it was unbelievable!! You really couldn't tell at all. 

Apparently you can swim with the silicone prosthesis that you are fitted with six weeks after the mastectomy. However, my well-endowed friend who had a mastectomy said that hers was very heavy and seemed to float when she was swimming! So I would definitely stick with the aqua knocker.

 

Best wishes for your operation.

Jane xx

Member

Re: SURGERY OCTOBER 2018

Hi Feenix,
Thanks for all the valuable advice - much appreciated 👍. I've sent away for a knitted knocker and have joined the Flat Friends closed group (they've been extremely welcoming!).
I'll have a look in the May group chat as well and look for hints.
Mags xx
Member

Re: SURGERY OCTOBER 2018

Thanks for your messages everyone👍. I've been reading posts but haven't added anything for a while as I'm still waiting for my mastectomy op letter. Fingers crossed it arrives soon. Looks like I'll need to join the December....or January... surgery group as well 😊
Member

Re: SURGERY OCTOBER 2018

Hi LInda,

 

Thanks for your message. I am doing well. Generally feeling positive. I am seeing my oncologist within two weeks of my review last Thursday, so any time soon, I hope. No letter yet!

I think I am healing well so I hope my radiotherapy is quite soon. I will ask the oncologist if I can start it sooner than they anticipated at the review. They said there would be a planning stage after the oncologist appointment and it should start two weeks after that, but if I have healed enough then the sooner the better.

I will also ask him about the year's wait for surgery. If it is the waiting list then I definitely will ask about going to another hospital. The surgeon who did my mastectomy was from another hospital in any case, as he was a locum, as the surgeon I first saw on diagnosis was on maternity leave. If there are legitimate reasons for the delay, eg better outcomes after longer healing, then I would listen to the evidence, but I think it is hard to move forward until I feel 'restored'.


Best wishes
Jane xx

Member

Re: SURGERY OCTOBER 2018

Jane thanks for your last message. I am glad I have helped. I feel the same as I feel lopsided as 1 side is higher as it has been lifted. My husband says it is not noticeable. I know I should be glad that all the cancer was removed. I am keen to get the other side done asap. When is your radiotherapy? I would make enquiries privately to see when they say you could have it done. Could you get it done on the NHS but at another hospital sooner maybe? How are you getting on?

Love Linda x

Member

Re: SURGERY OCTOBER 2018

Hi Margaret.vass.... I’m from the May surgery thread..there are a few of us on there who haven’t had recon. Just popped on to say hi. I had a mastectomy, no recon, August. I “looked” as soon as I was awake in recovery. I had a dressing on but I know this isn’t always so. I used paracetamol and ibuprofen regularly for the first few days then as I needed them.  I had a drain in overnight only...just tied it to my pj bottoms...had to remember though when going to loo!!!  This was my third op, like yourself, and I found I recovered really well and I was out and about my first post op day. I did have a seroma which was relatively small but it was drained a couple of times. After about 5 weeks I noticed I had cording. I was referred to physio and I have extra stretching exercises and massage to do.  I’ve never felt self conscious and I also go out flat. I had front fastening bra given to me at my pre op and a couple from Asda online range (I’ve not seen them there lately though...you may find the same type on amazon). I’ve also got a few Peacock pull on bralets..they are £5 and have a pocket you can put a softie/KK in...Asda do similar. I did the usual post op exercises, which I still do twice a day. I started gentle massage after I was well healed, 4 weeks.  I’ve got a silicone prosthetic which is good but I also use my softie/KK as well as going flat. I’m also a member of the closed flat friends group... you’ll find it’s a very supportive. They also have meet ups. Hope you get your surgery date soon. If you want to ask anything, please do so.

best wishes xx

Member

Re: SURGERY OCTOBER 2018

Thanks Janie- A bralet sounds good. The pull over the head type sounds comfortable but do they make front fastening ones as well I wonder?
The excercises sound like they're just the same as the ones I did for last 2 ops - thanks 😊
Linda - I phoned the BCN with my decision last Monday and she said she'd arrange dates etc. Hopefully I'll get an op date soon 👍😊
Member

Re: SURGERY OCTOBER 2018

Hi Linda,

 

My bras were not padded, but they held their shape quite well, even when I took my knitted knocker out ( unless I pressed on it when obviously it collapsed in on the side where I had the mastectomy).

 

I will speak with the oncologist about the time til reconstruction. You may well be right, that it is because they are busy. But again, I feel that the psychological aspect should be considered. As I stated in another post, I got one phone call the day after the mastectomy, and I said I was really traumatised, and I have had no follow up phone calls since. I have come to terms with it because of the amazing support from the wonderful ladies on this forum, including you, and from my fabulous family and friends who have really listened to me and sympathised. However, I really feel that I need this reconstruction as soon as healing would allow, and it will be so disappointing if I have to wait so long, unless I can afford it privately. It was enough to come to terms with not being allowed a temporary implant or expander after the mastectomy, when I know if I were under the care of a different hospital this may well have been possible.

 

Best wishes

Jane xx

Member

Re: SURGERY OCTOBER 2018

Maglev When is your op? X

Member

Re: SURGERY OCTOBER 2018

Jane I have 2 sports bras from m and s and also I wore bras with no underside in the summer as they were cotton rich from m and s as I had a rash under my blobs which has reappeared. I think they will be fine. Are the bras you got padded as that hides the lopsidedness?

I expect it is 12 months as they are busy so if you went private you could get it done sooner maybe even with the same surgeon. I think my surgeon said 2 months then 3 months after radiotherapy ends.

Love Linda xxx

Member

Re: SURGERY OCTOBER 2018

Hi LInda,
I will ask why a year. I did say to the bcn on Thursday, ' Can I have my breast construction in six months, as it is usually 6-12 months isn't it?' and she replied that it would be 12 months but I could book to discuss it all before that. I don't want to wait any longer than I have to!!
Have you tried the post-surgery bras from M and S? I got some really comfortable ones- two for £30 then vat was taken off. I ordered them online. There is no wiring.
I am sure no-one can notice. How often did you scrutinise ladies' breasts before you got breast cancer?! We just didn't, did we, but now I have to say, I notice breasts more now!!!
Love Jane xxx

Member

Re: SURGERY OCTOBER 2018

Hi Margaret,

A bralet ( I think that is the correct name) can be found with all the other bras at Peacocks. I advise Peacocks as it is cheap and the bralets are just really for when you are healing or to wear in bed. They have some stretch in them, there is no clasp at the back, so they just slip over your head, and stretch comfortably. There is no proper cup like a bra has, so nothing rubs. They are usually between £5 to £10.

Also, I expect the exercises are the same. The pamphlet was in the breast resourses pack and there are week one exercises, with shoulder shrugs, lifting arms but not above the head, then week two, when the arm is moved up the wall etc. I am sure they will be the same.

Best of luck to you

Jane xxx

Member

Re: SURGERY OCTOBER 2018

Jane my letter says he will see me approx 3 months after completion of radiotherapy. Anyway I would ask why they say a year as I was told 6 months but to check with the surgeon who does reconstruction how busy she was. Anyway I guess for me that is April which is 6 months after surgery. I will get radiotherapy dates next week hopefully.
I tried to wear an old padded bra for work but it hurt so am wearing sports bras. Maybe it is too soon to wear an underwired bra. I hope I can wear them again as it makes it less obvious that 1 side has been lifted but people I have asked say it is not obvious. Mmm.
Love Linda x
Member

Re: SURGERY OCTOBER 2018

Thanks for the advice Jamie 👍is a bralet a particular type of bra? I wonder if the excercises are the same as the ones I have for after the recent lumpectomy? The BCN at my hospital did mention that they don't use drains routinely here either. xx
Member

Re: SURGERY OCTOBER 2018

Thank you, Margaret, for your good wishes.

 The knitted knockers are fabulous. No-one can tell which is the ' missing breast when I am using it.

 I would advise following all the exercises that are recommended from the day after surgery at the frequency suggested. It really helped with regainng my range of arm movements. 

I found using a cheap bralet from Peacocks in bed at night , with a knitted knocker, very comfortable, and made the wound feel protected.

I respect your decision to stay 'flat'. I was really really traumatised at the thought of waking from the anaesthetic with no implant/ reconstruction. I didn't want to look at it, but actually, once I removed the dressing, I felt much calmer and accepting of the appearance.

The operation was two weeks ago,and the breast cancer nurse advised using bio-oil on the scar from today. I have some seroma ( they don't use drains at my hospital) and she advised if I did too much exercise of the arm on the affected side it can encourage seroma ( fluid) build-up 

Best of luck with the operation

Jane xx

 

Member

Re: SURGERY OCTOBER 2018

So happy to be reading about the positive results Janie 😊
I've joined the Facebook flat friends closed group as have decided to go flat after my upcoming mastectomy. I've also been preparing for things post surgery by ordering some knitted knockers .. (plus need to go shopping for a front fastening bra, v shaped pillow, drain bag, buttoned pj tops etc which I understand will be useful?). I'm very grateful to the people on here who share these practical ideas. Any thing else I should be aware of before the dreaded op? x