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!
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!
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
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.
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
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
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.
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
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.
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).
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.
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
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!!!
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
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?
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.
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.
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.
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'.
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
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
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.
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
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
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
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