How are you? Hope you are healing well, have you got a date for your radiotherapy to start?
I start chemotherapy tomorrow, so there’s been a lot of organising to try and prepare as much as I can before it all gets going.
I’m still feeling quite calm about it all, though obviously very nervous about how bad the side effects are going to be for me. The range of what can happen is very broad and no one can tell how anyone is going to react so I’m trying not to think about it too much and just wait and see.
I went wig shopping at the weekend which was very funny, Who knew there were so many options !! I’ve got one that’s pretty similar to my own style but just a shade darker, more like my natural colour actually because I usually dye mine. There’s a chance I won’t need it as I’m cold capping, but better to be safe than sorry
How are you feeling about your radiotherapy? I’m keeping my fingers crossed that it won’t be too bad for you.
Are you managing to get any Christmas preparations done amongst all this btw? I sometimes find it hard to think that real lie is going on at the same time that we’re trying to deal with all this.
Hi Crystal, lovely to hear from you and to know you are ok.
I start my radiotherapy on Wed and finish on 29th Dec with a 4 day break for Christmas. I think I am feeling a bit like you - nervous of how it will affect me! I keep thinking I just have to get on with it!!
All week the feeling of ‘why am I having this’ has been running round in my head but I know it is preventative and just have to stay rational. I don’t cope well with tiredness and not being able to get on with things. All of my sessions are at 9am so I keep thinking I can come home and sleep if I need to and get up for the kids coming in from school
I am fine in myself and benefitting from being off work and not having to run round like a headless chcken! I am planning to watch lots of Christmas movies!
I will be thinking of you tomorrow. How often do you have to go and for how long? Let me know how you are getting on and I’ll keep you in my prayers xxx
Hi Coralie, I had a WLE and had very little pain but did get more pain a week to 2 weeks after my op. My nurse told me it was the nerves recovering. They also gave me a bra in the hospital that really helped. It was front fastening. Ask if you might have one. I also had a 2nd op and my breat is flat at the front although I do still have my nipple - it is numb though! The look of it doesn’t bother me though - upto now anyway. I have been told it may shrink and harden after radiotherapy too. Hope you heal well and don’t have too much pain xx
Hi Ali49. I had my WLE 2 weeks ago but today got the results there was still more DCIS and they didn’t get clear margins. The consultant today was very matter of fact and said we can do the shave on 30th December. Or you can just have a mastectomy and be done with it. The previous consultant said a mastectomy was overkill. Now I’m upset and confused. They didn’t look at my wound today either so I took my steristrips off myself tonight. Felt the clinic was chaos today.
Oh Coralie I am so sorry that you were treated like that today. Did they get any clear margins? If they think the shave is worth doing then it must be worth a try but you need the facts so you can decide what you want to do. They told me they had 3 clear margins but when I went for my cavity shave the surgeon told me it was actually 2 as the margin to my skin was not clear. They then achieved the other 2 clear margins but it was only half a mm to my skin but that was fine. Did someone go with you today? If I were you Coralie, I would call your BCN tomorrow and ask if you can call in to speak to her and have your wound checked. Before my 2nd surgery, when I was feeling low, I rang and asked my BCN was it necessary and could I skip it and go straight to radiotherapy. She went away and spoke to my consultant, who then spoke to the oncologist with my questions. My BCN the called me back to say no it was definitely necessary and gave me great reassurance. You need them to clarify things and to give you advice and reassurance. Call tomorrow and let me know how you get on. Sending you hugs Coralie xxx
Ah thankyou Ali49. I do feel low and now I can’t remember what he said about clear margins, just that he didn’t get complete clear margins. I was on my own this time because I felt so positive. I knew something was wrong when I saw my consultant leave at 12. He saw me but put his head down. They were totally stretched today.if they go in again will it be more painful as well
It was less painful 2nd time round Coralie and I was not as tired or zoned as the anaesthetic was lighter. I had my op at 3 and came home at 7. However I definitely think you need to chat to your BCN and have things clarified. You have coped with everything well up 9
Well up to now and I honestly felt just like you when they said I needed the 2nd op! But the positive for you, like me, is that it is all DCIS. To make the choice between cavity shave or mastectomy though you need more facts, help and advice.
Yes I was so positively as it was low grade DCIS with no invasive cancer but it was the sledge hammer delivery that upset me. I was there from 11 till 2.38 and by then was stressed over my autistic son coming home from school and me not being there. I called nurse and consultant this morning who called me back and explained better. And apologised for not looking at wound ect. Any way my consultant is going do the operation now so I’m more reassured of the cavity shave.
That’s good news Coralie. It is so much easier when you have confidence in your surgeon. Hope you’re son was ok. I am a teacher in a school for young people with h8gh end Autism so I appreciate how this must be adding to your stress. Let’s hope the cavity shave does the trick for you. Let me know how you get on xc
Hi, I do think post often but regularly read! I needed a mastectomy for mainly intermediate dcis as clear margins weren’t achieved. On pathology, the dcis was widespread over 10cm so mastectomy was definitely the correct treatment for me. I was able to have immediate reconstruction which I think helped me psychologically.
If you require or decide to have a mastectomy, although it sounds frightening, it really isn’t as bad as I expected. I’m 6 months the on from my op now and doing most things I did before.
I had a simple reconstruction using an implant which was attached under the chest muscle. The op went well and I felt really good quickly. However, I did develop an infection 5 weeks later. I needed to have the implant exchanged, but since then all has been well xxxx
Thankyou for replying Princess. How long did it take for you to recover and get on normaly? How long will your implant last? And what time of implant did you use? Sorry for all questions but on 9th i may have to make this desision.big hugs
Please don’t apologise about the questions! I have a silicone implant, it’s not a smooth one so there is less likelihood of capsular contracture. I think they last I definitely now, only needing exchange if there is a problem.
I found the recovery easy, too easy on times as thee is then the tendency to do too much! My husband took 2 weeks off work, after that I was able to do the school run (we walk though not drive). I didn’t drive for around 8 weeks but this is because it was my left side and I didn’t feel happy changing gears!
Hi everyone. I got my results yesterday. I wanted to see my consultant who did the operation, Petrious, and asked for him. There for couple of hours so asked where I was on the list. Suddenly the nurse comes out and asks if it was possible to see another consultant as Petrious didn’t have access to the masectomy list???so I figured I’m gonna get the dreaded news about masectomy. I went in for the operation thinking I needed 2 clear margins as east and west were supposed to be clear but the results were that Low DCIS and some intermediate DCIS has been found. I’m gutted because my scar is so neat, shape fine and I’ve completely healed. I’m being refered to St Thomas now as they have plastic surgeons for microsurgery for reconstruction. I feel a bit negative having to have gone through 3 operation so to still resuly in a masectomy. My gut in sting was a masectomy. I’d like to hear from everyone who has had a reconstruction and find out about their experiences thanks x
Sorry you didn’t get the results you hoped for. My mastectomy was my 4th op in 4 months, so I understand how gutting it feels.
I went for the simplest reconstruction with implant as I just wanted the easiest recovery, that didn’t work out as 5 weeks later I had an infection and needed a 5th operation to have the implant exchanged! All is well now though and I’m happy with how everything looks. I still have no nipple and am yet to decide what to go about it! Xxx
