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If you had or are going to have a mastectomy

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Re: If you had or are going to have a mastectomy

Hi Carol Lina - How are you doing? Thinking of you.💖xxx

Member

Re: If you had or are going to have a mastectomy

Thank you Carol Lina,

It sounds like you have had similar frustrations to me. I think we just have to accept that we are just one of many many people, so there are bound to be administration errors at times.

 Thank you for your good wishes about my forthcoming radiotherapy. I hope you are right! It will be fifteen sessions, Monday to Friday, but due to Christmas Day, Boxing Day and New Year's Day, it will extend to 10th January.

 They just phoned again yesterday and said they need another scan whilst I hold my breath ( as my breast cancer was left breast and it will protect my heart if I hold my breath during the radiotherapy. I had read up on this, but when they took the scan they told me to breathe normally, and then they said, as I was leaving, that they might call me back if the oncologist decided he wanted another scan with my breath held.). So they asked me to ' pop back' tomorrow for another scan. If it's anything like last time then that will be another four hours out of my day! I don't mind while I am off work, but that is why I have asked them if there is any chance of bringing the appointments forward as I really want to complete them before I go back to work. ( They have said it is really unlikely).

Best wishes

Jane xx

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Member

Re: If you had or are going to have a mastectomy

Hi Jane, that’s a shame you need to travel to have radiotherapy, but I'm glad there's a lot of people willing to take you there (these people make us feel wanted). What happened to your oncologist is irritating. If you need to see him, why have they booked your appointment when he’s not working? They did something similar to me, they first made an appointment with me a few hours before the team met to discuss the results of my MRI, and today I knew my NCB won’t be in my surgery because it will be the day she doesn’t work! The person who makes me feel a bit confident will not be with me. About dignity, since I heard the phrase “you have breast cancer”, taking off my blouse and bra don’t bother me (which would have bothered me much before, since I'm shy). I believe you’ll undergo radiotherapy pretty well, you did well with quemo (hopefully), and will do even better now ;-). When will you start? Will it be 5 days a week?
:-)
Member

Re: If you had or are going to have a mastectomy

Hi Mai, Thank you for your post. You are really good at articulating the emotions regarding mastectomy, and I always find your posts very comforting.

 

Hi Carol Lina,

Thank you for asking! It was not too bad. Unfortunately, our new radiotherapy unit in our town has been delayed in opening, and opens five days after my last radiotherapy! So it's a forty minute drive- not as bad as some and I have lots of offers of help, though I drove myself today. There was a mix up, and I was supposed to see my oncologist first, but he doesn't work there on a Monday! So I couldn't ask all the questions that I had for him. 

 There were four people in the room, including a young female student and a young man who seemed to be pottering about in the corner! I felt a bit vulnerable and exposed, as only the surgeon and my breast care nurse have seen my scar, and then here I was, lying with my arms up above my head, having measurements taken, and the tattoos placed. You certainly have to surrender your dignity, but I keep telling myself that they see this all the time.

I am anxious to get on with the next stage, but I feel so well in myself now that I hope it doesn't make me feel too tired, especially as I go back to work on 2nd January ( but mornings only until radiotherapy finishes on 10th January)


Jane xx

Member

Re: If you had or are going to have a mastectomy

Hi Jane, how was your appointment?
Community Champion

Re: If you had or are going to have a mastectomy

Janie123, you are doing really well and the fact that you are able to discuss your mastectomy is part of the healing process.  I stuck my head in the sand for a whole year!  I like your image of me galloping off into the distance.  I think that's exactly what are afraid of, metaphorically, after cancer.  We are afraid to move towards a positive horizon and risk stagnating our existence because of it.  With the equine therapy you just interact with the horse but don't ride it so its also suitable for non-riders.  I had a horse in my youth so it's possibly a place I would seek comfort as it has happy associations for me in the past.  I'm sure you'll be able to get back into running soon.  I've been running a few times since finishing treatment but prefer to just do a couple of miles nowadays as I don't want to drain my immune system. xx

Member

Re: If you had or are going to have a mastectomy

Hi Mai,

 

Thanks for your good wishes and I hope you have a wonderful Christmas with your family too. I have always been grateful for my lovely family and wide circle of friends, but goodness, these past seven months have made me appreciate them even more!

I love the imagery of you on a horse, galloping throught the countryside, with a counsellor galloping alongside! 

I always used to find running a fabulous release. Headphones on, wind in my hair, and alone with my thoughts. I have a radiotherapy planning appointment today, and I shall ask if I can start running again. It is almost five weeks, post-mastectomy.

 

Jane xx

Community Champion

Re: If you had or are going to have a mastectomy

Carol Lina, I think it would be a good idea for you to chat with the nurses on here to help you get a bit more clarity on what is happening.  xx

Community Champion

Re: If you had or are going to have a mastectomy

Janie, the best counselling I've received has been equine therapy.  It was great to be in the countryside with a horse and I had to shout for the counsellor to hear me.  That kind of forces the emotion out of you in a strange way.  I hadn't been able to talk about my surgery until recently.  I just couldnt even begin to put it into words before.  I'm sure I'll get there in the end with the decision.  My kids too will be home from Uni soon.  Glad to have been here for you and I hope you have a fabulous Christmas with your family. xx

Member

Re: If you had or are going to have a mastectomy

Pastasmissus, I'm very glad you can deal so week about being flat. You're blessed. Unfortunately it's complicated for many women. Although I think that my life is more important, I can't feel "normal" about losing any part of me. I "was made completed" and losing any part of my body is very painful to me.
Member

Re: If you had or are going to have a mastectomy

I forgot to tell you Mai that I'm sorry to here you have issues about reconstruction. Although I'm sure they'll find a good solution for you :-). I know that look at "my new shape" would be a cancer reminder to me too, so I don't want to look at that.
Member

Re: If you had or are going to have a mastectomy

Thanks Quaggie for your advices. What hard time you had, going through surgery three times :-(. I'm happy that you're feeling well(as much as possible) about this journey!
Member

Re: If you had or are going to have a mastectomy

Many thanks, Jane, for explaining what DCIS means( what I knew about it was that is still inside of the duct (not invasive tumor). Thanks for clarifying ;-)
Member

Re: If you had or are going to have a mastectomy

Hi Mai, they told me few things(something that I don't like here is that they don't give us any exam. I hate that, it's supost just to believe in doctors whiteout seeing anything? I didn't even see any picture from my MRI(and he has changed his mind TWICE after seeing the results. How can I trust?). He told me that it's estrogen positive and protein negative (although there's something else which needs to be comforted the more biopsy). He suggested using Tamoxifen for ten years :-(
Member

Re: If you had or are going to have a mastectomy

Hi Mai

Thank you for posting. I think you are right- I do feel that my trauma has been trivialised. I also feel that I have, on the whole, worked through my emotions by talking with family, friends and ladies on this forum, so I don't feel that I need counselling now, but I needed it at the time. I still have had no follow up to the survey that they sent to me, when I indicated that I was very traumatised by the mastectomy.

 I wish you luck with coming to the right decision. Thank you for the pertinent points you make. I, too,am very grateful to be alive, and I am enjoying life too. So looking forward to Christmas- children home from Uni and the house will be full- that's when I am happiest!!

Best wishes

Jane xx

Community Champion

Re: If you had or are going to have a mastectomy

pastamissus,  I can keep my mind distracted very well intellectually but I can't sugar coat what I've been through.  I think I was very detached about it early on after surgery but less so after a year.  I'm pleased that you are able to feel unemotional about it.  I'm caught in the middle of  making some big decisions at present and it can be a bit overwhelming at times. 

Member

Re: If you had or are going to have a mastectomy

I went straight for a mastectomy rather than a WLE, as my aunt has had breast cancer 4 times, and I was worried about needing further operations if the margins weren't clear with a WLE.

I think I am very odd, it didn't bother me at all losing my breasts (got it in the other one, so had second mastectomy 6 weeks later). I live in my head rather than in my body, and am a doctor, so I really didn't feel any emotions about it at all, it was just necessary.

I also didn't want any kind of reconstruction. I now have prosthetics, but am happy flat. For anyone who is also flat (even if temporarily) there is a group called flatfriends which is really good.

Community Champion

Re: If you had or are going to have a mastectomy

Carol Lina, do you have your full diagnosis?  Have they given you scan results?  Are they asking you to decide on mastectomy or lumpectomy?  If the decision is yours its usually because you are borderline.  Mine was a clean cut decision based on having an invasive and diffuse tumour.  Will you be going onto endocrine therapy (Tamoxifen or Letrazole) afterwards or are you TNBC?  xxx

Community Champion

Re: If you had or are going to have a mastectomy

Janie123, it is a tough call: caught between being grateful to be alive and traumatised by events.  When I was told I'd need an mx I said to the nurse "well there's not point in a well conserved breast on a dead body" which I still believe is true.  A satisfactory reconstruction is more about sanity than vanity so yes, the emphasis on mental wellbeing should be considered but not hurried at the expense of a better outcome from waiting a bit. Maybe, not being offered proper counselling means your trauma somehow feels trivialised and you are left to muddle along?  Just another perspective to consider.   I'm a year post-mx now and my mx has only affected how I feel about myself.  I keep it covered up all of the time (except in the bath/shower) so I dont have to think about it because I feel that it's a reminder of cancer for me.  I should develop an attitude like the "Monty Python - just a flesh wound" scene!  I have an appointment over the Xmas period for a second discussion on reconstruction.  I don't have any belly fat so a DIEP flap isn't an option.  The other complication is that I had symptoms of inflammatory breast cancer and an implant isn't usually an option after that ....... but I'm grateful to be alive and enjoying life, oh yes I am.  xxx

Member

Re: If you had or are going to have a mastectomy

You are welcome Daisydi. I have had such amazing support from this forum too. Couldn't do it without all these lovely ladies. I have been following your experiences and I really feel for you. I hope you get the answers you need, on Tuesday. Jane x