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Puzzling and worrying new information post mx and recon

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Re: Puzzling and worrying new information post mx and recon

Hi Lizdeb
I am so pleased that you have got answers to your questions. Now you can concentrate onnyour recovery and your life ahead.
xx
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Re: Puzzling and worrying new information post mx and recon

Histology basically confirms that mastectomy was the right route to take as there was background adenosis with abundant benign microcalcification - which to my mind means that there was the likelihood of further carcinoma in future so better out 🙂
Thank you all again for listening and replying 🙂
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Re: Puzzling and worrying new information post mx and recon

Hi all

I spoke to the BCN today - had to do it on the phone as she is not in the clinic tomorrow. She basically said what Sheila said (thanks for posting Sheila - I didn't get notified of your post or I would have replied sooner!).

The BCN pointed out that the MRI showed a "suspicious area" which proved to be non-cancerous but actually the histology which she read out to me said something interesting which indicates that probably a mx was justified. She is printing the histology out for me and I will hopefully pick it up tomorrow when I go to the Dressings Clinic. 🙂 🙂

The BCN also said that my peace of mind was very important and that if I would like to talk to a consultant about it then to let her know and she will book me an appointment 🙂 - she suggest I think about it for a bit and see if I still need more closure. I probably won't see the consultant as they will probably not say anything more than I already know. It is nice to know that I could see a consultant if I wanted to 🙂

So all in all I am feeling much better about things but I will let you know what the histology says 🙂

Thank you all very much for your support it really is appreciated 🙂 🙂
Liz xxxx
sheil
Member

Re: Puzzling and worrying new information post mx and recon

Hi Lizdeb
Going back to your early question about the MRI not tying up with post-op findings. I had an MRI after they found 2 areas of ILC, one each side. The MRI located both of these, plus another 'highly suspicious' area. I then found out that to be certain that this 3rd spot was cancer I would have to have an MRI-guided biopsy, only done at that time by one health board in Scotland, and I think, only one person was qualified to do this. So off to Aberdeen I trekked, and result was that this 3rd spot was not malignant.
I assume MRI-guided biopsies are still not widely available, and me insisting on this did delay the start of my treatment - my surgery was 3 months after diagnosis. I was recommended a double mastectomy but as my nodes were clear I decided I'd keep them for a bit.
I am guessing that your mastectomy decision was based on the findings of the MRI 'probably' being cancer, as my recommendations were. MRI's have high rates of false-positives, but only way to be sure is to go for the biospy. They also don't show up everything either as a small 3mm additional cancer was found in the margin of one of the other areas.
This whole thing has made me realise there's an awful lot of uncertainty in this game, and a lot of decisions made on basis of tests which are never 100% reliable.
Good luck with it all.
Sheila

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Re: Puzzling and worrying new information post mx and recon

Hi Lizdeb,
I hope you get some answers from your BCN that help you cope with the reality of where you are now. I think that you may find that a lot of the decisions that we think are made on purely medical grounds often boil down to the preferences of individual surgeons/oncologist/other specialists. In my case I saw two surgeons pre op; the first said I needed a WLE and could have an immediate reconstruction but the second , a week later and when they knew the grade and stage, said I needed a mx and was not suitable for immediate reconstruction. That was in March 2011, I was very compliant and did as I was told without asking many questions. (both OH and I were too shocked to do anything else)
It was only later during my chemo when I spoke to other women and followed that up with questions to my BCN that I realised that it was not as straight forward as not being suitable and that it was the consultants opinion rather than absolute fact.
The reason I am telling you this rather long story is because I then went through a whole range of emotions similar to the ones you are now experiencing. I felt angry, upset and really let down by everyone. Like Sascha I struggle with my prostheses and am in fact horrified that in 2012 they are still of such poor design. However now that my chemo and rads have finished and I am back at work I have been able to be more positive about the situation. The Consultant did what he thought was right and I am still alive. As time passes I have found it easier to accept and can now reflect on the positives; I will a have a reconstruction later this year and will go into that surgery healthy, strong and on my own terms.
I hope you get the answers you are looking for that will help you make peace with your situation but be warned it will take time!
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Re: Puzzling and worrying new information post mx and recon

Thanks RevCat 🙂
My PS Dressings nurses are great too 🙂 I have to go in every week at the moment as my wounds need their TLC 🙂
Nice to see your smile 🙂
RevCat
Member

Re: Puzzling and worrying new information post mx and recon

Great idea from OH Liz, and it will give you time to formulate and list the questions you want to ask.

As to putting the letter in a file and forgetting it.... only once that's the right thing for you to do, which will be AFTER you have some answers.

Hope all is well for you on Thursday... I found the nurses at my dressing clinic were lovely, down to earth, practical and very caring.
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Re: Puzzling and worrying new information post mx and recon

The OH has just had a brainwave!
Go and talk to the BCN on Thursday when I go in for my Dressings Clinic - I have just emailed the nurse to see if she can fit me in for a 5 minute chat.
Of course what I should do is put the letter in a file and forget it!
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Re: Puzzling and worrying new information post mx and recon

That's ok Sascha - sorry if I seemed a bit off - I was a bit upset and was looking for sympathy but sometimes tough love is good too 🙂
Just goes to show that it is CANCER and that is not easy for ANYone!! 🙂
Sascha
Member

Re: Puzzling and worrying new information post mx and recon

Sorry Lizdeb - I did not mean to seem unsympathetic, or to minimise your upset, i am glad you found some good support on here.....I don´t think any surgeon would do a mastectomy unless it was essential as they know how traumatic it is but I feel very told off now! I am having a bad day.......
Good luck with getting answers...

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Re: Puzzling and worrying new information post mx and recon

Hi Rattlesand RevCat
Thank you both for your moral support and understanding - it is great to have and much appreciated!
Ooops now the waterworks have started!
I am sorry to hear that you cannot have a reconstruction after your first failed Rattles - I deeply sympathise.
I will do what you both say and find out what that letter was about and then put it behind me and concentrate on living life to the full 🙂
Thanks again
HUGS to both
Liz xx
RevCat
Member

Re: Puzzling and worrying new information post mx and recon

Lizdeb, a reconstruction is a massive thing to adjust too... I am now nearly eighteen months on from mine and although it's great and I'm really pleased with it, it has had its own impact on my life, so never under-estimate what you've been through.

And whilst it is true that maybe some of us are ostensibly 'luckier' than others, we have all had to face cancer... no use comparing ourselves to other people or feeling guilty about how we feel, our own authrntic experience is exactly that, ours and authentic.
Just do what you need to do to get resolution on your questions, and then concentrate on living life to the full again. No guilt trips allowed (which is why the 'Benchland' thread was invented!)
Rattles
Member

Re: Puzzling and worrying new information post mx and recon

Hi Lizdeb,
I have little to offer to help in answering your question but wanted to offer some moral support.
I can only imagine your horror at reading this letter land the possibility that you had been through something that was not necessary. Speaking as someone whose reconstruction has just failed and has no hope of another, there is always someone worse off, but that does not, in my opinion anyway, wipe out our own pain and suffering. You don't need me to tell you that you wont get any closure until this is sorted. I would be doing more than ringing the BCN if I were you! It does not inspire confidence and confidence in your treating team is hugely important.
I just hope all this will not undermine your recovery.
Good luck, and if you can let us know how you get on.
Rattles, xx

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Re: Puzzling and worrying new information post mx and recon

The grass is always greener and all that!!
But yes you are probably right I am better off as I doubt if I would have the courage to go for a later reconstruction and as my OH points out I would hate to be lop-sided!
Thanks for making me put things in perspective 🙂
Wishing you all the best too 🙂 - can you draw funny faces on the prostheses to make them seem less ugly?
Liz x
Sascha
Member

Re: Puzzling and worrying new information post mx and recon

I don´t know to be honest, but its a long way off and it would mean a reduction of the one I have left, part of me toys with the idea of losing that one too just to be even as I feel sooo unbalanced and odd.
I think you are right to be careful that no one bumps in to you, not easy though...

Sorry I did not mean to come across as critical of you, of course its a huge adjustment as a re-con is NOT the same as your old breast but I would so much prefer to be in your place than mine.....

Wishing you all the best

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Re: Puzzling and worrying new information post mx and recon

Well that puts me in my place!
I am still struggling with the going out on my own though - I did it once and was scared the entire time that someone would bump into me and do me some damage! However that will dissipate with time 🙂
Are you going to be offered a reconstruction ever Sascha?
Sascha
Member

Re: Puzzling and worrying new information post mx and recon

I would love to be in your shoes having had a reconstruction as I really hate how I look now, I can cope with it going out in clothes now unless people hug me, but washing prostheses and the special bras and all that palaver just depress me every time - I don´t think I will ever get used to see foam mounds drying on the edge of the bath and knowing that I need those to look pasable in public.......and they are supposed to be a breast - yuk! But at least I can go out of the house now without being riddled with panic.

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Re: Puzzling and worrying new information post mx and recon

Thanks RevCat 🙂
I know that I should be concentrating on the positives - I have been so fortunate that it was caught in time before it spread but I have regretted on occasion in the last few weeks having the immediate reconstruction as it is such a massive op and is such a big change to deal with. Although it is less than 5 weeks since my op it seems like forever and I am only just getting to see that I am actually improving - boy am I down! What a wimp!
This really is a roller coaster ride isn't it? You think you are beginning to cope and get better and something like this knocks you for six - stupid really as, as you say, in the grand scheme of things it doesn't matter and I am probably better off (psychologically as well as physically) having had a mx!
Oh well I will find out tomorrow hopefully that the letter has a typo or something!
RevCat
Member

Re: Puzzling and worrying new information post mx and recon

Hi Liz,
Sorry you aren't getting any replies just yet, hopefully someone with some useful insights will be along soon.

It is totally undertsandable that you are confused and annoyed by what seems to be a mis-match between what you were told and what they have found. The only way you will get a satisfactory answer is to speak to your BCN.

This may not be true for you, given your original plan, but sometimes due to the location of the tumour or DCIS they will do a mastectomy rather than a WLE because it would be impossible to get what they term 'good cosmesis' in other words, the location of the cancer is such that getting it out would leave you with an impossibly misshapen breast... this was the situation for me (although my cancer was VERY different from yours, it was slap bang in hte middle of my breast so the only option was a mastectomy)

Hard though it is, try to focus on the positive news - that you are nodes clear, that there was no further spread withinyour breast - and concentrate on rebuilding your strength.

I hope you get some satsifactory answers soon and are able to move forward in rebuilding your life.
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Re: Puzzling and worrying new information post mx and recon

bumping this to see if anyone replies
Guest user
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Puzzling and worrying new information post mx and recon

Hi all

I have just received my copy of the letter written to my GP following my post op appointment with the Breast Consultant.

The information in there does not seem to tally with what I was told pre-op. When I was first told about my DCIS I was told that I would have a WLE unless the MRI showed up more areas affected. After my MRI I was told that there were TWO areas affected and that the affected areas were sufficiently big and far apart to necessitate a complete removal - that is a mastectomy.

The letter however the letter to the GP states:
".... we found a small amount of high grade DCIS with no invasion in her breast. This measured 25mm across and was ER negative, had clear margins and 0 out of 4 lymph nodes were involved ..."

All of which is good news I realise that (except maybe the ER negative bit which I had suspected all along) BUT WHY did that necessitate a mastectomy??

Am I missing something here?

Puzzled and a bit infuriated.

Liz

PS I will probably ring the BCN on Monday but that is 2 days away!