hello everyone !
im a 53 year old mum of a 28 year old daughter, who was diagnosed in march this year with Grade3, TNBC. she also has the BRCA1 faulty gene. my husband, our son and myself are going through the genetic testing atm and i had my results this morning. and they are as expected. i also have the BRCA1 faulty gene. the lady from the genetic clinic (i live in denmark) strongly did advise me, to have my remaining ovary removed but also to concider to have my breast removed as through the BRCA1 the risk for me to develop cancer is much higher now…
thankfully i dont have any issues with having " parts taken out and off " im so much more fortunate than my daughter and have the option of preventing at least these two types of cancer… my worries are on a entire different scale… i have bad panic attacks and also Thanatophobia- which is extream fear of death and dying… so being confronted now with 2 operations is making me rather uncomfortable and i know, it will eventually fully overwhelm me…
but i would like to find out, if anyone on here had to go through these OPs and can share some insight ?!
going by what the lady from the genetic clinic told me (and she pointed out that she is not a surgeon, so i definitely should what she did tell me, with the surgeon !) that both breasts can be removed in one and the same OP… and the ovary would be done via key hole surgery… but as i had a key hole surgery many years ago, she was not sure, if another key hole surgery would be possible…
i have read a few times here on the forum, that even after a full breast OP (if there are no complications!) ladies were able to go home on the 2nd day…
im so very worried about my husband… i have seen him so deteriorating, since our daughter has been diagnosed in march and now this on top of it… it breaks my heart, and i cant make it better for him…
is all this damn, frigging downwards spiral of worry, fear, anger, tons of info, emotional turmoil aso… it comes from all different angles, in so many different forms, for each of our family in a different way and form is madness… im writing this not in a freaked out way… strangly enough not but much more in a overwhelmed form…
wishing you all well, hoping for strength and determination … that better will come of it…
T
Hi T,
I am sorry you are having to go through this additional anxiety and surgery at a time when you are already going through it with your daughter.
I had a single mastectomy and it was far easier than I expected. I came home the following morning with a drain, which the district nurses came to empty for a couple of days until it was taken out, and I had very little pain, only needing to take paracetamol. Recovery was straightforward too.
Is there someone you can talk to, to address your fears and to find out more information on what to expect? Your surgeon or someone in the team perhaps?
My niece also has thanatophobia and had to have half of her thyroid removed; they made sure her surgery was the first of the day and helped her through her anxiety.
Take care.
L x
hello @lisa49 !
thank you so much, for your note and reaching out -always so very much appreciated, if ladies respond with info and sharing their personal thoughts/experiences
this is my big saviour, that even a mastectomy seems to be a rather straight forward OP, where you can get home fast( if there are no complications aso).
i read a lot of notes from ladies on here, who- like yourself- all simply got on with it
and all these things i dont worry about at all… is more the fear of all what can go wrong and in my brain setting pretty much all CAN go wrong, from sabotaged poercuts, via the OP to my luck having a crazy surgeon who perpusly will dodge the OP… it is totally insane but that is what im dealing with… this is (and you probably will know from your niece) what the brain does with this damn thanatophobia. it is totally overpowering and very very scary !
that was a great point to bring forward at the consultation with the surgeon… to may line my OP up first of the day… so i dont have much time to go mad !
i have my first consultation for my remaining left ovary on tuesday but no date for the surgery yet. for the double mastectomy im still in the referral state… so many questions to ask. also to find out , how close this two OPs can be done ?! but aparently in the UK they have two surgeons for both breasts operating, to make the OP shorter and to ease pressure for the surgeon. i think this is a great solution and i hope they do this in this way here in DK too
im very fortunate, that my husband and my son are fully aware of my “issues” and they have always been a huge support for me, but it will be also good to be able to talk to the surgeons… even if i dont want to know too much neither… dont want to feed this brain of mine with more info to feed on…
lisa, would it be also ok to ask you… is your breast entire gone now, as this is what i will go for… i put it stupidly now , so do they take everything what makes a breast out and then reduce the remaining skin and close everything up ?! i suppose that is the idea, right, to get everything out, what could cause cancer ?! i also will opt for a none reconstruction… would be only another wprry to have to deal with and im totally ok with just having two scars there… i suppose as a woman without cancer but the BRCA1 they wont have to do anything regarding the lympnodes on both sides of the breasts ?!
apologies for all those questions… and im fully aware that any answers are purely down to own experiances and NOT any medical advise !!!
thank you again so much, lisa for your note !!
sending much love to your niece and hoping she will find the strength to go through life with this nasty phobia, still being able to be herself and find joy and happiness !!!
and i would like to send strength, detrmination and inner peace to you…
T
