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Anxiety - BRCA1 positive, has it finally caught up with me?

17 Aug 2019 14:32

Hi 

New on here.  I am 48 and have known I carry the faulty BRCA1 gene since my mother passed away battling breat cancer in 1990.  I admit been in denial most of the time about my health as I am a lone parent and always putting my girls first.  Due to fleeing domestic abuse and struggling with a permenant home, I have been through 3 diff health boards and have to say the care has been on 3 different levels and my records have been very slow to be forwarded.  I had milk ducts removed in 1999 and was told the cells “ were turning”. I have been having annual mammograms and mri scans since then ( although one health board decided I wasn’t important enough to receive mri scans for preventive measures) 

My check ups have now been changed to 6 monthly. Due to struggling with a teenager with mental health issues who is a school refuser I missed my appt with the consultant. I have no family or friend support to help me with my child.  I made it to the mammogram the following week, bringing my daughter who sat outside waiting.  I have a letter telling me to go for A tomosynethesis mammogram and see consultant, the infor leaflets say I may have other tests done too and expect the appt to take up to 3 hours.  The appt is 3 weeks away.  

I am frightened that it has finally caught up with me.More frightened of how am I to support my family if I need surgery.  Yes I know my mind is in overdrive.  I have no in to talk to as found it difficult to make friends in the town and since my daughter is around me 24/7 I don’t want to talk to anyone on the phone as she will listen in and I’m treading on eggshells to keep her anxiety levels down.  

Ive been single 9 years and I guess the thought about losing my femininity will add to my low self esteem. 

Sorry to sound selfish

 

Anxiety - BRCA1 positive, has it finally caught up with me?

17 Aug 2019 19:07 in response to Allyoops2813

Hi I am the  same age as you  and have suffered terribly with anxiety issues since my mum died in 1996 of ovarian  cancer.

I dont know if she was Brca 1 because she died before tests were going to be done, however I only found out I was Brca 1 in April  and I've been finding it really hard to cope it's as if I'm a ticking time bomb.

I have just finished treatment  for triple negative  breast cancer and my next step is going to be a 4 hour appointment  about ovarian  removal  as a preventative  measure and I'm getting  into a terrible  state over it convincing myself they are going to find something.

Since October last year I've  had chemo, surgery which was a double lumpectomy  as I had cancer in both breasts and then Ive finished  radiotherapy  2 weeks ago.

I feel Ive had no time to breathe for the last ten months or so.

I like you am a lone parent and have been on my own for around 12 years now.

I have 3 kids age 4, 5 and  13 and  they  come first.

I literally  have no time for myself and no family support at all and so my needs always come last.

I've had to juggle  many of my appointments  around due to child care arrangements  and my 5 year old has special  needs and demands  constant attention.

I've also been told I need to lose several stone to have a bilateral  masectomy  next year as knowing I have the gene has me living in constant  fear.

I really dont want any of the surgeries at all but for me I feel it gives me the chance to do something  about prevention  for the future as my kids have kept me going throughout  my journey  and  I will do whatever  it takes to be around  as long as I can  and  that's what is helping me face these issues.

Is there  any support from your childrens school at all about your problems and related anxieties  or even some counselling  if you speak with your gp.

I am on the waiting  list for psychotherapy as I have been having anxiety  attacks and problems  sleeping.

I would urge you to go to your appointment and try and make some arrangements for the children in the meantime.

You like me have to learn to be abit more selfish  and put yourself  first as unfortunately  if we don't  nobody  else will and  we only get one chance in life so please do go to your appointment, it may be nothing  but if you dont go you will never know.

It may just be they want to keep a closer eye on you now because of your age and the Brca gene.

I agree the worry about you losing your femininity  is a major  thing and Im fully in agreement  with you there but you can have implants or even a reconstruction  using your own tissue possible from somewhere else from your body; tummy maybe.

You don have  to go flat.

Please just think of any surgery as a way of you being more in control  of your future  destiny.

I'm sure you want to be around for as long as possible  to see your children grow up.

All the best x

Anxiety - BRCA1 positive, has it finally caught up with me?

17 Aug 2019 20:28 in response to mumof3angels

Thank you for your reply

Did you get the option to have a double mastectomy when they removed the lumps?  

I had ultrasound scans for years on my ovaries then to be told The is procedure is no longer cost worthy on the NHS for preventive treatment. Polycystic ovary syndrome was found which made sense of my symptoms.

I was told last year my body mass index was too high to have preventive surgery to remove my ovaries and needed to lose weight and return when I had.  I am on very strong antidepressants at 300 mg per day which cause weight gain.  

I am not frightened to have my ovaries and Fallopian tubes removed.  I am frightened to lose my breasts.I know it’s difficult to lift arms up and have drains from the wounds.    I have lost sensation in one breast due to previous surgery.  I guess I always had hope of having a relationship once again.  I don’t believe any man would be interested after a mastectomy.

Is chemo and radiotherapy sore?  Is it really as bad as it seems?   

My fear is my ex returning into my child’s life when she is vulnerable. We have had no contact for 6 years. He was cruel and had a drink problem with a temper.

I have a good relationship with the school. They support usas much as poss within school time.  CAMHS became involved for my child but she refused to engage and they discharged her until she felt able to speak. 

Have to wait til school term begins again to put another plan of action in place.   

I am exhausted coping with everything myself. Do you have support from Gingerbread or other lone parent groups?   We don’t have any lone parent group suppprt in our area.  Nearest is 50 miles away.

who will look after my teenager (13) if I have surgery and recovery time?  My older daughter has a baby who is 7 months old and I do the supporting as she works.

I have always been the strong one and this time there is no one there for me when I need reassurance.

 

 

Anxiety - BRCA1 positive, has it finally caught up with me?

17 Aug 2019 22:36 in response to Allyoops2813

Hi thanks for your reply.

I wasn't  offered a double mastectomy before they removed the lumps as I was told it wasn't  necessary  buy it was only when I went for my radiotherapy  planning meeting  that I was advised because of the BRCA gene that I should consider having it done along with the ovaries.

As if turns out the breast nurse and surgeon didnt think that I could cope with the surgery in my present state as I am on  Fluoxetine  and diazepam.

I'm not happy with this cos as I said its the fear in my mind all the time.

I need to lose weight, I'm 16.5 stone but anxiety  makes me comfort eat and often  I just dont  have time to eat sensibly because  of the kids  and no other help.

I wouldn't  worry about body image, easier said than done I know as I know it will affect my confidence  and body image but I know of many women where their partners have stood by them and if you ever did meet anyone else I'm sure if they really cared for you it wouldn't  be an issue.

You have to undergo extensive  counselling  before the double masectomy  anyway and  countless meetings.

Chemo wasn't nice but doable and a necessity  to kill the cancer. I had a complete  response to chemo  and clear margins after surgery.

I also had a full axillary node clearance  as I had a lump under my  arm too.

My arm has still not recovered  and sensation  is lacking.

The  radiotherapy  was difficult  in that it was everyday but  it was only after that I felt uncomfortable and am still sore with peeling skin and major  fatigue and I'm just plodding desperate  for a break but nobody to have my kids.

I'm like you with nobody to care for me when I have major surgery and right now I dont know how I will do it but I feel I have to find away  somehow as my survival  and being there for my kids is my main  concern over how I will look but I do understand  where you are coming from.

There are no groups near me for lone parents and U never get out much due to child care issues.

Is there a home start near you?

I wish there were  an easy  solution.