Radiotherapy

2 minute read time.

Received one of the phone calls I have been waiting for today - no news from the genetics clinic in relation to the result of my BRCA1 cancer gene screening, so it looks like time has run out and the radiotherapy is back on.  The radiology dept phoned and asked if I could go straight over for the planning appointment - I bottled it and have arranged to go in tomorrow morning instead.  There has been a long gap since my surgery (too much time has resulted in a bit of denial on my part) and now it looks as if the radiotherapy course will be started within the next few days.  I am so nervous, but my sister has been through it and is coming with me tomorrow.  She has been great, but its hard to talk to her sometimes as I have to keep it in my mind that she has only just finished all of her treatment.  She has even supplied me with enough aqueous cream to keep me going.  My anxiety levels are rising, but I am getting on with jotting down some questions for them tomorrow.

I shouldnt have worried - the staff were great and so reassuring - I met some more great people who were waiting for their appointments too, so feel ready now for the next stage of treatment.

The results of the genetic test came through - I have tested positive for the BRCA1 gene mutation - which means that I have a 20-30% chance of getting a second primary breast or ovarian cancer and now my 3 daughters will also have to be tested - they are such good girls and my worry is for them; my eldest is 21 and my middle daughter is nearly 18, so they are just starting out on their lives with the possibility that they could also cancer this gene mutation.  I will feel so guilty if I have passed this on to them, it could affect their choices of having any kids of their own, but I am trying to keep calm for them. We will cross that bridge later.  They have been referred to the genetist in December. I have been referred to a gynaecologist to discuss an oophrectomy or hysterectomy which would reduce my chances by half - the mastectomy is on hold for the time being as the radiotherapy starts next week, so we will see what next year brings in relation to that. At the moment I am trying to stay optimistic about it all.  I know that I was extremely lucky to have found the tumour when I did and that it hadnt spread anywhere else, so I dont want to push my luck too much.  I have been booked in to have 20 days of radiotherapy - have now got my tattoos so its just a countdown now to treatment - the main treatment should end on 23rd December and I should be due a booster between Christmas and New Year. 

Anonymous
  • FormerMember
    FormerMember

    Hi Ange.  I have read your biography and you have similarities to me.  I too had grade 3 bc.  The tumour was 2.5cm.  I had 6 months of chemo and 6 weeks radiotherapy.  I was very surprised to read that if you do carry the BRCA1 gene the treatment would not be helpful long term.  I have a suspicion that my family has a genetic link to this disease, but because the previous family members to suffer from it were my great gran and some of her close family that it is not considered genetic.  I have spoken to Macmillan Cancer Care regarding this and they have told me there is a strong possibility there is a family link especially as my cousin has been diagnosed with bc at the age of 37 which I was also.

    I have two friends who have also suffered bc and both of their families were offered genetic testing even though one of my friends doesn't have anyone else in the family who had suffered from this.  The last time I asked the doctor at the hospital about this he was offhand and told me to discuss this with my GP.

    I hope the radiotherapy goes alright for you.  I didn't find it too bad at all.  Just keep slapping on that aqueous cream.

    I wish you well for the future.  Christine xx

  • FormerMember
    FormerMember

    Hi Christine

    Thank you so much for replying.  I had the tattoos done today so although I have the surgery scars it just felt a bit of an additional permanent reminder of all of this (as if I could forget anyway).  I start next Thursday so I am hoping to be able to go back to work on Monday and fit it around my treatment.  I have 4 weeks of radiotherapy so my final one is on 23rd December - just in time for Xmas.

    When I went to a previous GP I also received a negative response to my request for a genetic test - even though my mum and my sister were both diagnosed for breast cancer - my sister at 39 and my mum at 44 - I think it is down to the GP that you see.  As your cousin has now also been diagnosed, I was wondering if it would be worth going to see another GP and ask directly to be referred for genetic counselling.  It seems shocking that people are not taken seriously.  

    Let me know how you get on.

    Take care

    Ang x

  • FormerMember
    FormerMember

    Hi Ange, I have been thinking about going to see someone else to request this.

    I hope your treatment goes well.  As you know I am getting married on Saturday so won't be on here for a few weeks, but will be in touch when I get back to find out how you are.

    Best wishes, Christine xx

  • FormerMember
    FormerMember

    Ange please dont feel guilty about possibly passing on the BRCA gene to your girls, I know thats easier said than done. I was tested due to my age(26)at diagnosis although no one else in my family has had breast cancer(not a blood relative anyway). I waited over a year for the results which was a bit annoying and like you feared for my daughter the most during that time. She is only 6 right now but I couldnt bear the thought of her having to endure this when she grew up. I also have 2 sisters who have daughters too. My test was negative although the letter I received said they couldnt rule out the possibility of me having a different genetic mutation which they may be able to test for in the future.

    They did say my sisters would be able to start screening earlier than normal and we have vowed to promote breast awareness with our girls as they grow up.

    I wish you and your daughters all the best for the future and hope you get on ok with radiotherapy. I didnt find it too bad to be honest, the travelling to the hospital was the most taxing. I had to go to Addenbrookes half hour away there and back for a 2 minute session on the machine everyday for 3 weeks!! Also I cant see my tattoos anymore so hopefully yours will fade too. I had a mastectomy too so if you need any advice or tips nearer the time feel free to get in touch.

    All the best

    Chrissi xxx

  • FormerMember
    FormerMember

    Hi Ange,

    I was diagnosed with BC last month at the age of 44. I had a lumpectomy a month ago and start chemo on the 27th november. Because my aunt on my fathers side has had BC and now has Bowel Cancer, also both of my grandaprents died from Cancer (again my fathers parents), my oncologist suggested that me and my two sisters have the genetics test. Reading your blog was interesting because I didn't really understand what the testing was all about. There was so much for me to take in on that day. I have talked to my younger sister, who at the age of 27 suffered a stroke and is now blind. She spoke to her doctor about it and she has decided not to have it, she said that after thinking about it she would rather not know. The doctor also told her that because it is not on our mothers side she may not carry the gene any way. Does that mean it is only the mothers who can pass it on to girls. I have two boys can they carry the gene? Sorry to be asking questions when you have a lot to think about yourself. Hope the radio therapy goes ok and good luck for the future.

    Stay strong, love and hugs Amanda xx