Just finished treatment

Hello and welcome to the forum, you'll find lots of supportive women here.  Really interesting hearing you were diagnosed with synchronous tumours as I was too.  Full details are included in my profile/bio.  

Sounds like your treatment went really well which is great to hear.  Do you mind me asking what type of ovarian cancer you were diagnosed with and at what stage and grade this was?  Well this is me assuming your two tumours were ovarian and endometrial however that might not be correct?   

Whilst not great to hear you have the BRCA 1 mutation it's far better that you have this information now. 

Wishing you the very best.  

Hi Sarah

Thank you for your reply and I'll have a look at the forums in more detail once I find my way around!

Following a post menopausal bleed, I spoke to my GP and the ball started rolling from there.

So I was first diagnosed with Stage 1 Grade 3 endometrial, then the biopsy following BSO found the 2nd tumor - Stage 2a high grade serous fallopian tumour and bloods confirmed the BRCA1 mutation. So I was then encouraged to have brachytherapy before the omentectomy, followed by chemotherapy.

You are right, I have been thinking about how I can monitor the risk of developing breast cancer, knowing I have this mutation. I now want to start enjoying my 'freedom' from intense treatments.

I'm hoping you are doing ok. I'll have a look at your profile.

Good to hear from you

Hi Tartanlass, and another warm welcome to the group. I had a hysterectomy in January and histology revealed grade 1 stage 2 (and i am having radio and brachy soon) PLUS an unexpected item in the Fallopian area: precancerous STIC lesions in both tubes, which are rare and lead to high grade ovarian cancer. So basically I’ve dodged a bullet. Because of this, I’m having BRCA testing (had blood test two weeks ago). I have a feeling it’s very likely that I have one of the mutations. I’m trying not to run ahead in my mind but it doesn’t always work, worried not just for myself but for my children and grandchildren. So I can empathise. I’m currently leaning towards annual MRIs and other checks instead of surgery - but that’s me running ahead again and I know I need to wait. Bless you as you try and work through this. 

Hi MarmiteFan59

I hope you're recovering well from your surgery.

Thank you for your kind words.

I'm not sure how you view your experience, but I feel that had I not noticed my PM bleed, the fallopian cancer would have gone undetected as it hadn't shown on my CT or MRI scans, only the endometrial.

Like you, I am thinking that annual breast screening and self examination may be manageable. The thought of more surgery is not on my agenda at the moment.

All the best for your brachytherapy and I hope you get a good result from your blood test.

Hi again Tartanless, I’m recovering well thank you - almost totally back to “normal” aside from still avoiding heavy lifting. I was even driving short distances at 3 weeks post op! It’s terrifying to me (and I don’t say that lightly) that, had I not told my GP about my very slight pink spotting, my endometrial cancer would have  gone undetected and my Fallopian tube pre cancer (stage 0) would then also have gone undetected and led to high grade ovarian and/or peritoneal cancer, Even as things are, because of the STICS, and the potential risk to the peritoneal area, I’m not just having pelvic radiotherapy but also having the abdominal area treated - I have 4 tattooed dots: the three usual ones plus one just below my boobs in the middle. I’ve looked at the stats and I think it’s around 80% of women with STICS who have a BRCA gene. So, whilst I am hoping for the best, I am also trying to prepare for the worst too. My adult children don’t know about the genetic testing - I didn’t see any point telling them till I know either way. Bless you. 

Hi Tartanlass and a warm welcome to our spot in the Online Community. I think we all end up in a state of disbelief - is this really happening to me? 2 years on I still think it's happening to someone else.

Good to hear that you've responded well to treatment yet now you've suffered the added blow about the BRCA mutation - I feel for you. You might obtain some useful info from this forum https://community.macmillan.org.uk/cancer_experiences/brca_positive/. Just click on the link I've created.

Sending welcoming hugs, Barb xx

That's great, you are taking small steps towards independence again.  It's great when you don't have to rely on others to ferry you around.

Yeah, we have had a very similar 'discovery' which thankfully, we acted on and the rest is what has brought us here!

Have you now begun your radiotherapy?  I do hope that goes well for you.  Hit it with everything you can.  I was a bit nervy when brachy was offered, but so glad I did it.  It is a lot to take in when you're presented with a plan of action and then asked to sign, I understand they need to schedule the best treatment, but it's the shock and pace of getting your head around it that I felt shaky about.

All the best for your treatment and the decisions you will make in time.

Thank you Barb.

I'm glad I pushed for the genetic testing last year,  as I had only just received a letter from Genetics saying that I would not be considered for testing as they didn't think I was at risk!!  That was based on the fact that my sister had passed and hadn't been tested and I had no other family members with a history of breast/ovarian cancer.  So I was referred by my consultant Sept 2021 and still waiting for an appointment.  Looks like many people have had lengthy waits, so I need to remain patient!

I was just saying to my friend that it feels like it was someone else this all happened to - you are so spot on there.  Maybe that's a positive to be able to focus away from the worst of the treatment received and to move on in a more focussed way.

Thank you for the link, I'll have a look.

All the best to you xx