Mammograms: diagnosed HGSOC December 2019. BRCA... - My Ovacome

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Mammograms

RoseMS profile image
19 Replies

diagnosed HGSOC December 2019. BRCA 2 somatic only. Have had standard chemo, debulking + 2 years of Olaparib and doing well to date. My question is around mammograms: what is the usual checks for ladies with OC history? I would imagine it varies widely however my GP stated it would be as normal, i.e. when I am called for the normal 5 year checks? I dont have immense faith in my GP’s cancer knowledge as he told me I couldnt get a recurrence of OC as I no longer had ovaries. So I just want to check with other ladies whether this is correct (i.e. 5 year mammograms) or not, in your experience. Thankyou.

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RoseMS profile image
RoseMS
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Trickysite profile image
Trickysite

if you have BRCA1 or 2 , it is yearly mammograms plus

Yearly MRI. Not sure otherwise but a Ovacome or Macmillan should know. Emma x

Jud15 profile image
Jud15 in reply toTrickysite

Routine breast screening is ages 50 -70 every 3 yrs, but you can request to continue after 70 but it won't happen automatically.

RoseMS profile image
RoseMS in reply toJud15

i am under 70. I wondered if OC patients had more frequent checks than the norm, thats why I posted on this site.

Maldive profile image
Maldive

Hi RoseMS

I too was diagnosed with HGSOC stage 4b, in February 2019 and I’m also BRCA 2. I have followed your treatment finishing Olaparib in December 2021. I was told initially it’s yearly mammograms but they have now added a yearly MRI with contrast, I had my first MRI [ Bloody awkward to get face down in the MRI machine with your boobs hanging in a couple of tubes, but you have to laugh] in October 2022, they have said they will try and get them on the same day so that’s something to look forward to in 2023. My breast care is being managed by a high risk breast care team, nothing to do with my doctor or oncologist. The genetics team did my initial referral to a breast clinic. Ask your genetics team or any of your doctors for a referral. I hope this is some help.

Loads of love

Dee

RoseMS profile image
RoseMS in reply toMaldive

many thanks Dee. Can i ask which area are you living? I am London. I have 6 monthly CT scans only nowadays.

Maldive profile image
Maldive in reply toRoseMS

Hi RoseMS

I’m in the North West, just outside of Liverpool, I just have CA125 bloods done now every 4 months and a phone call from a CNS.

Dee xx

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hi Rose,

Thank you for your post, and to our members for sharing their experiences.

You explained that your BRCA 2 gene change is somatic only, so it occurred spontaneously in your tumour rather than being inherited (germline gene changes). This means that you would have breast screening in line with the national screening programme.

There is more information about the UK breast screening programme on the Cancer Research website here: cancerresearchuk.org/about-....

For those with an inherited BRCA gene change, there is information about breast screening on the Ovarian Cancer Action website here: ovarian.org.uk/ovarian-canc....

You'll see some previous cancers can increase the risk of breast cancer, listed on Cancer Research UK here: cancerresearchuk.org/about-.... Ovarian cancer is not listed here, unless there is an inherited BRCA gene change. 

I hope this helps in answer to your question regarding breast screening. Please do discuss your individual risk and appropriate screening with your GP or medical team for individual advice.

Please do get in touch if you have any further questions or if you want to talk anything through. We’re here Monday-Friday 10am-5pm on 0800 008 7054 or you can email us: support@ovacome.org.uk. We’re here to support you.

Best wishes,

Alice

Mysticmeg123 profile image
Mysticmeg123 in reply toOvacomeSupport

Alice I am so pleased you responded to this post. I have been called for my 2 year mammogram and already starting to feel panic rising in anticipation. I have become quite neurotic since my Ovarian Cancer diagnosis and reading your response has given me some comfort so thank you.

Motiva profile image
Motiva

I would ask for yearly. Well done on doing so well with all your treatment. I am about to start. Also have a mammogram on Wednesday for an extra bit of medical input. Have a good Friday,

F x

Realistic profile image
Realistic

I couldnt agree more with you on GPs knowledge.l have mammogram about every 3 years . And like you my experience wasn't good with my GP on ovarion cancer knowledge my CA125 had gone in the thousands after having it checked every year and it was normal l was sent for a scan at my local hospital and that showed nothing our G.P said he'd check it again in 12 months l then asked him to for my CA125 again in another 3 months he said it really wasn't necessary but my instincts kicked in and l paid to see oncologist thank god l did he sent me for a pet scan which showed l had ovarian cancer l had no symptoms whatsoever l have since changed GP who was appalled that my high CA125 was just ignored for me its very important reading on my cancer. But all that said 5 years on and lm doing very well. But if lm not happy with something l pay for a second opinion best thing l did lm sure it saved my life. Doctor was a good GP no doubt but didnt have the knowledge needed for me. We all have to be pro active on our care, think we all know our own bodys although having cancer can make you paranoid at times. Good luck with getting your mammogram keep well & positive nearly summer. Love & hugs everyone SheilaFxxx

Jacquiemoo profile image
Jacquiemoo

I had a mammogram every 2 years. Just had one in January. My Dr told me to get it. 5 years seems too long. I would check on that some more.

Elena_Ukr profile image
Elena_Ukr

History of Ovarian cancer at the age of 41. Now I am having breast MRI yearly. I am in north US if that’s matters. All the best to you!

Leniko profile image
Leniko

she is wrong. My ovarian cancer metastasized to form a tumor on the psoas muscle in my lower back.

SopSinger profile image
SopSinger

I have a close family history of breast cancer (Mum) and also have Lynch syndrome, so I have annual mammograms. I don't know what the guidelines are for your situation, but it would be worth searching the NICE guidelines.

RoseMS profile image
RoseMS in reply toSopSinger

i have enquired with Mcmillan specialist nurse who said the NICE guidelines were confusing and she sent them on to me! awaiting a better response from them.

Ova-whelmed profile image
Ova-whelmed

I've just been invited to my 5 year screening when I asked my oncologist he strongly recommended going forward with it in BRCA negative.

mrstadpole profile image
mrstadpole

I have had OC and BRCA 2.I was told no more mammograms after the age of 70 unless you arrange them your self privately.

RoseMS profile image
RoseMS in reply tomrstadpole

I am under 70 however NICE guidelines state you can request to have mammograms after that age. Might be worth asking your GP if you still wish to have them?

mrstadpole profile image
mrstadpole

I am 72 and was told by consultant that I would need to arrange it myself.I suppose I should think about this.

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