5 years and still here!: Well there was a time... - My Ovacome

My Ovacome

15,787 members18,349 posts

5 years and still here!

Emsymits profile image

Well there was a time early on when I wondered if I’d make it this far. I was diagnosed 3a in 2017 aged 47. It was in one ovary and lymph nodes. Had the full debulking op and chemo. I’ve had great treatment down here in Kent and have nothing but praise for my Onc Dr W who has put up with my endless questions and what can I say about Miss K my surgeon? She’s a star - efficient, approachable and her skills with my surgery have meant I’m here now. Thank goodness for our amazing NHS!

I’m now at that weird point where I’ve this week been officially discharged from the oncology service. Kind of elated but I’m scared a bit out there in the world ‘on my own’. Miss K has agreed to an annual CA125 test and call if needed which is so reassuring! They are good at emphasising the ‘call if you’re worried about something’

As I’m BRCA1 the issue of elective double mastectomy has again been raised. Time to find out more details but looks like it may be the most sensible option for me if I dare to think long term!

Just thought I’d share to show there are still some of us out there quietly going day to day.

Stay strong ladies. Look after your diet and mental positivity. I truly believe both help.

Love to all 🤗

Em

X

52 Replies

That’s brilliant Em… fantastic news! Thanks for sharing x

Congratulations. 🥰 Now go get the preventive double mastectomy. I'm somatic BRCA 1. Had breast cancer and mastectomy in 2006 before genomic medicine became the norm. Dxd with HGSE 3C OC in 2015. I deeply resent not having access to the knowledge that a prophylactic hysterectomy and oopherectomy could save my life. I've spent the last 7 years fighting to survive. I'm still here too but my quality of life and family have suffered immeasurably.💔

Emsymits profile image
Emsymits in reply to Tesla_7US

It sucks doesn’t it! I’d kind of put the BRCA breast cancer risk in the secondary worry pile as I get annual MRI/mammograms and was concentrating on the ovarian cancer! Looking at the stats for me it’s a 60-90% chance of getting breast cancer and the surgery would reduce that to 5%. How did you find the mastectomy?

Tesla_7US profile image
Tesla_7US in reply to Emsymits

I had a single mastectomy. It was far easier than I anticipated. I discovered to my surprise that I get a paradoxical reaction to the opioid in Vicodin painkiller. I actually felt MUCH BETTER when I stopped the pain meds 24 hours after surgery. There is a temporary drain they install to collect fluid build up. You empty that drain yourself. No big deal. It's more of an inconvenience than anything else. Mastectomy was a vacation compared to my massive salpingo oopherectomy.

SarahBa profile image
SarahBa in reply to Emsymits

That really is such great news, I’m so happy for you being NED after five years and the CA-125 tests will give you peace of mind regarding the ovarian cancer.

I was wondering, if you don’t mind me asking, as I was diagnosed (November 2021 aged 49) with oestrogen receptor positive ovarian cancer and oestrogen receptor positive endometrial cancer and whilst I’m not BRCA positive I have recently been told by a consultant (specialising in breast cancer) I have ‘very dense breast tissue’ and this is included in the report I received from her.

Having dense breast tissue increases your risk of breast cancer in two ways, firstly simply more chance that a woman with dense breast tissue will get breast cancer and secondly it is much more difficult to spot the cancer on a mammogram as the breast tissue is white and a tumour is white too so can be easily missed.

It would appear that you have an annual breast MRI and mammogram and I was wondering if you knew (or anybody knew) what the rules are regarding being entitled to an annual breast MRI?

A mammogram once every three years for me means there is a high chance any breast cancer I may get could be overlooked and I’m wishing to be pro-active and see what I am entitled to on the NHS.

Thank you to you or anybody else that may be able to help me with my query.

Kjpip profile image
Kjpip in reply to SarahBa

Hi SarahBa, I'm not sure what any other rules/criteria there are about being eligible for an annual MRI, I only know this is offered if you're BRCA 1 or 2. I would definitely have a conversation with your consultant to see if they can include you on the eligible list. Good luck!

Emsymits profile image
Emsymits in reply to SarahBa

Hi. I’m afraid I don’t know about non BRCA ladies. I was automatically offered an annual MRI and mammogram due to the horrendous % chance of getting breast cancer due to being BRCA1. 60-90% apparently 🙄I assume entitlement will be assessed on risk 🤷‍♀️ Aren’t ladies over 50 entitled to annual checks regardless?

SarahBa profile image
SarahBa in reply to Emsymits

Thank you for your reply.

Women over the age of 50 are only entitled to a mammogram once every three years and unfortunately for women with very dense breast tissue like myself it is notoriously difficult to spot a tumour via a mammogram until it is sizeable/at a later stage. An ultrasound is better and an MRI even better.

Wonderful news, keep going. My daughter inherited the brca gene from me and she had the surgery and apart from immediate menopause she is great (she is 40}. Good luck going forward, you have nailed this together with your wonderful NHS hero's. Joanie

First of all….we’ll done to you and your team. Such good news. Like you, I was a bit freaked when I got to the 5 year point. Like you, the CNS team offered a yearly CA125 and an immediate appointment if I was worried about anything. (I’ve checked on things twice). I’m nearly at my 20 year mark, still thanking that team that did such a great job on me. Now I’m supporting other women going through a Gynae cancer diagnosis, working with the same hospital Gynae Oncology team. We run a monthly coffee morning/support group, with a CNS present so no-one has to wait long if they have a wobble. Long may you remain in the clear 🤗 xx

WoolyHat profile image
WoolyHat in reply to wendydee

That’s super Wendy! I didn’t think 20 years was possible at all. That’s wonderful! Thank you for being on here and sharing your story. I hadn’t seen you here before but I’m delighted to find you today. Well done on all your work too. Anne 🤗

wendydee profile image
wendydee in reply to WoolyHat

Hi! How are you doing now? I hope things are ok with you at the moment.I was at the Ovacome AGM meeting when this app (HealthUnlocked/ovarian) was first launched. We tried it out at that meeting then it was launched the next week, so I must be one of the oldest members on here 😂. I don’t post much, after a rather unfriendly comment from another member who suggested I was gloating about my health and that I should pack up and go! I just comment if I think it may help. I certainly count my blessings every day and I’m aware i could have a recurrence any time. I don’t think I gloat! I just try to help, as a volunteer ambassador, advocate, supporter etc for several charities, including a local support group which I help to run with other survivors of Gynae cancers, copescharity.co.uk.Thanks for your supportive message. All the best.

Wendy xx

WoolyHat profile image
WoolyHat in reply to wendydee

I’m doing well, at the moment. Thank you. I feel very lucky too. I’m BRCA1 and on Olaparib for three years now.

It’s terrible that people post unkind things. I think that one of the most important things about this forum is hearing from people who are doing well. Following Kathy, Katmal-UK has been hugely important for me and given me great hope during bad times. I’m delighted to add you now. I’d love to think that I could be alive and well in 15 years. I’m 55 now.

As time passes I get more concerned that I’ll have another recurrence soon so it’s wonderful to hear from you. 20 years is brilliant. Here’s hoping you have 20 more to continue your good work!

wendydee profile image
wendydee in reply to WoolyHat

It was only one person and I don’t think she’s on here now. I was 52 when I was diagnosed and tte surgeon told my husband, ’she’ll have 5-10 years if she’s lucky!’. Yup…..nearly 72 now (it sounds so old 🤣😂🤣) and feeling as well as I ever did!

Stay strong xx

RoseMS profile image
RoseMS in reply to WoolyHat

Dear WollyHat, may I ask please, are you 3 yrs on Olaparib after frontline chemo or a recurrence? I am coming to the end of my 2yr Olaparib as maintenance and would like to stay on it if possible. I’m looking for examples for my Onc to put to her! Like most of us on here, concerned about a recurrence. I was diagnosed 3c and handing noticed really symptoms, so not sure about my ability to recognise an early recurrence! Thankyou

WoolyHat profile image
WoolyHat in reply to RoseMS

Hi Rose, I was diagnosed in 2015. Recurrence in 2018. On liver & some lymph nodes. After chemo I started Olaparib in May 2019. My consultant is thinking of taking me off to this summer, though, which is a worry. I’m Irish. My consultant is in Dublin.

Best regards,

Anne

Dubai18 profile image
Dubai18 in reply to wendydee

Wow well done Wendydee, so glad you have made it so far, it gives us more hope to stay strong and believe that it can happen. Best wishes and love ❤️

wendydee profile image
wendydee in reply to Dubai18

It can happen! Stay hopeful and as healthy as you can xx

Haeh profile image
Haeh in reply to wendydee

Wendydee thanks for posting. Very happy to hear how long it is since you have been diagnosed. It gives everyone hope when they hear such good news. I am 72 and have just past my 5 years since diagnosis and glad to be here. Let's hope that we will be here for a long time, Best wishes Jx

wendydee profile image
wendydee in reply to Haeh

Hi, Thanks for your message.

Wishing you all the best. I’m 72 in a few weeks and hope we’re both here for many years to come!

Stay well,

Wendy xx

Woohoo, brilliant post! So happy for you!

Fantastic news EmI am so pleased for you xx and i hope have a lovely long and happy life x

Lots of positive love!

Diane

X

Great news. Now to look forward to the future. Your story is very much like mine. My surgeon was also a Miss K. I wonder if she was the same one? I couldn't praise her enough. She walks on water as far as I'm concerned. All the very best for the future. xxx

Thank you for your post Emy. I've just been given the all clear after debulking in January and it's really nice to hear from people who have been clear long term 😊

Great News x

Brilliant post, Thankyou for sharing xx

Amazing news! Very best wishes for a long and happy life. X

Hi Emma, thank you for sharing your wonderful news, it gives so many people hope. All the very best for a happy, healthy future.Denise xxxxx

Fantastic to hear such wonderful news!

That is fantastic news! So happy for you! I'm only 6 months post-dx and about to start Olaparib and Avastin. Also BRCA1 and the docs are already saying I should have prophylactic masectomy. I too wish I had known about my BRCA status so I could have had a hysterectomy after my son was born. I do hope genetic testing becomes more the norm in future. So pleased for you and good luck with whatever you decide! xx

Emsymits profile image
Emsymits in reply to samantha101

Let me know what you decide about the mastectomy. It will be interesting to hear what they say to you. (They did say to me that they wouldn’t do the surgery until I’d been NED for 2 years)

samantha101 profile image
samantha101 in reply to Emsymits

Hi Em. yes, I'll let you know what happens goping forward. My first oncologist said i should consider it after my 2 years of olaparib is up but the oncologist i spoke to last week said I may not necessarily have to wait that long. To be honest, at the moment I feel i can only concentrate on the ovarian cancer and that another operation so soon would not be a great idea. I'm worried enough about the Olaparib/Avastin combo at the moment. Let us know what you decide. Best wishes xxx

Yay!! Brilliant xxx

That’s brilliant, Em! Amazing that you’ve been discharged. I had a double mastectomy straight after my first chemo. In retrospect I think it would have been better to have waited until I was stronger because one side took months to heal.

It’s really great to hear your story. It gives us all hope. Thank you for being on here and sharing your story.

Anne 🤗

Thanks for sharing. I am crying with happiness reading your news. Thanks for reminding us to hope and believe. Thanks

Keep strong! I’m sure overhauling my lifestyle and being as positive as possible has helped! … oh and a shed load of vitamins!

Can you share which supplements you went for?

It sounds like you have a difficult decision to make and I wish you well whichever way you choose to go.

Thank you so much for sharing hope in your post. Sometimes I feel that I am maybe in denial when I think of a future and with no recurrence, it's so good to hear it is possible. I hope I can post similarly in 4 years time! Thank you and good luck xx

Brilliant news to hear, thank you for sharing xx

Delighted you shared your story best wishes for good health and thanks for lifting me today x

Great news and thanks for sharing it xx

Great news, thanks for posting. I wonder if you were at the same hospital in Kent Im at. Maidstone, their oncology dept is fantastic.

Hi Em, 🎉 congratulations, so very thrilled for you on reaching this amazing milestone, here’s to the next 5 years🥂. I remember you joining our lovely family and am so happy you’re here to share your news with us. The annual CA125 test and the ability to contact the oncologist is a great comfort to many of us myself included. I can’t really advise on the mastectomy from experience as I’m not BRCA positive but, I think logic says it’s the next step. Whatever you decide, we’re here for you. Take care lovely lady ❤️xx Jane

So very pleased for you. I do love to read about happy outcomes.

Wonderful news ‘Em, thank you for sharing ! Donna 😊

Wonderful news!! So important to post these positive updates especially for anyone newly diagnosed, I remember myself 4 years ago desperately seeking such survivors.

Love your mention about positive mental attitude I believe it helps too 😊 keep smiling and stay happy and healthy,

Liz Xx 💖

Good for you. Long may it continue. Hugs from paris

That’s such great news! Thank you for sharing.

Fabulous news, so pleased to hear you are doing well 5 years on! I’ve just reached 6 years with no recurrence. I was a similar age at diagnosis and shared your sentiments about the future but like yourself have had fantastic care! I had a mastectomy with reconstruction (DIEP flap) 2.5 years ago with 2 amazing surgeons. It is a a big procedure to undergo especially after having had ca treatment but I am pleased I don’t have the breast ca worry now and the surgery itself has been really successful! Good luck with your decision and hope you continue to stay well! Jo xx

Can I just say a word of caution. I was stage 3C but feeling great after 5 years.

It DID come back though, 8 months after that. Would Dr W agree to a CA 125 every 4-6 months? As BRCA1 this is what my onco would want -& lucky for me he did

Emsymits profile image
Emsymits in reply to Sherrym

Oh don’t worry I’m not continuing in ignorance for a year. I intend to get a private test after 6 months just to make sure. There’s no way I’m waiting a whole year!

Sherrym profile image
Sherrym in reply to Emsymits

Fab! We are our own best gauge of our risks TBH. Stay fierce!!!!

You may also like...