Hello. I'm new here and just want to connect wi... - My Ovacome

My Ovacome

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Hello. I'm new here and just want to connect with other people and ask for advice and support

K_webb profile image

Hello. My name is kerrie and I was diagnosed with ovarian cancer in July last year at age 30. I have had surgery to remove the ovary and chemotherapy which finished very end of November. I also have precancer of the womb. I recently learnt last Friday after having a hystercopy, ultrasound scan, MRI and CT. It has come back that I have cysts now on my other ovary that look suspicious and it has been shared with me that it looks like the cancer is back. I am having my other ovary out this month and have to decide whether to have a full hysterectomy due to the precancer aswell. I am now 31 with no children. Me and my fiancee have been lucky enough to do two rounds of IVF and have 4 frozen embryos. But I just don't know what to do. I'm so confused, I feel isolated. We are looking down the surrogacy route but it is so expensive and what ive seen there is no support. All my friends around me are having children and I'm just really struggling. If you have any advice it would be great to hear from you. I would like to meet other people with or had ovarian cancer and my mcmillan nurse told me about ovacome. Cancer doesnt run in my family so can't relate to anyone either. It's potential I will need more chemo aswell and I did not cope last time. Sorry for the long message. Thank you for reading.

27 Replies

Thinking of you♥️ Prayers your way. Sorry not much advice

Hello KerrieWhat a terrible position you are put in and my heart goes out to you, you are the same age as my daughter xx. We can only empathise and try to imagine how hard it must be. We all have our own journeys and sometimes feel very lost but sooner or later we find our path as you will too. My thoughts are that this is such a critical time for you that you should and deserve someone who can talk you through your options on a one to one basis. I had counselling when i was in the early stages and it helped me a great deal, you obviously have the cancer to deal with and your changing plans for having a family. Please contact your gp and see if they can get you someone to talk to, or contact the ovacome team to talk this through. I wish you well and we will always be here to support you every step of the way

Lots of love

Diane

K_webb profile image
K_webb in reply to Bettyxxx

Thank you for your response Diane. I have contacted my local maggies centre and seeing a psychologist today. I hope not helps and prepares me for surgery. My GP hasn't been that great tbh and I had an issue that happened this year with a nurse and I've lost my trust in them. I went in because I had a change in my breast and because they say ovarian and breast xanxer have links I wanted to get it checked out. Anyway I showed the nurse and she laughed at it. I have little faith with them. Just feel a bit helpless as I don't want to have to make such big decision x

Bettyxxx profile image
Bettyxxx in reply to K_webb

Hi KerrieIt might help to write things down too xx the GP and nurse can be dealt with further down the line when you have settled all your other matters but i do think you should give them feedback later on how hard it was for you. The psychologist will definitely help so thats good you have that in place, you will come through this and even though the decisions are going to be hard you will make a plan and start to move forward, i echo what the others have said get a second opinion if your not happy, this is your body and dont be timid now is the time to take control and be your own advocate xx

Good luck and stay strong

Diane

Xx

Hi Kerrie, I can not give any input regarding surrogate options or adoption. It is a very personal decision for everyone. Perhaps for this specific topic you should read out to support groups who are struggling to have children?I would definitely connect with a professional (councillor or someone who specialises in trauma maybe?) to talk to.

It was the best decision I took and it helped a lot. I could share everything with her and I had permission to go through all my emotions without worrying about the impact on her. I cried, I was angry, I laughed, I was anxious. She gave me practical tools which assisted me a lot.

Friends and family don't actually know what to say and do. Some make it about themselves, many give well meaning but very inappropriate advice.

Personally I was not very public with my diagnosis and I chose to do my research and manage my cancer in a holistic manner, looking after my immune system, supporting with an integrative approach, good diet and plenty of walking in nature with my dogs.

It is not easy, and you have to be gentle with yourself and what is important to YOU. You come first. Don't feel guilty about it. You need to invest all your energy into your healing and managing the treatment and the side effects.

xx

Itha

Hello Kerrie. I wanted to reach out and offer some support though unfortunately I don't have anything particularly useful to add other than I recommend you join Ovacome's under 45s forum as there will no doubt be others there with similar experience.

ovacome.org.uk/forms/join-o...

I technically could join this group (43 at diagnosis earlier this year) but instead have gravitated to the Rare Ovarian Cancer and Coventry and Warwickshire support groups instead.

I've found both groups incredibly supportive in coming to terms with my diagnosis and managing the side effects of treatment.

Lisa

Thank you for this information i have clicked on the link and asked to be added. It was an automatic response saying I will hear from someone before the group starts x

That all sounds about right. They'll invite you to the next round of support groups.

There are others in very similar shoes. Hopefully the group will help you find them.

Take care

Hi Kerry, my daughter is the same age as you, so my heart went out to you reading your story.On a practical level, I think that overcome have a younger Womens group which might be good for you to access..you can ring them to find out. The helpline is also a really good resource when you are mulling over a knotty problem such as your decisions about having a family.

Treatment wise, as you find yourself in quite a difficult situation right now, I would suggest you get a second opinion. If you only finished chemo in November and you already have a potential recurrence, I wonder if a specialist centre might offer clearer options for you ?

Whatever you decide, this group is very supportive, we’ve all riding the rollercoaster of this disease and share our experiences to help each other xx

Dear Kerrie,

I don’t know where you live but suggest you ask to be treated at one of the specialist cancer hospitals. Christie’s in Manchester and The Marsden based in Fulham and Surrey are highly spoken of on here. With heartfelt good wishes and a big hug. Emma xx

K_webb profile image
K_webb in reply to Trickysite

Hello. Thank you for this. Unfortunately i live in Hampshire so pretty far to access those places. And I'm not sure what options I have to go anywhere such as these places x

Trickysite profile image
Trickysite in reply to K_webb

Under the NHS you have the right to ask for a second opinion anywhere. Perhaps someone else on this website can recommend another specialist hospital close to you.

K_webb profile image
K_webb in reply to Trickysite

I do trust I my oncologist but I just feel like im relying on one person x

Trickysite profile image
Trickysite in reply to K_webb

In the two hospitals where I have been treated in the last year - UCLH And Marsden - there is always a Multi Disciplinary Team of various specialities and my onc will always make treatment decisions in consultation with them. So, it is not just one person. Does your hospital not work like this?

SopSinger profile image
SopSinger in reply to K_webb

You are entitled to a second opinion on the NHS. The Royal Marsden is world leading. Depending on where you are in Hampshire, the travelling into London may actually be less onerous that some ladies have to do anyway just to access a hospital with cancer services. It may well be worth the effort to obtain treatment (or at least a consultation) at a major cancer centre, as they will be more up-to-date than a regional hospital and will have better access to clinical trials. But I sense the priority at the moment is to get some counselling to help you through the incredibly difficult decision that you have to face. Try Macmillan and a Maggie's Centre if there's one near you. Hope you find a way through this situation. Sending hugs!

K_webb profile image
K_webb in reply to SopSinger

Yes, unfortunately also can't really wait for surgery and need this done next week. I contacted maggies and saw a psychologist on Monday and seeing her again on Wednesday. Just overwhelmed with that and trying to sort out possible surrogacy options and appo etc

I can not begin to imagine what this is putting you through and send you love and support. I was diagnosed at 59 so did not have the additional devastation you must be feeling.I hope there is someone in this group who can relate to the heart breaking time you are having to make.Sending you a virtual hug.xxx

Bless your heart. I’m so sorry to hear you’re having to go through this at such a young age. It sounds like you’re thinking of all options regarding starting a family. Really hope you find success with this. As someone else has mentioned, maybe see if there’s a group for women such as yourself where you could find comfort & advice.

Sending love & best wishes xxx

Really sorry you are going through this. I would look at each element separately. It'd be worth finding out if the pre-cancerous cells can be treated. If they can would this still leave it open for you to carry your own child in the future. The other ovary looking suspicious it'd be helpful to have something more definitive. Could they biopsy whilst in surgery to confirm if it is cancerous or benign? I say this as it can be really hard to tell sometimes from scans and even from looking at during surgery. I'd also ask is there a team that specialises in your cancer and fertility preservation or would they suggest for a second opinion? x

K_webb profile image
K_webb in reply to Notage

They have done CT with contrast, internal scans and MTI with contrast. They send scans of to cyst specialist and have said that look exactley the same as last time and there's tissue in there that is very suspicious. And lots of other info as to why they suspect the cancer is back. They couldn't 100% confirm it last time until a specimen was sent to the lab. But have been getting symptoms again and just had so much negative news that I'm not holding out hope. I have mirena coil in for precancer and they can give me meds aswell but he doesn't think it'll much as you either have one or the other. Not sure if there is a team that specialises in cancer and fertility . I can ask. Thank yiu x

Hi, I'd echo the suggestions of contacting the Ovacome Support Team on 0800 008 7054 as they do have a lot of experience between them and can draw from the Medical Advisory Board if necessary. Many of us here have benefitted from second opinions and again, fertility matters are included in the clinical portfolios of the top gynae cancer teams. Take care and warmest wishes for better days in these worrying ones. L x

K_webb profile image
K_webb in reply to lesleysage

Thank you. And thank you for providing me with a number. I will call them today x

I'm so very sorry. I can't begin to understand how you must feel as I was 53 at diagnosis. I know that the Ovacome team run a group for younger women, perhaps it's worth calling the team and getting details of the group. Sending all my love, Sara

You can get this sorted and you can make it into a positive! Whatever rollercoaster your on you will be strong and with the group behind you and all of us here you will get better and what will be will be 🥰 sending a big welsh cwtch Rhian x

I am so sorry you are having to deal with this at such a young age. And before you’ve had any children. I was diagnosed with ovarian cancer at 42. It is so scary. I ultimately decided to have a complete hysterectomy and chemo because this cancer is so hard to detect and comes back so often. It is not fair or ideal, but I would do whatever it takes to stay alive. I have been cancer free for 6 years. Prayers going out to you.

Hi Kerrie, so sorry to see you dealing with such blows. It's fantastic that you have frozen embryos. It's really hard when your life takes this absurd trajectory. It's a frightening place to be. When I had my surgery, I had the hysterectomy, everything at once,there was no choice! I wish you healing ❤️

I just want to wish you health and good luck, with all my heart!!!

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