I had a giant cyst, ovary and Fallopian tube removed. A CT scan with dye and bloods for tumour markers all showed as normal. But the biopsy showed stage 1a in my ovary. Surgeon said other ovary looked ‘plump’’(!) and fine. There was a small lymph node but he didn’t think significant but the oncology team will prob want to look at it.
A chat with onocologist said I would be offered a hysterectomy. And I’m guessing it’ll be a radical hysterectomy?? I don’t suppose they’d be any chance I should keep my other ovary?
I’m 37 and a mum of 2 bEautiful babies 2 and 6. My eldest is autistic. I lost my dad at 60 last year to cancer and my father in law to cancer in April. This all feels very overwhelming.
I’m scared for my health for my babies. I’m desperate to be here for them for decades to come. They are my world. I’m trying to be rational about it being very early. And the small lymph node is ok and all the signs show high confidence in no spread. All the other biopsies for the first op (washings/ fluid / Fallopian tube) were all clear of cancer.
I’m scared that a radical hysterectomy will change me - my brain (how can I maintain a demanding career?), my physical self will
I still be able to be fit and run around after my babies(my autistic son needs lots of physical support), my relationship - will my husband still find me attractive, will I still want/able to be intimate? Very nervous about what the procedure and lack of hormones will do to me.
Most nervous about this little mention of the lymph node. Desperate to know with certainty that there’s no spread.
Be amazing to get any words of support. Any experiences particularly from women around my age with similar cases and after a radical hysterectomy.
This little group already feels like a warm hug. Sending love to you all x
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Katieannelouise
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Sorry to hear that you’re going through this. If your remaining ovary looks ok you may not need a radical hysterectomy but may just be monitored. Discuss this with your oncologist. Your cancer was found at a very early stage and your prognosis should be good.
Like you, I had a giant cyst (over 40 cm) and felt a lot better after my surgery. I had a radical hysterectomy, removal of part of my omentum, peritoneal strip, removal of some lymph nodes, biopsies, abdominal washings etc. All done in the first operation. I was terrified before my surgery so understand the stress and worry of further surgery so soon after your initial surgery.
I can’t comment on surgery induced menopause as I was perimenopausal. My full menopause symptoms have been minimal, maybe I’m lucky. The worst was vaginal atrophy but I can take vaginal oestrogen for that. Check with your medical team whether you’ll be able to take some firm of her. My ‘brain fog’ was worse before my operation due to worrying about my symptoms. Once I had surgery and diagnosis I knew what I was dealing with and felt ‘I can do this’.
Regarding physical fitness - I felt so much fitter after my surgery. My giant cyst had been affecting my ability to do lots of things. It had also resulted in discomfort when being intimate. My partner doesn’t find me any less attractive post surgery, although I feel very self conscious about my scars. Regarding intimacy, it feels ‘different’ but somehow better.
My cyst was 20cm and I felt the discomfort greatly. 40cm is huge. You must’ve been so very uncomfortable. I interested at some pint ti learn if the cyst came after the cells went funny or before
certainly having real brain fog at the mo it’s very overwhelming and I’m very anxious about health and have a extreme hyper focus about health I’ve being actively doing so much to avoid getting cancer it’s been my worse nightmare so this happening is damaging my ability to think rationally and thrown me off the ‘in control’ position that I’m most comfortable in
thanks for sharing your experience it’s been very reassuring to me I wish you good health and thank you for your message it means a lot xx
Sorry to hear you are going through this. I was 36 when I was originally diagnosed (just celebrated my 63rd birthday). My staging was a 1c (but since my surgeon did not take lymph nodes in surgery, they said I couldn't be accurately staged). I had a complete hysterectomy. I had a two- and four-year-old at the time of diagnosis. I had 6 months of chemo - back then the choices were intraperitoneal chemo or IV . We went with the IV. You are fortunate with a 1a diagnosis. If it were me, I would get the other ovary out and anything and everything else. You will have some side effects, but you will have saved your life. Good luck!
I can’t tell you how much strength your message gave me. Thank you so much. Your story made me have a great attitude today which gave my children a great day and helped me be positive. Thank you x
I had completion in March 2020 when I was 49 and I have never looked back. It was practically painless to have it done and since I have had no issues, no hot flushes, no bad moods and I was completely ZEN. Had I known how good I felt after, I would have done it years ago.
that’s amazing ti hear how zen you felt. Funnily enough my nan told my nan today how everyone she knows who’s had one said what a great thing it’s been for them. This is so interesting as I suspect my hormones have been out of whack for a while so some zen would be amazing! X
In 2019 I was diagnosed with 1a/b O’C. At 54 , it was a rare and aggressive one clear cell. After talking to my oncologist about taking just the one ovary verses doing a whole hysterectomy I went for it. Since I never could have children and I was heading into menopause it was the smartest choice for me I went through 6 rounds of hard core chemo and today I am on a hormone blocker . I would say with having your children and all be there for them. Even at early stage our bodies can still produce the ugly cancer cell. You are young and healthy and will be fine. God bless you and give you peace in your decision.
thank you so much for sharing your story and your kind words.
Interested to understand that if they removed everything, what is the post surgery long term hormone blocker for please? Apologies for my naivety here this is all very new to me x
understandable! I had so many questions and no one to ask at the time. They did a full hysterectomy and the letrozole (blocker) keeps tumors from developing.
Welcome to this forum, though sorry you had to join. I'm 29, just underwent a radical hysterectomy, lymph node removal, removal of omentum, and peritoneal biopsies after a 5cm cyst was found on my left ovary and my CA125 came back over 800. I was told during initial biopsy (in surgery) that it was "at least borderline" and I'm waiting for final pathology. I think the most important thing is what you want treatment to look like. This is your body - if you want a fertility saving surgery that is well within your choice! I initially choose to have both Fallopian tubes and my left ovary removed on my surgery - and stated if it was dodgy to remove everything. I was already infertile (found out when I was 14) and I lost my mom to Ovarian Cancer - which is why I made that choice.
I will say everyone's' experience with surgical menopause is different but I'm currently having no fun lol. Hot flashes followed by cold flashes. My mood is all over the place (though maybe that's the normal "you may have cancer" response). Surgeon stated that there are options available (HRT or non-HRT options) and will be discussing those at my post op.
Gosh I’m so sorry to hear what you’re going through at 29. And the loss of your mum. This must all be so triggering of the grief for you. You sound so so brave. I really appreciate your message to me during what must be such a hard time for you. I’m so so desperate be here for my kids for decades to come that I’ll do whatever’s needed. And I’ve heard more stories today that are not so negative about surgical menopause. I think my hormones have been imbalances for a couple of years so have suspected I was early perimenopuasal. I think I’ll go for everything coming out.
Wishing you lots of rest and excellent recovery and good health going forward xxx
My suggestion is to think about talking with the Ovacome Support Team on 0800 008 7054 whom many here have found both knowledgeable and supportive.
In addition, Ovacome has information on surgical menopause ovacome.org.uk/pages/search... and also runs a Younger Womens' Group but if this feels relevant to you, they will share the detail.
Keep being kind to yourself and that will help with the loving of your precious family. Warmest wishes, L x
thank you. I have applied to join the group and will call the charity on Monday. I feel so grateful to have this support here already. It’s so emotional at first. I’m used to being a capable person, that looks after others I don’t want to be the patient. I should be looking after my mum not the other way round. I jist want to get to the point of knowing everything in detail with a confident plan. The mdt meeting isn’t until next Friday and I went private with the cyst removal so im feeling very out on my own currently. Actually can’t wait to get into the nhs pathway and feel looked after. Thanks so much fir your message x
Gosh, I recognise so much of what you share about your emotions, feeling that you are a capable person in 'normal life' and so your brain moves to making a plan with which you can feel confident. If it helps, I found asking questions, listening and checking I'd understood correctly and then working on and regularly refining 'realistic and well-formed outcomes' helped me to feel that whilst I could never be 'in control', I could take charge of how I dealt with each situation that arose. More warm wishes, L x
Just thought I’d say Hi, I have just (2 weeks ago) undergone a full robotic hysterectomy at the Christie, following a diagnosis of mucinous ovarian cancer (a rarer form I believe) currently staged at 1C and pending results for full staging. I had a 5cm cyst, found by chance (no symptoms), that following bloods and MRI, was believed benign and only removed as I am a keen distance runner and was thought to be at higher risk of torsion if left in situ (which was an option due to the firm belief it was benign) anyway, thankfully, I opted for the removal because on examination, this was discovered, much to everyone’s shock. Surgeon had said everything looked perfectly normal in my pelvis and in what he removed. They believe it would likely be a 1A, but when the left ovary was initially removed, they bagged and burst it to remove it and so apparently automatically becomes a 1C as they cannot confirm in lab that there was no cancer on the outside, due to the burst state.
Anyway, here I am 2 weeks post op, feeling well (my fitness levels were very high pre op, so I’m already walking 4 miles per day….carefully and split into 2 walks as they’ve put me on a 3 mile limit for this week, haha!) experiencing cold night sweats and maybe a little dryness, but nothing else so far (touch wood!). My surgeons have said that at this time (again pending results) they see no reason they won’t put me on Oestrogen Therapy, which they would look to start at week 8. I do not have children, by choice and lead a life a little more like a 23 than 43 year old. I am into feeling fit and looking good and youthful, love my collagen and skin care and am not ready to feel “at that stage” (not that anyone is I suppose!) so it daunts me too. I’m also in a new (10 month) relationship….he’s been amazing….but I have the “will he still fancy me?” “Will I still enjoy sex” fears. Not helped by my current stomach full of holes and stitches!! But I reckon it’s better than the alternative.
I am sorry to hear all that you are going through. I was 41 when I was diagnosed with stage 1a ovarian cancer. I had a huge 18 pound cyst and had a radical hysterectomy followed by chemotherapy ( just Carboplatin)That was 26 years ago and although I have had one or two problems there has been no recurrences and I am well. The doctors advised to take HRT which I did for 2 years and then I decided to use an alternative and I didn’t experience any problems.
You may find the younger womens group that Ovacome runs once a month online helpful as you can meet others who have the same concerns when you are under 45
I had two children aged at the time 13 and 15. I do understand that however it looks positive on paper I still worried a lot but that’s normal. I don’t think everyone understood that because it was early stage.
Hello, I know it can seem totally overwhelming and scary. I’m 38 and have stage 3c. I had a hysterectomy in July. I was pretty fit beforehand and I was amazed at how quickly my body has healed. I took it slowly to begin with but I managed little walks with my family. I have a 9 year old who could understand that I wasn’t able to do everything I normally could. I was fortunate that my parents could help and my husband was given some leave from work. I’m now 13 weeks post op and I can usually manage a couple miles a day and get on with everything as usual. I’ve just had my third round of chemo so I have days where the energy levels are low but I personally find it better to keep myself entertained by doing a could small jobs. It’s really amazing how much you can do when you have little people to keep you motivated and give you a reason to just keep going. Sending lots of love Kelly x
Hey, am so sorry to hear you're going through this. I was diagnosed with 1a endometrioid cancer at 31 and had fertility-sparing surgery. I've had regular monitoring since and had my precious little boy the following year, so I've been really fortunate.
This forum is so great for communicating with others who understand how you're feeling. I've had a few scares since my diagnosis, it's so hard to not worry about the worst case scenario. At diagnosis, I was told that some ladies opt for completion surgery after they've had their family, so that is something I think about now and then - is the anxiety of the scares on the back of the cancer diagnosis really worth it? Sending love and support to you. Xx
I’m sorry for the mental, emotional and physical trial you are facing. It sounds like a hysterectomy would be worthwhile, although I do not yet have experience. I’m having surgery in two days to remove one ovary and Fallopian tube, but considering having it all taken out. My mom did when she was in her 30s due to a huge cyst. I’ve had ovarian cysts and ruptures for 13 years; I’m 46 and have four kids now, and I’ve been having extreme fatigue and persistent ovarian pain for months.
I wanted to ask what prompted your original surgery if nothing was seen on CT or in bloodwork. With a history of cancer in my family, I’m concerned about the potential of what might be found in my surgery this week. Nothing showed up on a CT (without contrast) or a transvaginal ultrasound—except a little fluid in my abdomen—but my symptoms have prompted a diagnostic laparoscopy, and for sure removal of the one ovary etc. I haven’t had CA-125 testing yet.
I hope you come to peace with a decision soon, and best wishes for your recovery and a bright future with your precious family!
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