Hi, I was diagnosed in July with 1C Mucinous OC with a few clear cells also found. It was a bit of a shock diagnosis (for consultant as well) as after bloods and MRI etc, nothing appeared sinister. The original affected ovary was only found by chance (random unrelated question to GP and no symptoms) and actually only removed as I’m a runner and was at risk of torsion. Anyway, one shock diagnosis and now a full robotic hysterectomy later, here I am, starting 6 cycles of Carboplatin on Nov 10th. Thankfully, no spread has been found and the surgeon was of the opinion it was a 1A until the ovary and cyst were burst (in bag) to remove by keyhole during the original surgery, therefore, apparently as they cannot ever say the cancer hadn’t breached the ovary shell, they automatically grade 1C. They were undecided originally about whether I’d need chemo, but I think are going with it as a ‘belt and braces’ approach.
I was fine at first. Positive, feeling lucky about the early diagnosis and looking forward, feeling brave. Since the surgery, I’ve become very anxious. Mainly based around health. I’m driving myself insane overthinking EVERYTHING. I feel like I’m becoming obsessed that anything is going to cause cancer (any type!) or that things I’ve done in the past may have put me at risk. Just normal things like wearing fake tan, using collagen supplements etc. nothing random or “risky” (I’m a bit safe and boring), just everyday life. I’m very anxious and tearful all the time. I feel like I’m mourning the carefree girl I used to be and I’ll never have fun or really enjoy anything again. I’m 43 with a formerly very youthful outlook, like to look good and invest time and money in beauty products and grooming and socialising, running marathons, going to the gym etc. Now I just feel anxious and down all the time and I can’t see her ever returning.
I am seeking counselling (not started yet) and my gp has prescribed some anti depressants….but guess what….I’m too anxious of the possible side effects to take them. I’m going back to talk to then again next week. I’ve also just downloaded the calm app and used that this morning which helped.
I am a little bit of an over thinker by nature, but no previous mental health issues.
Has anyone else been through this? Any suggestions that can help? Any ideas of hobbies I can do while I’m off work to distract myself and keep my mind busy and not wandering down rabbit holes on Google (I do a job that would potentially put other people at risk of harm if I’m not myself and it’s shifts, so now isn’t the time to try going back).
Sorry for the essay.
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Frankie1405
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just to wish you good luck on your journey I thought I had lost me in amongst it all but me is back slightly different but living my life to the fullest that I can some days are a bit of a struggle cos not as physically strong as i was but I am alive and that is a bonus just waiting a month for last scan results x
There probably isn't a Survivor on this blog that hasn't experienced this especially in the early days. Let me start that you are very blessed (although it doesn't feel like) to be 1C. This month was 1 year of being a NED Survivor 3B like yourself I am an over thinker on a good day I went on anti-depressants and counseling and they helped tremendously since I was also having anxiety which was the worst try to not over read (easier done than sad) all the the stuff on the internet this studies are typically 5 years old. Keep in mind that you can always seek a second opinion most Gyno/Onc's encourage it chemo depending on the sub-type I was told was a bit like insurance actually for me the fear outweighed the treatment I also used a cooling cap which I only lost 10% of my hair, that was important to me. I was just like you I the beginning of this journey changed all my personal products must of read 30 books on nutrition policed everything I put in my mouth I was pretty much ate healthy not a runner but exercised and stayed at a good weight. I've relaxed a bit on the weekends I treat myself food and a nice glass of wine not as paranoid that anything that I put in my mouth or on my skin will be my demise hope this helped a bit!
Your post reminded me but also comforted me Frankie1405. I too am feeling pretty anxious this weekend (scan on Monday). I remember so well in the early days of my journey just thinking every day that I was going to die.
How can we deal with anxiety? It just seems to be overwhelming.
Your idea about a hobby might be a good thing to do. My happy place is going to see my friends elderly horse. He never asks me how I am, our conversation is always about what he is going to eat next and whether I have brought treats! But somehow it makes me feel like me.
Try if you can to do something you love at least once a day, even on chemo when you are feeling rough watch a favourite TV programme or listen to your playlist.
Accept that you will be anxious and upset but you can also have good times while all this is going on. xx
Hi Vicki, I can relate to everything that you have posted and I actually feel very fortunate that my ovarian cancer was picked up at an early stage. (Stage 1c (the C due to the cyst rupturing during surgery)). I did wonder if you have had your vitamin D level checked recently? Ideally it should be approximately 125 nmol/l and having an adequate amount of vitamin D can lift your mood so that might help. Perhaps have your vitamin D level checked first before considering going on anti-depressants but what you are experiencing is normal and I think most women think like you are doing now.
Re your chemo I also just needed single agent Carboplatin and I didn't need the anti-sickness tablets that they give you to take at home (and instead just took a polo mint) as the constipation from the Carboplatin was horrendous. Perhaps take the anti-sickness tablets at home the first time and then see how you get on and discuss this when you have your second chemo.
Thank you, that is interesting about vitamin D, I’m fair skinned and not a sun worshipper, I walk and run but usually fully covered so unless I’m getting enough from diet to top up, I could be lacking.
I’m also being put on oestrogen therapy from next week (no oestrogen receptors we’re found on my cancer, so they’re happy it’s no increased risk) so I’m hoping that will help. Hopefully I’ll sleep better without night sweats waking me up and giving my brain the opportunity for another scroll through the ongoing nightmare!! Xx
Ahead of having my chemo my vitamin D level was checked (it was fine but I do take a daily vitamin D supplement) and my magnesium level was also checked (this too was fine). Hopefully before you start chemo you will have both of these checked. If your vitamin D is low and you do decide to take a supplement then be sure to also take vitamin K2 (MK-7).
If your magnesium is low this may be one of the reasons why you are not sleeping well and if this was brought up to a normal level (perhaps by taking magnesium citrate) you may find you sleep very well.
I am not medically qualified but if I was in your shoes ahead of taking anti-depressants and oestrogen I would first bring my vitamin D and magnesium level to the correct levels. I had a surgical menopause last October and am not experiencing any menopausal symptoms whatsoever and sleep extremely well and you may find that those two vitamins help you,
If you are still struggling then perhaps consider taking them but why not see how your body is first otherwise you would never know. Even if my ovarian cancer was not oestrogen receptor positive I would not wish to take oestrogen. I'm sure it won't increase your chance of recurrence but when one in eight women get breast cancer that is too high a proportion for me. If you go on oestrogen then be sure to have regular breast screenings and find out if you have dense breasts.
On a slightly separate subject be sure to request genetic tests at your hospital (i.e. BRCA and Lynch Syndrome). Your oncologist should be able to request these for you.
I say all this to try to help you but I also understand if you have a difference of opinion re the oestrogen xx
Thank you. I’ve had to start taking the antidepressants, I’m struggling too much and I know they will take a while to kick in, but I can’t carry on like I am, hopefully I won’t need to stay on them long term, just to get me through this patch. But I will have my levels checked for Vit D and Magnesium.
I have already had the BRAC test and am awaiting the result in a few weeks.
Re the oestrogen. It is something I will discuss with my Dr, when I have the conversation around the oestrogen and what is available etc….the NHS website on the benefits and risks of HRT says there is “little or no change in risk” of breast cancer with oestrogen only HRT. It does say there may be a small increase in risk with combination HRT. I think for me, at 43, I’m also taking in to account that with some luck, I need to protect myself from other vulnerabilities attributed to a loss of oestrogen under the age of 45 and increasing age, such as cardiac disease, osteoporosis and dementia. It’s still not an easy decision and definitely one I will discuss further before starting Xx
Hello Vicki— I’m so sorry that you are having to deal with OC and that it is so worrisome for you. I can truthfully say that the teal ladies on this forum understand how you feel. It’s all a bit of a roller coaster ride. We comfort each other when unwanted test or scan results are received and we cheer each other on and share in the joy of those who post good news. As to medication, I take an anti-depressant daily and sometimes anti-anxiety medication and have benefited from counseling with a psychologist who only treats cancer patients. I’m 71 and was diagnosed in 2020 with stage 3 OC. I’m on my first recurrence, but with the help of my therapist, exercise and the medication, I find that I still manage to enjoy the days. You have challenges ahead of you, but you are young, a runner and your cancer was caught early. I suggest you look into recent studies that tend to show a correlation between cardio exercise and weight training and a longer remission. My hospital’s lot integrative medicine doctor said I can do time-restricted eating and said she does this herself. This is not a diet. You simply restrict your meals to a 6-8 hour period each day. I joined a nearby art museum and walk around and climb the stairs there 3-4 times a week. It is a lovely place with many beautiful objects. It brings me peace. I do hope you find ways to make this ride a less bumpy, Vicki.
I'm not sure there are many of us who have not struggled with anxiety at some stage with this diagnosis and it manifests itself in all different ways. Also, I think media and society sometimes imply we have somehow caused our cancer.
Counselling sounds a good idea, some of the cancer support organisations offer this.
Hobby-wise I have found animals soothe me, horses and I have recently got a cat. I took up online painting classes with The Artery, colouring books. Also mindfulness and a healing meditation that a friend recorded for me.
I have cats at my parents house (4!) and I’d love one here, but I feel I’m too near a road and when I’m working, out too much to have one, it’d have to be two, haha! Realistically, in the normal run if things, I’m not home enough for a pet. I have considered borrowing a dog from a friend to walk with and for company through chemo….but I’m not sure if it’s a good idea yet.
hi sorry you’re having to go through this. In answer to your question … Has anyone else been through this? all of us!! I’m 51 & like you very young in outlook. This horrible thing can turn us into the most paranoid beings you can imagine. For me I decided that this bugger was not going to define or change me (obviously it does a little). I invested a small fortune in false eyelashes, stick on eyebrows & glam wigs. I pamper myself with masks & skincare and enjoy all of the days out with girls lunches & times spent with my grown up children. I’m even dating. I tell myself this is a phase & take each day at a time. If I have an off day I allow myself that & pick myself up & brush myself off ready for a new day tomorrow. I have my last of 6 Carboplatin treatments next Friday (hopefully) & strangely excited about it. I really hope all goes well for you. So much of this is what’s in your mind as well as your body. Stay strong & you’ll surprise yourself xx
After a while I seemed to make peace over it and become a bit more accepting after similar to what you describe. Daily exercise of some description probably helped the most and after three months I finally started listening to music again and looking forward to my new playlist ‘Get up mix’ arriving on a Monday. I got the Calm app but didn’t use it until now. I used to do a daily plan / repetitive tasks/ puzzle book/ learn something new, painting by numbers was quite amazing actually. It will take time, be patient. The Daily Calm brings you into the present each morning with a return to following the breath.
This is exactly what I need to do. I need to get to a point where I make peace with it and get back to the state we all live permanently in…that life contains risk, we cannot avoid risk, we just have to use our own risk assessments of things to bumble through. We all know we could be seriously harmed or killed getting in a car….in my line of work, I deal with that daily….yet I get in a car daily without panicking. I used to be scared of flying….but I wanted to be cabin crew so badly (in my twenties) I made myself do it and loved it! I feel like my sense of risk has been ridiculously kicked up 10 years and I need to find a way to get the reasonable thoughts back.
Painting by numbers sounds good….or maybe learning a language. I have asked my employers to consider me for some project type work I could do from home to keep me occupied. When I’m busy or out walking, my thoughts are much more controlled (and I’m not on Google!!!!)
That’s so true!! I went away for a night a couple of weeks ago, on the Sunday, I felt really positive and strong and a little like the old me!! I should do it again Xx
def do it again. We had a few short trips away during chemo - third week - and generally went away after medical appointments so the medical appointment was just done on the way to a night away!
maybe try to focus on the positives: your prognosis with stage 2 is infinitely better than that of most women with ovarian cancer because they are diagnosed at a later stage. You may well never recur, you may have only one line of chemo, you may well live a very long, pain-free life. You are in some ways, very fortunate. I was diagnosed stage 4 age 44 with with ascites & effusion to boot (lucky me!) & have only been NED for five months since Oct 2020. I will never be out of treatment & will not live a long life (although even though seen from a global perspective, what constitutes a long life is all relative). What’s helped me a lot is focusing on what IS good in my life & the fact that I am actually much luckier than many other people on this earth, even though that might initially not seem the case. Taking the focus off yourself by reading some of the posts here from other women may also help you get some perspective & make you less anxious.
I do try, I know I am lucky in many ways and currently I’m so much a better position than a great many people and I do try and focus on that when the anxiety will let me Xx
yep! Yep! Yep… I was diagnosed with 1c clear cell O’C in 2019 full laparoscopic hysterectomy. I was in great shape and healthy, felt like I had done something wrong as well. My oncologist said it was aggressive so we treated it aggressive. Got done with chemo just in time for covid. After a year and still napping and exhausted plus I got the gift of neuropathy in my feet , I was feeling pretty good . Found a golf ball size knot on the left side of abdomen and told my doctor and oncologist . Well I had a reoccurrence we got it out within 2 months and it had grew fast. It never showed up in my ca125 only by ct scan , can they locate this type of cancer. Which heightens the Andy. I think by the oncologist doing the laparoscopic surgery mine had burst which sent it to my abdomen. I take letrozole now every day for the next few years, keeps tumors at bay. So far I am feeling better and stronger. It is normal to feel like you do and just so you know the clear cell caught early like ours is treatable. Try not to look for it but be vigilant on how you feel. My symptoms were , tiredness, feet felt swollen and of course I felt the tumor on my side . I still to this day hunt around on my abdomen to make sure I am well. Trying to accept the new body I am in . Fight for your health and stay on the positive that you will be fine and healthy. What you think has a lot to do with your body. Love it and thank it for being struggling. There’s my essay. God bless you sister.
Thank you. I think my tumour was primarily Mucinous with only a few clear cell cells infiltrated (that’s how it’s written on my post surgery letter) so I’m hopeful that the clear cell cells (which I understand are the more aggressive of the two) were later to the party and hadn’t progressed too much (I suppose I don’t know that’s true, but that’s how I’m thinking if it) Also I hope that given the affected ovary was found and removed 3 months before my hysterectomy and then with subsequent clean pathology from that, that there is some hope that in those months, nothing seems to have locally taken hold. Again I know it doesn’t mean it can’t pop up in future, but you have to look for the positives don’t you! Xx
I'm sorry to hear that you're experiencing anxiety, but I'm pleased you've had some helpful and kind responses from forum members already.
I just wanted to add a couple of resources that you might find helpful.
You mentioned hobbies: We have several free groups that focus on doing activities such as crafts and exercise, with facilitators that are experienced in modifying movements etc as needed.
We have a number of support groups, including locally-based and national groups. Some are more specific and you may find helpful, for example the under 45s group or the rarer ovarian cancer group. You can read more about all of these here: ovacome.org.uk/Pages/Events...
We also have a number of resources around anxiety and looking after your mental health: you can find some recorded webinars and podcasts here:
And finally, our support services are here if you'd like a chat about any aspect of this experience.
Our support line is open from 10am-5pm Monday to Friday on 0800 008 7054, and the team is also available over email through support@ovacome.org.uk or over instant chat on the website.
Hi Frankie, I can't add anything to the advice already given. Especially the anxiety of every possible symptom (hangnail? Sure, that means the cancer's back!). But by way of encouragement, I was diagnosed at the age of 48 with Stage Ic ovarian cancer, mixed endometrioid and clear cell, with a side of endometrial cancer, unsuspected until the pathology results came back. At that time, I was offered carboplatin alone or with taxol, and I didn't feel qualified to make the decision, but my oncologist made it for me, after taking my allergy history. Why was it different then? Well, that was back in 2006 and I've been NED ever since. 16 years cancer free. I've had my ups and downs (a spell on anti-depressants, which helped, and an argument about HRT which I eventually won). Sending hugs!
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I have had horses most of my life, so that made me smile. It’s true, they are very therapeutic.
LGSC 1c
I am a bit confused 
Glad to have found this forum
I'm new here... My partner was diagnosed with Ovarian Cancer aged 30-31 / I'm trying to find a support network for Men?
Update. Still in hospital
