I’ve now received the “all clear”, but the fear is still there. Has the cancer really gone? Will it come back? When will it return? Will I catch it in time? How can I go through all the treatment again?
How do you cope with these disturbing thoughts? I’m told to focus on the positive, which is often easier said than done. It’s hard to live a “normal” life when these intrusive thoughts come up and I’m honestly finding it hard to know what to eat because I’mscared that it i do one wrong thing, the cancer will return.
Any ideas?
Many thanks 🙏🏼
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Hailun
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What your feeling is very normal I am 20 months NED the fear of recurrence does get easier with time as you try to find the new normal I follow for the most part an anti estrogen diet but have eased up a bit and enjoy a day off and have a bit of fun. I still get a bit anxious with each checkup and blood draw then it passes and I can exhale for 3 more months. It helped when I got back to exercising and activities try not to over read statistics as they are old and every case is different and don’t hesitate to see a counselor to help you transition if need be. Hugs from Chicago
I guess it takes time to adjust. I guess it doesn’t help that I was suffering with C-PTSD 5 years prior to OC diagnosis, so the anxiety is higher than ever. I’m on the waiting list for psychotherapy again, but have begun to exercise and also follow a low estrogen / low sugar diet. I guess time will help. Hugs from Germany
I actually never had PTSD but did experience it mildly after I completed treatment as so much changes in your world after this journey I did see a therapist thru the cancer center to help me process the new normal so much had changed the catalyst was my Best Friend of 40 years blowing up at me as I expressed that I needed space she was always a bit needy but I was in a different place needless to say that Friendship went by the wayside and didn't end well but I was honest still bothers me to this day but one has to move forward hope this helps.
Do you mind if I ask what is a low estrogen diet? Is it about reducing fat in the body? I thought as ovaries are removed in surgery, our estrogen was low anyway?
Not at all the pathology report typically indicates if the tumor is estrogen or progesterone driven mine being Endometroid was estrogen positive. I initially bought the "Anti Estrogenic Diet" book off Amazon cruciferous veggies are great which luckily I like broccoli, brussel sprouts, cauliflower, organic berries, if you do eat meat make sure its antibiotic free I stay away from processed foods unless a special occasion green tea is also very good.
Thank you for that. Yes, my tumour was ER and PR positive, though HGSOC, not endometrioid. I follow a manly plant based diet so hopefully I'm ok. Thank you for letting me know. xx
A plant diet is great that's what I pretty much follow also if I do have any type of protein its typically wild salmon I've read that Omega 3's are very good I snack on walnuts. Your doing well!
Yes, I follow the same diet as Saintgermain. My OC was estrogen positive. Interestingly, even when the ovaries are removed (or still there but unable to produce estrogen for some reason), the adrenal glands take over. The adrenals can’t produce as much estrogen as the ovaries do, but still enough for the body to function normally. Because of this and my OC being estrogen positive (I’ve been estrogen dominant my whole life - had also endometriosis from age 12), I have cut of all non-plant based sources of estrogen, such as milk products and soya. I do eat the occasional egg for protein as a change from oats or salmon.
True. I have no fat cells left! 🙈 sure they’re in there somewhere, but I lost weight after my surgery and starting my new nutrition plan straight away. I’m now 56 kg/ 8St.8lb.
Hi from Madison, wi I'm going to start an exercise program here now too.. I'm hoping it will help with anxiety of it returning. Try to stay busy and read. Thank you for your suggestions!
I live in Saint Charles Illinois my Moms side of the family is from Black River Falls I’m 20 months out NED for the first year I had a lot of anxiety I’ think when your going thru treatment your on autopilot I did see a cancer counselor for a few sessions which helped I assume you went thru UW which has a lot of resources yes exercise does help plus it helps in my case to get rid of estrogen bonus!
There are a number of books concerned with what happens after you get the all clear. It seems you are not alone with your fears. One you might like to try (if you haven’t found it already) is, ‘The Cancer Survivors Handbook’ by Dr Terry Priestman - and you might be able to find a free counsellor through one of the cancer charities while you’re waiting for your appointment.
Hi Iris, thanks for the book recommendation. I’m always interested in reading. I’ll look this one up. I just started reading another book recommended by this group - The cancer survivors handbook.
My appointment for counseling also came through for mid June 😊
Thank you I will look into getting that book. I should have done it right away. I have been a pain for my dear husband as fear interrupts my happiness. He feels it too when I am anxious. Thank you again
I agree with everything shared so far. However many years you survive I have found the anxiety returns incredibly quickly as the six monthly blood test & CT scan looms and am waiting for results (ten years since my last ovarian cancer recurrence and two since the bowel cancer - no connection - was diagnosed). I found mindfulness meditation 13 years ago after my oc diagnosis and I still practice it through an App; I know it has helped me 'watch' my thinking and my emotions with acceptance and not always get washed along in the storm.
I imagine that having your history will mean you recognise anxiety in an instant and 'it' knows how to 'hold your attention', so anything which helps take your brain to nourish joy and anything which helps you feel physically stronger will, I hope, build your resilience to help 'balance' the anxiety.
No, surgery successfully removed all the ovarian cancer at the recurrence and the bowel cancer was caught very early so am blood tested and CT scanned for both each 6months. If the bowel cancers returns, it is a type which responds better to immunotherapy than chemotherapy which is a huge relief as I could not face more chemos after the two full doses after each surgery for ovarian cancer. But no meds….just focus on ‘growing healthy cells’, keeping active and enjoying each day that I can. I am sure working at being positive cannot kill or cure cancer but it helps makes the most of the days I have…which, of course, like everyone , I don’t know is few or many more years. Warmest wishes. And thanks for asking. X
thank you for your response Lesleysage, I am very happy for you; that is a wonderful success story. I will try to focus more on the positive things. Very good advice.
Do you have access to a survivors group therapy? They usually do not cost anything.
Hey, totally sympathise with you. I'm on my last chemo next week and my scan has been booked to make sure I'm NED My CA125 is 10 but all I can think about is recurrance. I too have terrible anxiety so see a counsellor now to help and its really working.
Worry and anxiety is all part of this awful journey we are on. Please dont hold your feelings in, talk to people and remember how brave and amazing you have already been x
These feeling are normal but will ease as time goes on. You get to just get on with life and eventually you find you don't even think about it. The first day I didn't think about it was a surprise. When a friend was explaining a worry to me and said that it was nothing compared to what I had gone through, I honestly didn't know what she was talking about until she said my cancer.
You can worry about everything. If I go out the door will I get run over or attacked but we put these things to one side most of the time. The same will happen with this worry. You may feel very anxious when your check-ups arrive but again this is natural.
I wish you all the luck in the world and hope your pain reduces quickly. xx
I also did all of the above and many months of counselling too. I also now have medication prescribed by my oncologist to help with the anxiety. I was very reluctant and refused for a long time - but it really does help, along with other complimentary therapies, and I am now interested in my old activities again. Take care xxx
I think the answer is that we don’t cope with those fears. As others have said, we get busy to distract ourselves, we get good at putting things to one side but the mere whiff of a hike in ca125 levels and the old demons are off.
I did the Hope course run by Macmillan, which I know many find valuable but to me it felt like papering the cracks. Personally, because my cancer has already returned twice, I live with great uncertainty and great certainty…about how this is all going to end.
Curiously, since I allowed myself to think that I have found it easier to live with xx
Thank you so much Lyndy for your honest experience. I just googled the Hope course, but I don’t live in the uk so the Macmillan support services are not an option for me. It is helpful to know that so many others really do understand how I feel, though I wish no one would get cancer. Xx
Thank you for your post. I’m really sorry to hear that you have been experiencing difficult thoughts and are concerned about your cancer returning. I can see that many members of the forum community have shared their personal experiences of this with you which I hope has been helpful.
I wondered whether you have had an opportunity to discuss how scared you are feeling with a member of your clinical team? They should be able to provide you with personalised guidance and refer you to local support services to help with what you’re going through. We are also here to support you to plan or prepare for conversations with your clinical team, so please don’t hesitate to give us a call on (+44) 800 008 7054 if there is anything you would like to talk through.
In addition, I wanted to share an Ovacome webinar recording about managing anxiety after treatment ends and coping with the fear of recurrence, with Dr Jo Ashcroft – a Macmillan clinical psychologist. This covers some of the feelings that people may experience at the end of ovarian cancer treatment, strategies to help manage anxiety around the fear of recurrence, and can be found here: youtube.com/watch?v=synCBam... .
We have an information booklet about managing anxiety, including a section about finishing treatment which I hope may be useful. This also includes a list of other sources of support and can be found here on our website: ovacome.org.uk/coping-with-... .
Our Staying Connected programme consists of a range of support groups, workshops and events for those affected by ovarian cancer, including regular yoga & relaxation sessions, crafting and creative writing. These are designed to support wellbeing, with more information about the programme available here: ovacome.org.uk/Pages/Events.... You would be really welcome to join us.
If you would like to have a chat about any of these resources, our support services or anything that’s on your mind, please do get in touch - We are here to support you. You can call us on (+44) 800 008 7054, email us via support@ovacome.org.uk or send us a message directly through this forum if you prefer. We’re here Monday – Friday, 10am – 5pm (U.K time).
I think of all of us survivors can relate to the underlying fear, once we have had our first diagnosis. Mine has come back four times, but I have been fortunate to knock it back each time. Maybe some antianxiety meds would help you relax a bit?
So sorry that yours came back four times! Was that in quite a short period of time if you don’t mind me asking? Thanks, medication has always been an option for me anyway for the ptsd, but I’m loath To take it.
Oh yes! I'm feeling the same way! And I was HRD negative so Dr didn't want me on maintenance drug at this time. I don't have anything till August. I feel I should go in for a blood test now to make sure as my last chemo was may 4th. I pray daily for all of us that it will not return but there is a fear a may..I guess this is normal to feel this way?
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