How do you deal with fear of recurrence?

Hi Mins,

Glad to hear you are in remission.  There is no easy answer to your question I think.  I am same stage as you, 3c, just finished my 6th chemo and am having surgery beginning of August.  My tumors have shrunk and all is stable in there, I feel really well and ready for the operation.  I can say that 7 years ago I had breast cancer (not related to this diagnosis not BRCA) stage 0/1 so a bit easier to treat, but non the less traumatic worrying about re occurrence.  I try to put it in a box in my head and get on with life, I have annual mammograms, and check my breasts every week.  I am going to try to use the same 'box' system when my  treatment ends.  My hospital have told me that after treatment, I will have 3 monthly CT scans, and will be monitored for 5 years so  hopefully if something pops up,  it will be treated swiftly.  I think if you worry too much, then cancer has won.  I still panic if I get a twinge anywhere, I don't think anyone who has been through cancer doesn't worry, but also remember if the worst happens, the medical profession have so much they can do nowadays, there is always something new happening, my friend had a 10 cm breast lump growing into her chest wall, has been on chemo for over 2 years, and went on a drug trial 9 months ago, the tumor has shrunk to 2cm, so they can now operate on her without a mastectomy, or damage to her chest wall.  I hope others will reply to you as well with their coping mechanisms ,  but remember, if you are having a bad day, there is always someone on here to chat to.  

Take care and stay safe, enjoy the summer.

Love 

Hi @mins   and all

That could been me writing. I too am living my life in fear of recurrance. I know i shouldnt but do not know how to not. I am totally convinced something is wrong now. I have my three month check in August.  I finished Avastin in april. My stomach feels heavy and i have never been so fat.  Then other days i think i am imagining it. I think if all is ok with my ca125 blood  test then it will be like a big weight lifting off me. I was so strong and happy and positive all through the 15 month of treatment. I just don't know whats happened to me. I am sure i will be fine after my appt 4 aug. Phew.  It helps just writing it down and telling people. I cant tell anyone else as they dont understand

Hello Mins I'm so sorry to hear you are going through this. Although I do not have direct experience of ovarian cancer myself (but do have a family member who is in remission and have had a health scare myself recently) I do have experience of anxiety. There is a group on MacMillan called Emotional issues and many people on there are coping with anxiety around cancer. The Highlander recommends reading a paper by Dr Peter Harvey entitled "After the treatment finishes - what then?" which describes the feelings many cancer patients experience. Sorry I don't know how to post links otherwise I would post the link here. Maybe someone else will come forward and do so. The Headspace App has a meditation entitled Coping with cancer (one of the co founders of Headspace Andy has had cancer himself and gives advice from personal experience). I find going for a walk in the fresh air helps me too. I hope you don't mind me posting. I hope this information helps

A

Thank you, Janet, for reminding me that my treatment did work, and there is no reason for it not to help me again if the worst happens. I can't even imagine how much strength you needed to hear you have cancer - twice - and still be able to bring positivity into the conversation. And I wish you all the best for your surgery.

Marie, it really does sound like we are in the same boat. I know that there's nothing to be gained from living in fear, yet I can't help it. Pre-appointment anxiety is the worst! I was a walking crumble of anxiety and fear all through June, only to hear the CT scan was clear, and CA-125 was 6. I hope you'll get a single-digit CA-125 in a few days.

What I cannot understand is how easily I accepted the early menopause, the treatment, and it's side-effects only to end up now feeling OK physically, but in a mental mess afterward. Even when I got the referral to see a psychologist, she began the session by telling me a rather long story about how she dealt when her father passed away. Then the Covid restrictions came into place, and I never saw her again. Perhaps I should look into finding a new therapist if the costs allow.

@JaneAustinfan - thank you for your recommendations! I'll try to find the paper, and your opinion matters as much as anyones. I believe one never knows who might bring a new perspective to a situation; you certainly shed some light on mine.

Hopefully this is the link for the paper recommended by JaneAustenfan. I shall be having a read, thank you.

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Thank you all for kind words and this link. It is wonderful to speak to people who understand. I am working from home which is amazing as so much energy saved. I was struggling before. I guess iits easier to ponder on things when not meeting people and chatting though. I already feel so much better. That is before i have read this link. Thank you

Hi Mins, I know what you mean about little twinges making you worry. I started back to work at the end of May, working from home on a protracted phased return. I agreed a deal to leave at the end of September though, so I have been trying to finish up lots of loose ends and working myself quite hard burying my head into work. I've been into my office to bring things home and also to gradually clear it out. I just wanted to get everything wrapped up as fast as I could. I ended up with backache from doing more physical tidying out of rubbish, plus I was spending more time (probably hunched over) at my desk at home. Of course, all those aches in my back and twinges in my ribs morphed into "what if". But then my oncologist called last week with my latest CA125 result (normal) and I have put the worries out of my mind again. I've also slowed down with my work. 

I was diagnosed with primary peritoneal cancer in May last year and have been treated the same as patients with stage 3 ovarian cancer. My CA125 result has been normal since last September (which was after I had completed the initial 3 cycles of carboplatin/paclitaxel and had had successful debulking surgery). I completed the post-surgery chemotherapy and I am having Avastin maintenance treatment until October. I was worried about recurrence after I finished chemotherapy and that is partly what made me look at leaving work. I had been waiting 2 months for a psychological support appointment, but I never actually got it because the lockdown started. To be honest, I think I have now moved on from the place I was back then and my emotions are more in check now that I know I won't have the stress of work for much longer.

During lockdown I have watched a couple of online videos and zoom sessions from psychologists talking about coping strategies. I now understand that you can waste precious time worrying about the "what ifs" and it is better to just try to get on with living each moment well.

I check my CA125 results every couple of months and, as they have always been in the normal range since September, I'm not going to let myself worry as I generally feel pretty good.

If a recurrence happens, then I know that 2nd line chemotherapy is an option, as well as the PARP inhibitors. There are always more treatments working their way through the clinical trial pipeline. If it happens, we’ll deal with it at that point in time. 

Hi JaneAustenfan, thank you so much for sharing the name of that article from Dr Harvey. It has taken me a few days to find the right time and headspace to read right through it and this morning was the right time. It is certainly thought-provoking and very helpful. Thank you again x