Symptoms

[CookieCake]

I’m new here and would really welcome some advice and support. I was diagnosed with stage 4 a year ago, I’ve had chemo, surgery and chemo and now have had 10 of 18 doses of chemo. My biggest fear as I’m sure it is with everyone is the cancer coming back. Without realising it I had every classic symptom prior to diagnosis. I’ve been told that the symptoms are the same if it does recur, even though I’ve had surgery to remove everything. Can anyone please offer me any personal experience.

[Katmal-UK]

Hi Welcome to the site. Sorry you find yourself having to be here. I have had 2no recurrences but to be honest have never even had one symptom, not even at diagnosis. I am stage 3. There is no 'guarantee' your cancer will come back. Do you know what your CA125 is ? Have you had any recent scans? Sending you a big hug. Kathy xx

[CookieCake in reply to Katmal-UK]

Thank you so much for your reply. My initial CA125 was over a thousand but most recent was 7, I’ve had tummy pains and had an ultrasound which showed a lot of scar tissue but also a cyst. Drs are sure only a cyst but I’m constantly worrying.

[Katmal-UK in reply to CookieCake]

Wow 7 is really good. To be totally honest I think those in our situation constantly worry, how can we not. I know I do. I can have a scan one day, given the results of all ok a week later, then the next day have a pain and almost convince myself that the cancer growing at a rapid rate! I found as time goes on it does get a little easier. I keep trying to tell myself and others not to worry, worrying changes nothing and will spoil the present. Take care. Kathy xx

[CookieCake in reply to Katmal-UK]

Everyone’s experiences are different but equally it is so reassuring that the kindness offered by people like yourself make all the difference. For you to express that you have the same feelings means a lot to me, I’m in a constant state of worry but do know that I have to learn to deal with it. I’m hoping that as time goes by it does get easier. Thank you x

[Lind58]

You have come a long way, stay positive it will not return! Wishing you only the best.

[Superkim]

Hi Cookie,

I have had several recurrences over the last 11 years. For me, my symptoms are very specific and I can usually tell when something is up. However, the women on here can tell you that's everyone has their own experience. Ovarian cancer has some very general symptoms that span across many conditions.

If you're already in the middle of a chemo regimen (10 of 18?), your doctor should be aware of your numbers and your concerns.

The bottom line is that there is no benefit to worrying about whether the cancer is going to come back. Hang in there, pay attention to your body, have honest conversations with your oncologist, and know that you are among friends.

Hugs,

Superkim

[CookieCake]

SuperKim, thank you so much for your advice, it all makes so much sense, I’m just having trouble with the worrying! It is so reassuring for me to know that so many ladies who get it once get it again and again but still fight back every time. There seems such a fine balance with being positive and being realistic but I feel so motivated by so much positivity. I can’t express how grateful I am x

[Shorty864 in reply to CookieCake]

CookieCake, i started the whole story back in 2013 - stage 4 (4 years of peace). Started up again in 2018 (had another 6 sessions of chemo followed by Niraparib for 9 months) and now yesterday i started my my third lot of chemo - it is a like a chronic disease - you kind of learn to live with it and i have learn so much from this illness - how to get the most out of your day, how important your family is, how my mother has driven me mad all my life, but how important it is to forgive her - and endless other things i feel i would not have arrived at fully. All the best to you my dear. Anne

[shortfriends in reply to Shorty864]

Wonderful reply! You are always so positive and up beat despite some of the situations you have been in! You are one of the ones that has kept me hopeful especially as I suffer a lot of the time with anxiety. Thank you for all your support and wisdom. With love and hugs Pat xxx

[Lyndy]

Hello CookieCake

I wish I could answer your question! I was dx in 2015 stage 4 and had the same treatment as you. Last year my blood numbers began to rise and scan showed 3 lymph nodes swelling (well possibly). More than a year later I still have no symptoms and no treatment!

Of course I have had occasional pain-felt tired etc etc and every time I think ‘this is it’ but so far I have been lucky. My advice is to get busy with something you enjoy and try to put recurrence to the back of your mind. If it does come it will make itself known soon enough- so why waste your time waiting for it? xx

[CookieCake]

Thank you so much for your reply, you really have made me feel better x

[chasse10]

Stage 3C I ended treatment last July...all clear. 7 months later in Feb I had a recurrence. I had no real symptoms but CA125 went up to 345 so we knew something was up. I, too, find encouragement from people here who have numerous recurrences and find strength to begin again. Worry is normal for us but like others have said, keep busy, do what you love and enjoy each day as best you can.

[Trathi]

Hi Cookie Cake, welcome to the site and sorry you are worried about your cancer coming back.. I was in remission a year when my cancercame back. The symptoms I had were bloating, feeling full all the time, and pain just below my ribs on the left side.the cancer came back in my spleen. I guess deep down I knew something was not right.

I am unsure if everyone gets signs and symptoms but what I would say is listen to your body if something doesn’t feel right go get seen. I went to my GP but also phoned the specialist nurse who was the one who followed it up in the end. If it comes back there is nothing you can do to stop it, so don’t waste your time worrying, enjoy life.

Sending you lots of love 💕 hugs 🤗 and positive thoughts.

[jenny8c]

Hi Cookie Cake, Yes we all fear it coming back. I was diagnosed stage 3c/4 in July 2017, was given the all clear after my op in April 2018 and it was back in August. I worried that I wouldn't know if it was back as I had no symptoms the first time until my abdomen swelled until I looked 5 months pregnant. However I need not have worried as I did know it was back as I felt so unwell. I am now awaiting my last round of the latest chemo but the sun is shining and I have played golf again for the first time in 8 months and I feel 'normal' which is a wonderful feeling.

As the other ladies have said, try not to worry and get on with living. (I know, easier said than done). Worry will not change anything and we must enjoy ourselves the best we can as every day is precious - even if we have thousands of them to go. Good luck and keep us informed of your progress. xxxxx

[SuziTench1]

Hiya Cookie .. hey .. live for everyday 😁😁. Ive had 2 recurrences and due for another as Ca125 have gone up.. but I just try not to let it rule my life.. hard I know .. plan to do things with those you like to be around.. even on treatment I plan things around it .. treatment days go for a

Meal on way home before side effects kick in . Nice little pub by a river etc .. rest for a couple of days, as you will see from my profile im busy a the time. I've got cancer .. cancer hasnt got me !!!!. Negativity wasted energy . Live while we can .. go girl you can do it .. 🏋️‍♀️🏋️‍♀️🏋️‍♀️🏋️‍♀️. Xx

[CookieCake]

Thank you for such positive responses, I’m feeling so much more positive, if it does come back I’ll take all your advice and tackle it in the best way to beat it x it definitely seems to be about the right mindset x thank you for your kindness x

[Maxjor]

Hi Cookiecake and sorry you're here but glad you're here. I was diagnosed Stage IV in June of 2016 with ca125 at 3600 when I started chemo (I did as you did--chemo/surgery/chemo) and then went on to worry a lot. I did relapse and my only symptom (if you call it that) was a rapidly rising ca125. Nothing else. After that treatment I decided to get on with my life without worry--as much as possible--and worked at compartmentalizing the worry, fear, unknown by allowing myself about 10 to 15 minutes a night to worry and think about it all I wanted but then to stop and not allow it to invade my thoughts. To think about all the good I have in my life and enjoying it. It works most of the time (between test and results of said test it's still pretty hard for me) but I can't say I am not enjoying myself or living a pretty normal life most of the time. The therapist I got to help with this asked me how much better do I enjoy my day worrying than not worrying and what does worrying change. It helped me get some perspective. I hope you can get to a place of giving yourself that mental break you need! All the best oxoxox Judy

[TudorPurr68]

Hello and welcome. It's normal to fear it coming back, the least twinge or feeling of unwell and I panic. I know I'm to expect this so I know how hard it is. Sending you love and hugs. Keep strong Xx

[Mptelesca]

Sounds like you have already responded to treatment which is a great sign. CA125 of 7 is GREAT. Takes a while for the average person to recover from such invasive surgery and then Chemo on top of that. Your body is healing and recovering. I had my surgery 4 yrs ago and then chemo after that. I remember getting upset about how long it was taking me to feel human again. You are in great hands and now is the time we are offered so many treatment options. Little by little, as you get back to your life....these fears will fade and become bearable. Just hang in there and believe you are already better and have a leg up on this cruel disease. Sending you positive energy and hugs.

XOX

Marisa

[MarieRB]

Hello CookieCake - you've arrived at a good place in this site where there are many experiences to be shared! I was diagnosed in 2010 and had surgery, chemo, followed by Avastin. Then clear until recurrence end 2017 and more chemo in 2018; currently having a course of radio-therapy to reduce a mass in the pelvis which is impacting the veins in my right leg. So what I would say to you at this stage of your treatment is, do be kind to yourself! You've had major surgery - that in itself takes considerable time to recover from - I've been told that for each hour one is under anaesthetic, it takes a month to recover fully, and that's just from the anaesthetic ! Add to that the healing of the body, and then the extra whammy of chemo, it's no wonder our bodies constantly complain because they're not being given a clear space to recover from one thing before there's another! And of course every twinge, pain, ache, etc we swiftly panic and define as recurrence when in fact the body is just moaning quietly and effectively saying 'It's not fair'! And of course it isn't! In addition I think the healing processes take much longer the older one is - I'm in my 70's now, and need lots of nap time! I think your goal at the moment is to progress steadily through your chemo course, and try to park all the fear on the back burner (not easy). This means trusting in the fact that twinges and aches and pains are in the first instance caused by the body trying to recover, and in the second instance by reactions to chemo. If you can plan a little (or big!) reward for yourself when your chemo is finished, then do! Every blessing, Marie

[CookieCake]

Hi, totally overwhelmed by everyone’s responses, such kindness, positivity and good advice, it really has made such a difference to how I feel x I’ve just realised in my initial post I put that I have had 10 of 18 doses of chemo but meant to put Avastin, apologies x