Another pleural effusion - Scared of recurrence....

[Carol63]

Scared…..

Hi, I have been so upset this week. I was diagnosed OC 3c high grade serous in October 2015, aged 63. Had 2 carbo/taxol, but because of side affects of taxol resulting in two x 2 weeks in hospital, plus really bad neuropathy, taxol was stopped. I had 2 pulmonary embolisms, pleural effusion and am on Tinzaparin. I then had 2 more carbo before surgery in March 2016. Had total hysterectomy, omentectomy, bowel resection for thickening, nodules on small bowel – illeostomy, oh and 2 nodules dissected from my diaphragm. I then had 2 more carbo. My scan on 6th June was NED and CA125 was 25.

I had been slowly recovering my energy and walking as much as I can [with the help of a stick mainly because of the neuropathy in feet], but then over the last month or so I have started to feel breathless, have back ache, pains in shoulder and arms, also stitch like pain under right rib and difficulty taking a full breath. At my first three month appointment this week, my oncologist examined me and said that there was ‘thickening’ at the bottom on my right lung. I had my bloods checked and he has ordered a CT scan.

I am terrified that it could be the cancer coming back in my lung, he said it could be a number of things, i.e. because I had the embolisms and fluid in the past, it may be that my lung is reacting to this damage, also that even on medication an embolism could recur and cause this fluid again. Is there anyone who can relate to these symptoms post treatment? If it has come back that means I only had four months remission, which by what I have been reading does not bode well for the future. If it had come back on my diaphragm or lung, I am terrified that it may not respond to treatment this time.

I have not posted before, but have been reading lots of posts and have taken encouragement from you all, which has helped me to get through all this.

Carol x

[meboo]

Mum had a clot in her lung post treatment. Apparently she thought she was having a heart attack one night, but didn't tell anyone, then had pain around the lower rib cage but didn't say. A routine scan a week later picked it up & she was put on blood thinners. I hope you have a similarly 'simple' outcome

[Carol63 in reply to meboo]

Hi, thank you for reply. I had similar type pain as your mum and thought maybe a clot had come back, but I have been on blood thinners since March. The Onc did say sometimes it can happen again even with medication, but I can't find anything researching this. I would not want another clot, but rather that than more cancer.. thank you again. I hope your mum is well.

Carol

[Hidden]

HI Carole, I have no experience of this, but I do hope your oncologist and scan will have a positive outcome. Please try not to worry and wait and see what the scan and bloods show. My neighbour who doesnt have cancer did get a second blood clot because her blood is the type which can clot easily, She is on warfarin at the moment and is doing okay.

[Carol63 in reply to Hidden]

Thank you for your reply Suzuki. Thanks for letting me know about your neighbour, maybe this is what has happened to me. I am going to try and do lots of outings in the next few weeks to distracted myself from worrying.

Carol

[Caroles1]

Hi Carol,

I too have no experience of this,but I do worry unnecessarily and I implore you not to do the same as it never helps!

The other ladies have given advice and told you what it could be so I hope you feel better for that,

Just wanted to wish you well for the results

Carole xxx

[Carol63 in reply to Caroles1]

Thank you Carole, I am trying not to worry, as you say it doesn't help.... Thank you for you well wishes xx

[LorettaMEmery]

Dear Carol.

I am on my third line chemo. I was diagnosed in May 2014 and had full hysterectomy and section of bowel removed. Chemo weekly for 18 weeks with carboplatin and taxol. I had a ileostomy which was reversed 14 months later. In January 2015 the cancer had returned so more chemo with carbo and gemcitabine. Further surgery in June this year to remove a tumour which was growing despite the chemo.

I too had pain under my ribs and a Ct scan has shown gall stones. That was a relief as we grow to expect bad news. However there was some regrowth of nodules on peritoneum. So more chemo.

CA 125 was 7000 in August. I am two cycles in. Disappointing but lungs okay.

You will get through this. It is such a worry but joining this site has made me realise we have so much to be grateful for and the site gives us such support. I felt totally isolated with this illness although surrounded with friends and family.

Good luck and hope the chest pains are not related to the cancer.

Keep well xxx

[Carol63 in reply to LorettaMEmery]

Thank you for your reply Loretta [lovely name]. It is so helpful hearing of others experiences. I hope your chemo will 'zap' the remaining nodules and that your CA will come down. I can relate to feeling isolated, it is hard to explain, as people keep saying you look so well. I don't know what I would do without my two daughters and granddaughter [who is 6 and an absolutely amazing little girl with a fantastic sense of humour], she cheers me up on her visits.

Trying to keep positive, Carol x

[LorettaMEmery in reply to Carol63]

I too have daughters. Three aged 43, 41 and 34. Also twin granddaughters aged 5. I have a little grandson Thomas who is 8 - the only boy in our family. They keep me sane. My parents are also both alive. I am so lucky to have a lovely family but still felt all alone with this awful illness. I never thought it would affect me I was so ignorant and kept accepting a diagnosis of IBS for ages. I now know IBS does not start at my age - 60 when diagnosed. I too look well and everyone tells me I do I know I'm not though - the chemo takes its toll .

I hope you will stay well. This site is a god sent to me. I spend too much time on it but I am getting so much comfort from the members who are amazing and strong

Thanks for replying.

Loretta x

[Carol63 in reply to LorettaMEmery]

It is so good to have family around to help, especially little ones. I went to GP with classic symptoms and she thought it was 'muscle strain', but I insisted on a CA test which came back at 300 - then the ball started rolling pretty quick. If I had not actually asked for the test, how long would I have been going back and forwards.....

Chemo does take its toll and for a long time, but also its toll on the mind, but we do get through and this site does help!

x

[IrishMollyO]

Hi Carol

You really have been through the wars with your experiences . You have been so brave. Of course many women have totally different stories to tell. Although I'm back in chemo for recurrence in lymph nodes , I think I got off lightly compared to others. For that reason I cannot relate to what you are going through. I can only talk about how I dealt with it emotionally.

I discovered that worrying about the future is a waste of the valuable time of the present. I accepted the offer of talking to a psychologist attached to my oncology unit. She has been invaluable in putting my head back together in the face of this disease. I practice mindfulness and that stops me from going forward but to think of the present moment only. And of course the ladies here are my lifesavers .

Wait until the experts tell you and have your questions ready. As someone who always went alone to my appointments I would now advise everyone to bring along a trusted family member or friend . I learned from experience that going it alone is not very wise..

Carol I hope you don't think I am lecturing you. I just wish you all the very best for the future . Please keep in touch and you will always get an answer on this site. Take care

XXX

[Carol63 in reply to IrishMollyO]

Thank you so much for this message Molly. I really appreciate your thoughts. I did have a few appointments with a psychologist when I was going through the chemo problems, she was very understanding and gave me ideas how to cope.

My daughter always come to my appointments, she remembers things more than me and reminds me of the positives the doctor talks about! I will update my post after I find out what is going on.

Thank you again

Carol

[IrishMollyO]

Great Carol

I'm delighted to hear that your daughter goes with you. Two heads are better than one they used to tell us at school. Will look forward to hearing from you . Best wishes and good luck.

XXX

[antheamary]

Hi i get breathless & have a pain above my ribs. It could be asthma or producing too much acid in my stomach or what else? I am up for an urgent scan as my ca125 has risen. I will wait & see what answers we all get.

[Carol63 in reply to antheamary]

Hi, I hope you find out soon what it is. I hope I get my scan soon, hate this waiting. I will update here when I have the results.

Thank you for your message Anthea x