It's difficult knowing so much about Ovarian Cancer because,always at the back of your mind is the thought that when it returns you will know.
Unfortunately ,knowing and proving can often be a battle.My ct scans were coming back clear,yet my CA125 was rising and I was having similar symptoms to pre diagnosis.Change in bowel habit and pain in my left side and back.
I had a PET scan instead of another ct scan and it was confirmed that a tumour had returned on my left ovary 1.2cm .
I'm now awaiting surgery and I'm happy about that as at the start of diagnosis I was told I was inoperable and incurable advanced stage four with malignant ascities.That was in 2014.There is much debate regarding optimal de bulking (hate that word) ,it is usually the primary treatment with chemo to follow.Im now 4 yrs diagnosed and having my 1st surgery.The one worrying thing that is making me a little nervous is,at present the cancer returned to organs I can do without,easily removed .When these organs are removed it also removes the easy target for cancer cells and I'm a little worried about having organs I actually need ,being invaded by the buggers.Has anyone had their 1st surgery years in tom their diagnosis?
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annieH1
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I had my third surgery about 3 years and 3 months after diagnosis for a pelvic tumour. It did come back two years later. However I believe in surgery as a great tool to fight the onslaught. OC doesn’t randomly cling on its swim by there has to be susceptibility already there so try not to worry about that
Hi Annie. I keep having the same strange thoughts. It seems useful to have a couple of organs you can do without.. for the tumours to latch on to. And where will they turn when these organs are gone? Well... Luckily, even after debulking surgery there are plenty of manageable 'opportunities' for the tumours... if they return at all.
I did have debulking surgery up front and lost 7 organs to it, if they can be counted like that (omentum, ovaries, fallopian tubes, cervix, uterus, gall bladder, appendix). My OC returned in a few pelvic lymph nodes. Yes, I have to watch out for lymphodema now and wear compression stockings when going out.. but that's still agreeable, in a way.
Having radical surgery (where possible) definitely brings greater benefits than intentionally leaving a few 'honey pots' for the tumours, so I'm glad you've been given the chance to have it after all.
Hi Annie sorry to hear this is happening to you, I was diagnosed stage 4 ppc with plural effusion last November I was told I was not suitable for surgery as it would not benefit me both before and after chemotherapy with avastin treatment I am on avastin only now, however I went to the Hermitage clinic as I have a persistent nodule adjacent to my decending colon and they discussed me at the MDT and said I am suitable for cyberknife, The consultant met with me and said its best to stay off avastin for a month and for now as its working i am staying on it but if anything changes I will be going to Dublin this has been agreed with the consultant in the hermitage so its 5 sessions in total 2 days one week 3 days the following week, best wishes for your care plan and surgery you are so strong and inspirational I always look out for your posts as you have a similar diagnosis so please keep us updated. thanks Clare
I think the idea is to stay off Avastin because you cannot even have a biopsy or tooth extraction while on it due to bleeding. I would check this again with your Consultant. While the Avastin is working, I can understand your hesitation but so far I am doing okay after the Stereotactic Radiotherapy which is similar. I am sore of course and would be better if I went back on my painkillers, But trying to find a happy medium. I got constipated post treatment so meds made that worse so getting back to a regular loo trip and then trying meds once a day with the proper lactulose
Thanks Joan do you think I should go back to the radiologist consultant my oncologist didn't ever agree with this treatment and maybe take the break from avastin for the month its a hard one to call. I had a two month break from avastin and ca 125s jumped by 40 after one treatment it reduced by 20, The pain killers can cause awful constipation, Tramadol is terrible for it, I could not tolerate it at all but as the chemo caused me bad constipation they changed me from lactulose to movicol, I am delighted to hear this treatment was successful for you -its great to know there are options for us now.
I don't know really what to think, I would go with what the radiology consultant says because they are really highly qualified, The cybernife will be working away for some time so your 125 shouldn't go up. I don't have a scan until September to give me time to heal and so scar tissue will be evident and not a shadow. I was told that last week. Think about it seriously and you can always go back to the radiology consultant. In the end its our bodies and our lives. Would I go through the treatment again ? Yes I would. I have my tummy back in sync now with milled flaxseeds and fruit and Keifer so next time this plays up will take the Targin. I suppose the fault was mine, I did mention the pain at reviews but nothing was made about it. When it was really bad I went back to my gp who had me back to my team in days. They agreed something wasn't right and it took off from there. I did hate the thought of being away from home but glad I stayed for the last three treatments, it was a lot easier on me.
Hi Joan I got back onto the radiologist consultants secretary this week, and said I wanted to double check the suitability for it and she said that as they do little tattoo markings around the target area and that alone is a risk while on avastin, i remember on diagnosis the CNS said not to get my eyebrows micro-bladed for the same reason. I was in for avastin yesterday and my CA 125s are rising slowly from 202 to 249 so I have asked to see my ONC in 3 weeks so if they are the same I might see if the nodule may be causing it and if it would be in my interest to take a break have the cyberknife , Its a hard call to make, did you have your CA 125s checked yet since the treatment or is it too soon, how long after do they normally plan a ct. Clare
Hi Clare, I was back with my Onc last week, no bloods nor ct scan until September and then back for results. Apparently I am inflamed so wouldn't have settled yet. I am still sore, I am trying to take the Targin and using black licorice for constipation issues and that is working for me. My ca 125 was over 400 before treatment, I hadn't had it done in a year. I had pet scan to confirm it was in one area only and then the radiation was suggested by my MDT. I would consider petscan if you hadn't one already, I cant remember if you had and then make your decision. I am much brighter in myself and eating mad which is a good sign for me. I was on a stay out of jail card when I got this so hadn't Avastin issues. If your 125 is still rising then Avastin isn't working. I got tattoos its like a stamp but didn't hurt,
Hi Annie, I had the conventional treatment of chemo/surgery/chemo.
You could look at it another way....if the ovaries/fallopian tubes manufacture the rouge cells, you’ve removed the ‘factory’. Although there may be invisible cells in other areas, your own immune system &/or follow up chemo will zap them.....I don’t know if this makes sense! You are also very perceptive now as regards symptoms, so you will act if you ever notice new symptoms.
I hope this operation is really successful for you! Linda xoxo 🌼🌸🌼
Hi Annie I wish you the best with the surgery, I imagine removing what needs be is a good idea and they will keep a close eye on your post surgery. I agree with Linda, if you don't have the factory, it cannot manufacture cells. Hopefully it will be the success it is intended
Thanks ladies for your lovely replies.when I look back on diagnosis four yrs ago so much has happened since in the world of science to help us lead a longer life.Olaparib,nimparib,cyberknife,targeted rt like Suzuki had,the future is brighter for many women now.I guess it's something to take away the manufacturer of the O.C and probably down the Rd another start up company will take over the manufacture of these little buggers but,I'll be ready and science will rule !! 😀💕😉💊
You will get there, don't worry, it is daunting going into surgery after all this time but you are a strong lady and will come out the other end of it smiling. It will take a while to recover but its not impossible. Buy yourself some nice face moisturiser and hand cream, I used lavender thinking it would calm me down.
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