I'm new to the grouip. i was diagnosed in Sept 18 with grade 3C serous OC. Following my diagnosis I had three months of chemo - taxol/Carbo and then in January 2019 had radical debuling surgery, total hysterectomy, spleen and omentum and lymph nodes removed, Gall Bladder removed, and part of lower bowel removed snd have a stoma. After my surgery had s further 3 months of chemo and had scnned and I am now in remission. I went for a further scan a fee weeks ago as had low back ache, but no thats resolved, but the scan has shown that some of the lymph nodes are slightly larger than the previous scan last year and they are not sure whether or not the cancer is back. I also have a small hernia around the stoma. They had the MDP meeting last week to decide what the course of actio is (if any) and I have an appointment this Friday with oncologist to advise me what they have decided. My last CA125 was 3, but it was never in the thousands when I was diagnosed at staGE 3 - it was 250. I am slighty concerned even though I know there is no point unless they know for sure that the beast has returned - any thoughfs anyone?
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win_56
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Hi Welcome to the forum, sorry you have a diagnosis of OC. I was diagnosed with Stage 3 OC in October 2007 and despite 2 recurrences, am still here albeit on my third trial drug. I have been NED (no evidence of disease) since August 2013 and currently have a CA125 of below 3. The fact that your CA125 is at 3 the last time it was checked is good. Mine, like yours has never been high, in fact it was only 65 at last recurrence so for me it's a good indicator. Hopefully the oncologist will have good news for you on Friday. Following such a diagnosis we are naturally concerned at anything out of the ordinary. I was told that about 2 years ago there was a 'spot' on my spleen that had been picked up on the CT Scan...... which had probably been there since birth! Please let us know how you get on. Sending you a virtual hug. Kathy xx
Hi Kathy - thank you so much for your reply - it's fantastic news that you have been NED since Aug 2013 and long may it continue!! Just reading your post fills me confifence and hope for the future. Just want to get Friday out of the way and hopefully all will be ok. I try to stay positive as much as I can but the recurrence rate is so high for stage 3 and it's always there lurking in the background. I had my CA125 marker done last week, so fingers crossed its remained low. May I ask are you on any Parb inhibitors?
I was diagnosed with 3C serous OC in May 2019. Had radical debulking in June: removal of main mass of ovaries (I already had a subtotal hysterectomy 5 years previous), removal of omentum, peritoneum, appendix, removal of sigmoid section of bowel (I too have a stoma), removal of part of vaginal vault, removal of lining of bladder and small part of bladder (bladder reconstruction), disease scraped off my spleen, stomach, liver, followed by 6 rounds of chemo. I had 3 lymph nodes removed, one in the fatty tissue of my bowel tested positive, the para aorta lymph nodes removed tested negative. Unfortunately CT scan after surgery showed that I still have residual disease on my liver, though chemo did shrink it to half the size. I am receiving Avastin every 3 weeks and will continue to do so until September, hopefully this will keep the small nodule on my liver, at bay.
I also have a hernia. My stoma nurse ordered me 2 pairs of support boxers and 2 support waistbands from Fittleworth... the brand that Fittleworth are supplied with are comfizz. You can also find the Comfizz garments on Amazon. But you should be able to get your stoma nurse to order some on prescription. I also had a nurse from a company called Suportx visit me to measure me for a support belt, again this will be ordered on prescription.
I initially wore the comfizz level 2 support boxers, but the firmness of the support was a bit too tight/firm over my stoma and on a couple of occasions caused ‘pancaking’ which caused leaking between the flange (the seal of the stoma bag) and my skin. So I opted for level 1 support and this allows the stoma to work better, although maybe slightly less support for the hernia.
My stoma nurse advised me that drs will not generally operate on hernias unless they become problematic i.e. strangulation, blockage etc. I’m hoping to get to NED at some point. If I do then I have been told my stoma can be reversed at that point, and presumably the hernia will be dealt with at that point too. Have you been told yours can be reversed too? Until then I’m just having to be careful not to make the Hernia any worse and always wear support garments. But I’m managing it!
I have swollen lymph nodes all my tests and ca125 has been a 7. My CA also was never in the thousands. I've been cancer free coming up 6 years. When a lot of lymph nodes get removed they took 15 from me found cancer cells in 2. The lymphatic system gets pissed. I developed whats called a lymphocele, it's a cyst that fills up with lymphatic fluid. I had to have it drained every 3 months for 5 years. It finally is now small and I don't have to have it drained anymore. It took a long time to feel not tired and some days I rest more. But I'm cancer free 6 yrs April. It sounds like they removed a lot which does stress your body. They removed a 2lb tumor all female junk, my appendix, omentum, 15 lymph nodes and scraped my colon. My body was stress city. I hope this info relaxes you a bit. Best wishes, Liz
I had 5 hernias which are common after major surgeries of the abdomen area. Mine were repaired about a yr half later do to pain. It's also common to get a blockage later. I had stomach wash chemo also called intraperitenil chemotherapy. 18 rounds in 14 weeks. Best wishes
Hi, Like you, diagnosed 3C - surgery, treatments, etc. In remission for a long while and then had it reappear in the lymph. Treated with a few doses of targeted radiation as there were but two and thus far and doing fine. Chemo is an option as well, but the long term dosing and recovery (for me) was more of a burden than the few quick shots of radiation. Your oncologist will provide you with the best possible recommendation based on your unique circumstances, the size of the lymph growth and location. If it is in the lymph however you will likely want to treat as soon as recommended to avoid further spread.
In the meantime, stay on top of it (might have to wait a few months for another scan), try not to worry (I laugh as I write that - it's what everyone tells us and yet that's what we do nearly every day) and take good care of yourself. Best wishes for good news in your future.
Thank you so much for your reply . It's always uplifting to hear good news that others have got through this and had good results. Just dread the thought of another surgery and more chemo but it is what it is and as you say just want to get on with it and get the treatment done asap. Thanks, June.
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