I had my scan results this afternoon. I’ve been in 1st remission for 3 years. My CA125 has suddenly gone to 41 so had my scan yesterday.
The upshot is that it looks like I possibly have a distant recurrence in my left supraclavicular lymph node. It’s not certain until I have a biopsy early next week.
My usually negative Oncology Surgeon said that if it is cancer he’s very confident of chemo pushing me back into remission. My Peritoneal was clear.
I just wonder if anyone else has recurred there, it’s more unusual apparently
I have often read your posts as I am so interested that you have followed the Oncology Care protocol. I am so sorry to hear you have the worry of being investigated for a suspicious node. I have never heard of such a distant recurrence. I note you are Brca 2 positive. I would have thought you are very careful to have regular breast checks. I have gone 2 breast tumours to one ovarian as a brca 1. I do hope it is just a blip and not a recurrence. However it is encouraging that your oncologist is confident of a good outcome. I wish you all the best.
I was first treated in Bristol 25 years ago and am still going. fingers crossed, Zsu
I have had a lovely 3 year remission, busy having marvellous holidays and gorgeous grandbabies, I will be sorry for it to end but I know I’ve been lucky.
The interesting thing about the Care Oncology Clinic is that I lapsed the protocol about 6 months ago, it therefore does make me wonder if it was working. I will be getting straight back on it after this for sure.
Yes I get yearly mammograms and this CT noted breasts clear. It’s a double edged sword being Brca because it makes us more responsive to treatment and parps but passing it onto my daughter has been terrible.
Did you say that you’ve had breast and ovarian? I hope you are keeping well ?
I can understand your distress about your daughter but you couldn’t have known. I suppose you have to believe that it is good that at least your daughter knows. I never knew and ended up with 3 primary cancers. First one at 39 when my children were little. But I am keeping well thank you.
I have not been offered parps because my ovarian cancer was discovered at prophylactic surgery and was only 1c. They do not consider the other 2 breast cancers, even though the last one was triple negative.
I am doing aspirin/isabondronate only as ongoing preventative medicine and have often thought I would like to do COC protocol. Is one of their drugs metformin? Have you ever thought about buying it online.?
Hello... yes one of my lymph nodes is in my neck (I think it is supra clavicle) this is what first showed up on the scan but has never done anything more... so not a recurrence. Hopefully it isn’t in your case either xx
Hello, yes I have had a left supraclavicular node also. It always disappears (or shrinks beyond that which is measured on a scan) halfway through treatment, weekly taxol, cisplatin and gem and most recently Caelyx. Having said that, it obviously comes back again but I have a number of other lymph nodes which never completely disappear.
Good luck with the biopsy and at least it's in a position which is easy for your team to get to, not near any major organs, etc.
Hello, yes I too also have a left supraclavicular node. I found it myself back in 2017. I had it biopsied and it was confirmed to be a recurrence of my ovarian cancer. I had 6 rounds of carbo gem. The lymph node did disappear but I did have areas of cancer left after treatment at the base of my spine and on my liver. My ca 125 did drop to normal range but it has gone up slowly at each of my appointments since. The lymph node in my neck has also reappeared.
My ca 125 was currently at 151 this week. My oncologist has scheduled a scan for me and I was told if I’m to go back on treatment they will try carbo caylex this time round.
Good luck with your biopsy. And remember our lymph nodes can become swollen due to infection also.
Thanks for the reply, it certainly is a rollercoaster this oc lark isn’t it? I do hope that you get good results this time around again and can have a nice break from treatment afterwards
I was diagnosed with low grade serous Ov Ca thirteen years ago. Had Carbo and Taxol. Had my first recurrence when I felt a lump in in my supra-clavicular lymph node. Unable to biopsy despite trying to as too dangerous with blood vessels involved. I was pretty upset that Onco said no Chemo but, all these years later, we wonder now whether he was right, after all.
Love, Solange 😊
Hi Solange
That’s very interesting, so it’s just stayed there doing nothing? X
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CA125 rise but clear PET/CT scan
Recurrence in neck/shoulder...... anyone?
Elevated CA125 from 11 8 months ago to 93.
Lymph nodes 
