Here we go again 12 May 2020
12 May 2020
It's been 25 months since I got the definitive diagnosis and staging of my ovarian cancer. I've been in pretty good shape recently. My immune system should be up-to-scratch if Cov-SARS-2 comes knocking, and in the wake of the Avastin treatment, joint aches and pains have slowly receded. I'm not as cardio fit as I was beforehand but that's laziness for you. I've continued Pilates as that really helped with the joint problems, have re-started cycling and am at the allotment most days for a few hours. And after six weeks of Covid-19 lockdown, I have more hair than is entirely comfy.
But I've just had news that the 'something or nothing' from my scan at the end of January is now two somethings. I had suspected that the news wasn't going to be great when I was asked to come to a face-to-face clinic rather than having a phone consultation. I'm writing this quite quickly - to get it straight in my head, to generate supplementary questions for firing at the clinical nurse specialist and of course, to update the interested.
The something or nothing from January was an 8 x 10 mm enlarged lymph node, although in February the doctor only referred to a 'node' and I didn't twig that it was a lymph node at the time. (BTW - I've found a Freudian keyboard slip - it's really easy to mistype lymph node as lumph node.)
Today was a registrar consulation; he said that the most recent April scan shows that the original node now measures 14 x 18mm and there's a further 9mm one too. It is just possible that they could be reacting lymph nodes full of white blood cells combatting an infection or some cancer cells. But it is much (actually much, much) more likely to be the cancer back - the Ca 125 blood marker has also risen from 8 to 22 ( still way lower than the 400 and something at diagnosis).
The multi-disciplinary team (MDT) at UCLH have discussed; the verdict is that a second surgery is the way forward ... when the lymph nodes have got bigger. At the moment they are too small to guarantee that the surgeon would find them amongst all the other gubbins. And they are too small to merit the whole-body onslaught of chemo. So there will be another scan around midsummer, another referral to the MDT and another consultation on 7 July. I think I will call this 'watching and waiting' but cue alarming visions of further lymphatic system dissemination and exponential growth. The registrar said that lymphatic dissemination is possible but it doesn't show on the scan and he used the reassuring: 'small volume disease'.
I asked to see what it looked like on the scan and, hats off to the radiologists, it looked like almost everything else, a sort of granular grey patch, but a slightly bigger sort of granular grey patch to the one on the last scan. That's if the registrar found the right granular grey patch - as he observed, he's not a radiologist.
I have all sorts of questions arising now I'm out of the consulting room. I didn't ask how many lymph nodes would be removed and I didn't ask about prognosis,
I did ask about what sort of surgery it would be. The oncology registrar also observed that he's not a surgeon, but thought it would have to be more than keyhole but less invasive than last time. Still an assault on my carefully and painfully, if not aesthetically refurbished tum.
I've had a shifty online and found some hope - this might be Isolated Lymph Node Relapse (ILNR) and I've found a couple of articles suggesting that if so, it might be less aggressive than abdominal relapse.
Covid-wise, the staff at the Macmillan Centre entrance just ask everyone how they're feeling, point pointedly at the hand sanitiser and tell you to wear a mask for the duration. It's patients only and if you don't have your own mask, they provide one of the flimsy, paper, surgical sort. After my exeriments with the basic CDC mask design, I did of course have one of my own Mark IIIs with me. Boasting a sewn-in fold and a nose dart it's a definite improvement for the smaller face than either the original or the Mark II but still a bit tough on the ears after 2 hours - there was
a long wait. Respect to those wearing masks all day, and the Covid patients on oxygen masks.
😷
It's been 25 months since I got the definitive diagnosis and staging of my ovarian cancer. I've been in pretty good shape recently. My immune system should be up-to-scratch if Cov-SARS-2 comes knocking, and in the wake of the Avastin treatment, joint aches and pains have slowly receded. I'm not as cardio fit as I was beforehand but that's laziness for you. I've continued Pilates as that really helped with the joint problems, have re-started cycling and am at the allotment most days for a few hours. And after six weeks of Covid-19 lockdown, I have more hair than is entirely comfy.
But I've just had news that the 'something or nothing' from my scan at the end of January is now two somethings. I had suspected that the news wasn't going to be great when I was asked to come to a face-to-face clinic rather than having a phone consultation. I'm writing this quite quickly - to get it straight in my head, to generate supplementary questions for firing at the clinical nurse specialist and of course, to update the interested.
The something or nothing from January was an 8 x 10 mm enlarged lymph node, although in February the doctor only referred to a 'node' and I didn't twig that it was a lymph node at the time. (BTW - I've found a Freudian keyboard slip - it's really easy to mistype lymph node as lumph node.)
Today was a registrar consulation; he said that the most recent April scan shows that the original node now measures 14 x 18mm and there's a further 9mm one too. It is just possible that they could be reacting lymph nodes full of white blood cells combatting an infection or some cancer cells. But it is much (actually much, much) more likely to be the cancer back - the Ca 125 blood marker has also risen from 8 to 22 ( still way lower than the 400 and something at diagnosis).
The multi-disciplinary team (MDT) at UCLH have discussed; the verdict is that a second surgery is the way forward ... when the lymph nodes have got bigger. At the moment they are too small to guarantee that the surgeon would find them amongst all the other gubbins. And they are too small to merit the whole-body onslaught of chemo. So there will be another scan around midsummer, another referral to the MDT and another consultation on 7 July. I think I will call this 'watching and waiting' but cue alarming visions of further lymphatic system dissemination and exponential growth. The registrar said that lymphatic dissemination is possible but it doesn't show on the scan and he used the reassuring: 'small volume disease'.
I asked to see what it looked like on the scan and, hats off to the radiologists, it looked like almost everything else, a sort of granular grey patch, but a slightly bigger sort of granular grey patch to the one on the last scan. That's if the registrar found the right granular grey patch - as he observed, he's not a radiologist.
I have all sorts of questions arising now I'm out of the consulting room. I didn't ask how many lymph nodes would be removed and I didn't ask about prognosis,
I did ask about what sort of surgery it would be. The oncology registrar also observed that he's not a surgeon, but thought it would have to be more than keyhole but less invasive than last time. Still an assault on my carefully and painfully, if not aesthetically refurbished tum.
I've had a shifty online and found some hope - this might be Isolated Lymph Node Relapse (ILNR) and I've found a couple of articles suggesting that if so, it might be less aggressive than abdominal relapse.
Covid-wise, the staff at the Macmillan Centre entrance just ask everyone how they're feeling, point pointedly at the hand sanitiser and tell you to wear a mask for the duration. It's patients only and if you don't have your own mask, they provide one of the flimsy, paper, surgical sort. After my exeriments with the basic CDC mask design, I did of course have one of my own Mark IIIs with me. Boasting a sewn-in fold and a nose dart it's a definite improvement for the smaller face than either the original or the Mark II but still a bit tough on the ears after 2 hours - there was
😷
Well done Jan, for capturing what's going on, here in your blog.
ReplyDeleteBecause you mention another assault on your beautiful tum, I guess the affected lymph nodes are the ones in your abdomen (inguinal?). Keep your pecker up. Keep cycling. Love your spotty mask. Of course you modified the CDC template! Clever socks x