What the registrar said 7 July 2020
I saw the same gynae oncology registrar as last time and felt less awkward this time. He did very well with having not great news to impart. Mask stays on.
Ca 125 was up to 72. That's 8 to 22 in 3 months, 22 - 72 in a month. That told me to expect worse. Mask stays on. Professional, interested mask goes on.
Things have progressed, in a bad way.
The two lymph nodes from last time have grown from 13 x 17 mm to 16 x 21 mm(near aorta in abdomen), and 9 - 15mm (near where the aorta splits in the abdomen).
Two more have become of note - one from 6 - 10mm (near rectum) and one from 4 - 9 mm (crucially, this is in my chest, above the diaphragm, near the lower lobe of my right lung). These are all lymph nodes, but there is still worse news.
There is a 4cm pelvic mass near some post-surgical thickening. I recall someone, at some point, saying that cancer cells can hide in scar tissue... Masks stay on.
(This does explain why some of the old and troublesome loo habits have returned - really most unwelcome.)
The MDT has met, discussed and recommends a return to chemotherapy. Surgery is now not an option - lymph nodes near the aorta are not a good bet and it's now in my chest, so something more systemic is needed.
It will be the same carboplatin, but with added liposomal doxorubicin (iinstead of paclitaxel) this time. It'll be four-weekly rather than three-weekly as blood counts take longer to recover than with paclitaxel. Six cycles - six months. Possibility of maintenance treatment thereafter, maybe PARP inhibitors or a trial drug. He will go and get me some information sheets.
I interrupt him as he's getting up from his chair:
Do lymph nodes get involved sequentially? No - it jumps about, missing some.
Is there a risk of remote lymph nodes getting it, remembering that the scan is of chest and abdomen only? Yes, although brain unlikely to be affected due to the blood/brain barrier. Don't like to scan head and neck due to radiation risk and would make no change to treatment. He gets up and heads for the door.
So this isn't an Isolated Lymph Node Relapse as I had been hoping? No.
Had I cracked my ribs when I plummeted to the ground at the allotment? Nope - nothing to see there.
Trivially, I ask if I will lose my hair again. He thinks it much less likely.
I think there's more of this, but then I let him get to the door and he comes back with sheets on carboplatin and liposomal doxoribicin. When I look later, it says hair loss is likely.
The next appointment will be on 21 July. It will feature Dr Miller herself and follow baseline blood tests and a Covid Swab test. There will be a phone consultation with a pharmacist either before this or on the same day.
Two days to analyse the tests and if all is well, the first cycle of the second series of chemo will go ahead on 23 July. Masks stay on.
I make it out, make my appointment arrangements at Clinic reception and head for the Macmillan Living Room. Masks stay on.
It's almost empty, so easy to find a sofa place. I phone for my lift home.
One of the advisors comes over and I am greeted. Elastic on the professional, interested mask fails and the mask drops off. I can't talk and am crying.She tells me her name, that she is a radiographer but currently working here, goes to get me a hot water (disposable cup), then retreats until I am ready. They are really very good here. Mask comes off to drink hot water.
Once somewhat recovered, I put on my second mask (one I prepared earlier) and we talk - she gets me some information on PARP inhibitors from Cancer Research. It seems they are new enough for Macmillan not to have their own info yet, but it also seems that they are for BRCA positive women - not me. But much too early to think about this yet. We discuss how I might manage transport when no visitors are allowed and I may be too groggy to find my own way safely to where I have been meeting Christopher in the car on Gower Street. We talk a little more about Covid - I will have to ask Dr Miller about how it has actually been affecting patients on chemo.
Christopher rings to say he is at Mornington Crescent, which is my signal to leave for our meeting point. My turn to give him the not great news, and later the children.
Ca 125 was up to 72. That's 8 to 22 in 3 months, 22 - 72 in a month. That told me to expect worse. Mask stays on. Professional, interested mask goes on.
Things have progressed, in a bad way.
The two lymph nodes from last time have grown from 13 x 17 mm to 16 x 21 mm(near aorta in abdomen), and 9 - 15mm (near where the aorta splits in the abdomen).
Two more have become of note - one from 6 - 10mm (near rectum) and one from 4 - 9 mm (crucially, this is in my chest, above the diaphragm, near the lower lobe of my right lung). These are all lymph nodes, but there is still worse news.
There is a 4cm pelvic mass near some post-surgical thickening. I recall someone, at some point, saying that cancer cells can hide in scar tissue... Masks stay on.
(This does explain why some of the old and troublesome loo habits have returned - really most unwelcome.)
The MDT has met, discussed and recommends a return to chemotherapy. Surgery is now not an option - lymph nodes near the aorta are not a good bet and it's now in my chest, so something more systemic is needed.
It will be the same carboplatin, but with added liposomal doxorubicin (iinstead of paclitaxel) this time. It'll be four-weekly rather than three-weekly as blood counts take longer to recover than with paclitaxel. Six cycles - six months. Possibility of maintenance treatment thereafter, maybe PARP inhibitors or a trial drug. He will go and get me some information sheets.
I interrupt him as he's getting up from his chair:
Do lymph nodes get involved sequentially? No - it jumps about, missing some.
Is there a risk of remote lymph nodes getting it, remembering that the scan is of chest and abdomen only? Yes, although brain unlikely to be affected due to the blood/brain barrier. Don't like to scan head and neck due to radiation risk and would make no change to treatment. He gets up and heads for the door.
So this isn't an Isolated Lymph Node Relapse as I had been hoping? No.
Had I cracked my ribs when I plummeted to the ground at the allotment? Nope - nothing to see there.
Trivially, I ask if I will lose my hair again. He thinks it much less likely.
I think there's more of this, but then I let him get to the door and he comes back with sheets on carboplatin and liposomal doxoribicin. When I look later, it says hair loss is likely.
The next appointment will be on 21 July. It will feature Dr Miller herself and follow baseline blood tests and a Covid Swab test. There will be a phone consultation with a pharmacist either before this or on the same day.
Two days to analyse the tests and if all is well, the first cycle of the second series of chemo will go ahead on 23 July. Masks stay on.
I make it out, make my appointment arrangements at Clinic reception and head for the Macmillan Living Room. Masks stay on.
It's almost empty, so easy to find a sofa place. I phone for my lift home.
One of the advisors comes over and I am greeted. Elastic on the professional, interested mask fails and the mask drops off. I can't talk and am crying.She tells me her name, that she is a radiographer but currently working here, goes to get me a hot water (disposable cup), then retreats until I am ready. They are really very good here. Mask comes off to drink hot water.
Once somewhat recovered, I put on my second mask (one I prepared earlier) and we talk - she gets me some information on PARP inhibitors from Cancer Research. It seems they are new enough for Macmillan not to have their own info yet, but it also seems that they are for BRCA positive women - not me. But much too early to think about this yet. We discuss how I might manage transport when no visitors are allowed and I may be too groggy to find my own way safely to where I have been meeting Christopher in the car on Gower Street. We talk a little more about Covid - I will have to ask Dr Miller about how it has actually been affecting patients on chemo.
Christopher rings to say he is at Mornington Crescent, which is my signal to leave for our meeting point. My turn to give him the not great news, and later the children.
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