Getting scan results can be awkward even if you have everything worked out in your head that what ever is said is positive because you will be moving forward. I find it’s awkward if you are given a curve ball though as it’s difficult to listen, when you are trying to compare expectations you have to what is being said. my last scan results were stable, and the last time they were stable in 2016 it was immediately followed by the next scan results being a progression. I also had in my head that the drug I’m on Pembrolizumab is licensed until progression so I knew a progression could mean a drug change and that one of the consultants had already reminded me that I have options, I haven’t had Ipilumamab yet and as a BRAF +ve person I can go back on to Dabrafenib and add to that the Trametinib drug. If still stable well that’s not as good as a response, or being clear but it’s still positive as some people have remained stable for some time, years even. I have been very good the 3 months since the last scan, I get tired for a few days after Pembrolizumab so that I have to pace myself and not do as much walking or walking Netball. We have had Xmas and I seem to be putting on about 0.1 of a kilogram every 3 weeks probably because I eat the same but every third week I’m not as active. Over the Xmas period I have also broken my no cakes, sweets or pudding rule and had the occasional bit to join in. The weather being cold has also been an excuse to not walk out so much, I have the Macmillan DVD for exercises at home but I haven’t touched it.
I went to a WI meeting with a friend about mindfulness but as it was on a day that I had been to the hospital earlier and I was awaiting my scan and thinking about it it was not as successful as it could have been. I’m not very good at relaxing, I get the keep in the moment bit but it easier for me to do that if I’m busy rather than just sitting and breathing. It’s a skill to master and some more easily than others. Anyway scan results.
My husband and I had been waiting in the reception area patiently, I am not sure if he had fallen asleep, but I was going through my book of code words when we were called forward to see the consultant. Ushered into her office for the results and as the consultant was no where to be seen except for her empty jacket, we were told she wouldn’t be long. I theorises that as a consultant she might have gone to help one of her juniors out with a decision, or perhaps like an earlier scan result perhaps they weren’t ready and she was having to chase them up. I later thought of a third reason that perhaps she was consulting with the other consultant about what the next preferred action might be. The scan results were introduced as not terrible, there is one rogue lymph node that is misbehaving and has grown back to the size it was before we restarted Pembrolizumab after my year of treatment being all clear. The other nodes that had increased in that time were not an issue and there was no progression anywhere else. Local action was going to be considered possibly surgery if that’s possible, possibly stereotactic radiotherapy. The later would mean a referral to a London hospital and as they don’t do it here she couldn’t give me any information about it other than to say a nurse will call on Monday afternoon to tell me what was discussed as the best way forward at the MDT. Bloods had not come back but subject to them being ok Pembrolizumab would go ahead as normal on Friday, so quick recheck even though node had grown Pembro was to continue as it’s holding everything else back but that the node that isn’t responding could be dealt with possibly by surgery or radiotherapy and the RT can have a positive effect on the Immunotherapy drug as it can make it work harder.
I must admit my head was a bit down on Wednesday evening I didn’t really fancy surgery, it had been ruled out back in 2015 as I had an unknown primary and there were too many affected lymph nodes, and in April 2018 it was raised as an option, and then as 3 nodes were affected by the time the biopsy results came through it was dropped in favour of going back onto Pembro as Pembro works everywhere. So I have never had surgery for melanoma, although I have about 20 years earlier had keyhole surgery on my knee. My only concern is how long I might be off my feet or not as actively walking, recovering or what about swelling to my limb, exercise helps my weight, blood sugar levels and more importantly my social life with walking netball and my coping mechanism for any stress. Radio therapy well I couldn’t go much down the route of what impact that might have as I thought it best to cross that bridge later.
Monday came and went, I went to walking Netball and in the afternoon waited patiently for the phone call, do I chase it up in case the consultant forgot to tell the nurses to call me or do I leave it as they need to prioritise their calls in order of urgency. So 4:30 I chased it up but just got an answer phone saying I would get a call back within one working day. Tuesday I work out that any call is likely to be after 10am, and at 10:05 I get a call not from my SCNS but from a Plastics nurse booking me in for an appointment in 8 days time in Newmarket, as that’s the only place that particular dr does his consultations. She apologised as she realised that this was even further away from Cambridge for me, so I guess it’s surgery then. I then spoke to my SCNS who said they had been quick off the mark, explained that surgery if possible was the preferred option, that the surgeon will have seen the scans at the MDT meeting and so I wouldn’t need to think about that option or she could ask the consultant if I wanted to look into that as a preferred option. I said I didn’t, thinking that might delay things, I just hope the surgeon doesn’t see me and then decide that the node is too deep down in my groin and to near to a ligament to risk surgery, or if it is to risky that he will say so and not put my recovery at risk. See I’m over thinking things again. Emma said she could be there to talk to me after the appointment, until she realised it was to be in Newmarket.
The next day I get another phone call Wednesday’s Newmarket appointment has now been altered to a Monday one in Cambridge so that’s not as far to travel and not as long to wait. My thoughts are after the node has gone although I will still be on Pembro for a while longer I will be clear again and that is a real boost, I will be incurable but clear again.
