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I’ve been meaning to do an update for a few weeks now while it was still November. My scan was set for 6/11 and in October I felt a lump come up in my groin, I was sure it was a lymph node near to the one that was removed in my groin in March. I pointed it out a week later at my oncology appointment and as my scan was 2 weeks later and nodes can go up and down I just went with the flow of waiting for the scan. I did some walking two days running of about 11k steps and the next day I woke up with a throbbing and needed pain killers every 4hours, my lump felt 5cms and any walking or shifting seemed to annoy it. So the next few days were spent resting and I alerted my nurse about the change, she kindly did some enquires and arranged for me to be seen a week after my scan to get my results instead of waiting until 4/12 which had been the original plan. I expected at least one node to show on the scan as the lump brought back memories of July 2015 when I had a big lump but a scan showed many enlarged lymph nodes. I was relieved to hear it was just one which was 17mm no where near the 50 I could feel.
I had been looking forward forward to March when I would still be clear and would come off Pembro, I felt a bit like I was in Groundhog Day, one rogue node misbehaving, talking about surgery again, not changing drugs as they felt Pembro could still be keeping things back elsewhere and wanted to keep other drugs in reserve and do surgery if possible. The MDT had not discussed me yet and that would happen on Monday and I’d get a call. No biopsy mentioned just straight to surgery, Last time I had a node come up I insisted on a biopsy, as a scan can tell you it’s an enlarged node but not why it’s enlarged, but this time I thought go along with what they say as I could feel it.
Mondays call confirmed surgery possible but needle biopsy required, and surgeon wants to take the string of nodes out not just one to prevent another local node coming up again. Biopsy planned for 6/12 and about 2 weeks for results, but told they would be very surprised if not melanoma in my lymph node again. My Pembro was due the same day so they have moved it to the 9th and will give me a double dose so I won’t need to come in Christmas week, my next dose will be mid January.
My mind has been working out results not due to 20/12 and then appointments with surgeon and pre opp, making surgery not likely until mid January. Last time it was a January scan that prompted surgery early March so I’ve waited that long before. I’ve also had the thoughts of changing drugs is quicker but side effects and leaving treatment in reserve for when surgery not possible. I haven’t voiced these thoughts except to my husband as it’s just what I reconciled to in March. I am however lamenting removal of lots of nodes, it’s what the surgeon was talking about last, when oncology seemed to say only one necessary, and I was concerned about mobility and possible lymphoedema. So here we are again, it’s not proven that removing the nodes will help longevity but they think when recurrence is local that it can be a good move. I’m not in a mood to question things, just not wanting it done, but also wanting it done if you can understand that. The 50mm lump has reduced and so is this all just a quirk of fate.
So less than a week til the biopsy now, and I have a cold which I hope will clear up quickly. I have been fed up that I’m still on treatment, and relieved that I’m still on treatment all in the same 3 months. I’ve been thinking ahead to keeping clear and having a normal life span, and reminding myself of the incurable diagnosis I had in 2015. I’m still here and not as unwell as I was back in 2015. My last Aunt has just passed away and her funeral is on Friday the day of my biopsy. I have a winter lights event to look forward to and a Walking Netball Group Christmas meal, and my daughter coming for a week at Christmas so thoughts of any surgery can just wait.
I’ve stumbled across this doing a “Pembro” search, which I do once in a blue moon.
I’m not sure I’ve entirely followed all this, but SHIT. I can imagine that ‘oh god, got to get through it again’ feeling. It sounds like you are able to ‘park’ the worry until you know more, which is great. Enjoy Christmas with the family.
Don’t hide away though if you need us. Xxx
Hi Kate I hope your Pembro is going well. I would be interested to hear more about your lymph node dissection.
Hiya - sorry for the delay, I didn’t get a notification and only just checked back!
Pembro is going absolutely fine for me so far - touching wood - I’m on Cycle 7 tomorrow (6-weekly double doses now).
I wrote a blog through the whole surgery experience if you want a real insight. It was 7 months ago now, and I can’t quite believe it’s been and done with so soon. I’m seriously impressed with how well my wound has healed to be honest!
It was pretty rubbish at times, but I’m back to normal worrying about work now, and honestly looking forward to a full day of treatment and scans at the hospital tomorrow just to get a break!
Hope you’re doing okay. Xx
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