Thyroid Update

So today was my thyroid follow up appointment. They’ve decided that they are going to operate, and it should be in a few months time. I told them about our holiday, and they said not to worry and that it wouldn’t be  before then. I asked the guy today what my biopsy results actually were, because one of the haematologists just told me it was inconclusive and was a bit fluffy with the information he gave me.

Basically it works like this:

They work on a scale on 1 – 5. 1 means that they have no idea, 2 is definitely benign, 3 is probably benign, 4 is probably malignant, and 5 is definitely malignant. I’m a 3. So there is a 70% chance that it is benign, so that has helped put my mind at rest. If it is malignant, then it will probably be treated with radio iodine (not really sure what that is, but will research it a bit more) and in the consultants words “I’m sure we can cure you.”

I was also posed with a choice. If it is malignant, they will want to remove the whole thyroid gland. However this will mean another op as they won’t know if it’s malignant or not until they have tested it. So the choice was I could opt to have the whole thyroid gland removed when they do my op, or just the half and see what happens. I was told to go away and have a think about it. My instinct (and Neil’s) is to go with just having the half of it remvoed seeing as the odds are in my favour.

I also had to have a camera up my nose to check my vocal cords. That was an interesting sensation!

I have a haematology appointment tomorrow in which I hopefully get a final answer as to when my scan will be. Watch this space…

It’s not over ’til it’s over

I am a week post-chemo. For my final one, I made some cupcakes and some brownies for the staff on the chemo unit, I was really pleased with the reaction they got! Let’s just say they went down well!

I don’t really know how I feel after finishing chemo. Don’t get me wrong, I’m so glad I’m done, but it doesn’t really feel like it’s over yet. I don’t know when or even if that will happen for me. I think once I have my scan and I’m told I’m in remission, I might feel like I can move on. When my scan will happen is a matter of debate at the moment. It seems to depend on who you talk to. I have a clinic appointment next week, so hopefully we will get a definite answer one way or the other. I just want to have my scan and get some good news before we go on holiday, so we can completely relax.

I also have another thyroid appointment on Monday where we find out what the next step is and if/when they are definitely going to operate. I think that’s another reason I can’t quite move on yet, because we don’t know what’s happening with it. Neil is coming with me t my thyroid appointment on Monday, and Nick is coming to my haematology appointment on Tuesday, so I’ve already briefed him in that we want the outcome to be a scan within the next 7 weeks!

In other news, I have been nominated for a Beacon of Hope Award in the raising awareness of lymphoma category. I totally did not expect that, nor do I feel like I have done anything to deserve it. I don’t expect to be short-listed, but even the fact that I have been nominated at all is a big deal for me.

I shall keep you posted on my appointments next week!

What Happened Today…..

Thank you all for your lovely Facebook comments about my appointment today. I thought I’d put it all in a blog post rather than try to cram it into a status.

Right, so some of you know the thyroid story, some of you don’t. So here’s a catch up.

When I had my first PET scan, before I started chemo, I had a great big mass of orange showing up on my chest/lung. We asked the consultant if it was just in the one place and she explained that my thyroid had shown a hotspot too. She decided not to do anything about it at that point because there was a chance it was also part of the Hodge.

April was my next scan, and much to everyone’s relief, the big mass of orange on my chest had gone, however, the thyroid was still orange. She then decided to send me for a ultrasound and fine needle biopsy as we were fairly sure this wasn’t Hodge related.

I had the biopsy in June, and eventually my results coame back, however, they were “inconclusive”, so was referrend to an ENT consultant.

Fast forward to today (six months to the day since my diagnosis – wow, that’s gone quick!!) and I’m seen in ENT. The long and the short of it is that they don’t know what it is. I have a lump there, but we don’t know if it’s benign or malignant, although lots of thyroid lumps are benign. However, because it was showing orange on the scan, they don’t want to leave it and therefore they will more than likely remove it. That means another general anaesthetic, another scar and another stay in hospital. They aren’t in any particular hurry (hmmm, I’ve heard that before!) and have said it can wait until I’ve had chance to recover after chemo is over. They are going to discuss it in their MDT meeting and will see me again in two weeks to decide the next step, although surgery will probably be in a few months, which will probably end up being when I go on holiday, in which case I will ask them to rearrange.

I just feel like that I should be coming to the end of something now and that I should be able to move on, but instead of being able to do that, I have to start again with something else. Surely I’ve had my fair share now, isn’t it someone else’s turn yet?