Hi,
I have Stage 4 Poorly Differentiated Thyroid Cancer. It was diagnosed after a craniectomy to remove what was thought at the time to be an atypical meningioma (benign brain tumour) that was affecting the overlying bone and my vision. Unfortunately it turned out to be a metastatic deposit of poorly differentiated follicular variant papillary thyroid carcinoma so I went on to have various scans and a total thyroidectomy followed by radioactive iodine therapy. I have now been told I have a deposit in my 3rd right rib and there may be further microtumours or low volume metastases. They are not sure if the treatment I am having at the moment, which is very easy to tolerate,(Radioactive iodine therapy) will work. Won't know this till Autumn. If it does then I will be monitored and given treatment every two years. If it doesn't I may be looking at immunotherapy, external beam radiation therapy and/or molecular therapy, which I am told is at least as horrible as chemo. Of only 3000 cases of Thyroid Cancer diagnosed in the UK every year, only 100 of us getting my particular diagnosis and the minimal amount of research into and information (even in the Lancet) about this cancer is frustrating.
Unfortunately, my cancer is so rare and my presentation so peculiar, I am struggling, even in the British Thyroid Foundation or Butterfly Thyroid Association, to find anyone who has had any similar experiences. There are so many aspects to this - surviving 9 days on ITU, as the result of post-brain surgery complications (bleed and clot as well as ventilator -related pneumonia); ; living with a hole the size of my hand in my skull with little prospect of a plate being refitted; metastasis to the bone and possibly lung (several 5mm nodules in the left lung diagnosed on CT but too small to meet criteria for further investigation!); having to have a low iodine diet prior to treatment and the various pitfalls that you can fall into on this diet.
I'd like to connect with anyone who is living with Poorly Differentiated Thyroid Cancer (PDTC); a large craniectomy; anyone with bony mets from (thyroid) cancer; anyone with experience of metastasised thyroid cancer, particularly Poorly Differentiated Thyroid Cancer; anyone with experience of a brain met; anyone who has been left with a visual impairment, as I have.
I have joined as many forums as I feel might help, but I think it would be useful to have a "Rare Cancers" forum because we face a lot of challenges with the paucity of information available for our particular cancers.
Also, on the Thyroid Forum's Treatment and Diagnosis page, the drop list of words and phrases that commonly occue, including 3 different types of Thyroid Cancer does not include, as far as I could see, Poorly Differentiated Thyroid Cancer or Medullary Thyroid Cancer - both rare forms but still occurring to people who need support. Can anyone at MacMillan do something about this? THanks.
I hope this is a helpful introduction. Look forward to hearing from any of you.
Hi Slugsie I see that you have already been posting in our Thyroid cancer support group.... you may also want to have a look at our Rare Cancers Group...... the New to Community is like the Community reception desk where we 'try' and signpost you to area(s) of the community where you can connect with others.
You can also use the Site Search Tool 
near the top...... put in Poorly Differentiated Thyroid Cancer or PDTC into the search tool - select 'Anywhere' and if this has been mentioned in any posts before....... they will come up on a list.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Do get back to me if you need further help navigating the community.
Hi Slugsie
I'm Steph from the Community team, may I wish you another warm welcome to the Community, although I am sorry that circumstances have brought you here.
We understand that it can be very isolating when you have a rarer cancer. We do all we can to host forums for everyone and I hope you will feel very welcome in both the thyroid cancer forum and the other cancers forum as Mike kindly suggested above 
I'd like to help with your question about drop-down words in the thyroid cancer forum, but I'm not sure exactly what you mean. Please can you send a screenshot of this, or tell us where you're seeing these words?
It might be that you're seeing 'tags' which are added when a member tags their content. The lists of words are dependant on what members are talking about, rather than being a list created by Macmillan.
You can use the search bar at the top to find people talking about different types of cancer. You can search the whole site, or just within forums. With a quick search I have found a few people talking about Poorly Differentiated Thyroid Cancer and Medullary Thyroid Cancer:
I have linked a couple of those recent conversations below, you would be very welcome to continue to search for the specific experiences you're looking for:
I hope this is helpful and that you find what you're looking for on the site. If you would like any further help, don't hesitate to get in touch with us at community@macmillan.org.uk
I’d also encourage you to give our Support Line a call. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
Best wishes
