September Results are...

I'm sorry I didn't keep my promise to post the results as soon as I got them. I do have the results but I don't know what they mean. It's all rather confusing and I've been trying to wrestle with feelings, emotions, and process the information that they provided. To say I am feeling confused and angry is pretty accurate maybe with a little bit of fear mixed in. It's such a dramatic change from how I was years ago. Confident to the point of cocky that something would and could be done about the cancer. I've expected the same this time around. OK this isn't going to make a ton of sense as it's jarbled and rambling and long but it is what I have to work with straight from the tape recorder.

I'm no closer to having answers than I was three months ago. the only thing I have an answer on is that I'm still hypo thyroid as I'm at an 11.? something the ink smeared so the dr couldn't read the last part of the lab tests results. 11 something is a lot better than 60 or even a 100. 

My thyroglobulin is gone.  This is a good thing. It was suspected that the surgery would make it disappear so that's one positive from the surgery in July. It's also indicates yet again that if thyroglobulin shows up that it's a red flag that the cancer is coming back. He's hoping that I'll get at least 1 to 3 years thyroglobulin free time min before it starts coming back if it's going to come back. I don't know if that's possible because it was around 29 months that it showed up last time and was dismissed until June of this year. He's increasing my doses to like .900 daily for the next 3 months to try to get me out of hypothyroidism.

The pathologist who did the peek at the mass that was removed didn't stage it. So I have an estimated stage. Apparently the lack of the thyroid gland itself means it couldn't accurately be staged so it wasn't worth the effort to stage it. I'm in the dark as to where I am on the scale. Unfortunately this is critical information if I want to be taken serious about getting a referral to an oncologist, the stuff with my dd's future, and a few other things like future health care.

The mass that was removed in July couldn't be staged because there was no thyroid to go along with  the mass and due to the butchery from the original thyroidectomy 16 years ago. Because the original surgeon didn't do the surgery in July and the changes the original surgery did to the landmarks and grooves and some other things it's hard to get an accurate picture of just where this mass was and what it was doing. Without the original information and going just off of what was sent it was to hard to do a stage. So that means the doctors are going to stage me off of my age and the fact it was in the lymph nodes and not off the reality. 

Clear as mud? Will it be accurate no. The stage that I am given will not be accurate and it could cause long term issues with far reaching implications. It sets me up as looking like a first time re-occurrence  not a 2nd time re-occurrence. The endo is pretty positive that this will impact my future treatment and my candidacy for dd's guardianship but his hands are tied because the pathologist didn't stage it and he can't really stage it because of lack of information in my files. Death and retirement of medical providers stinks.

So this is how it breaks down per a Wolters Kluwer scale. I'm not sure what that is. I get a TX primary tumor cannot be assessed score. Why? It was removed 16 years ago. I get a T3 score because of it being over 4 cm in size but because of the original thyroid missing, I can't really have a T3 because 1. I have a TX 2. can't tell how this mass was laying in relation to the original cancer in the thyroid 16 years ago.

I also get a T4a because of the size of the mass being far larger than anticipated but because they can't say how far beyond the original thyroid capsule it was they can't score me with this either. Since it didn't make it into the carotid artery or mediastinal vessels. I can't be a 4b, because both or at the very least one has to be involved and neither are with me.

I do get a N1 because it was in the general area of the thyroid and it was in the lymph nodes in that area and lower and metastasis was proven/shown/seen this time because of the size of the mass removed plus the cells it contained and it was in lymph tissue. But because of the lack of original tissue they can't say if it's an a or a b.

I do clearly have a M1 as it was distant and distinct metastasis (again lymph tissue being filled with it instead of thyroid gland tissue which is clearly because I don't have a thyroid any more.) so the best they can do is say the following. Since your under 45 yrs old with a M1 and a N1 and that means your most likely a Stage 2 M1.

But in the endo's gut, a Stage 2 M1 isn't accurate. Why? Because this isn't a first time occurrence of papillary cancer cells, it's in the lymph nodes but no one knows exactly why it's there. Was it present from before or after the surgeon removed the thyroid and surrounding lymph tissue 16 years ago? A questions I'd dearly love to have answered thank you very much. 

He's thinking I'm probably a Stage 4 because of the clear size, lymph node involvement, the questionable follicular stuff, and the garbled notes he's found from those involved in my care for thyroid cancer 16 years ago. At this point and time it's still uncertain where my records are at from the disappearance of 3 of the medical team members (death and retirement). Also because of stuff going from paper to electronic.

I still can't get an answer to the question of Why didn't the cancer show up on the PET, MRI or CAT scan in 2010 and prior? no one knows why it didn't show up as clearly cancer just as tissue that might need to be watched. Everyone is in agreement that the size of the tissue removed it should have shown up in one of those tests. Especially since it tested positive for thyroid cancer. This does make them wonder how many other bumps and lumps I have that will also come back positive if removed and dissected. But since the thyroglobulin is gone there's no need to look further at these weird masses.

When do I need to get concerned about enlarged lymph nodes? When do I just ignore them? I am to not worry about lymph nodes in the future. This is less than satisfactory as the dentist is very concerned about the enlarged lymph nodes he's finding that have gotten bigger instead of smaller with the two month big gun antibiotics treatment I just went through. The dentist fears it's something more serious based on what July uncovered and my weird medical family tree.

When do I get to speak to an oncologist? I don't. I don't have any reason to bother an oncologist at this time because I don't have a true stage and clearly surgery corrected the problem.

Papillary or follicular or both? It was positive for papillary and no follicular showed in the sample that the pathologist received. Could the follicular cancer be lurking? Yes, but I'm not to think on it because it hasn't show up yet.

Mysterious lumps and bumps that I have should they be checked for cancer? No. It's not felt that they need investigated because while they are growing in size and some could be lymph involved due to location and they didn't show up on the MRI, PET, or CAT scans as pure cancer. When I said that this didn't show up as cancer either on the scans oh that's right was the response I was given. Well we won't worry about it until it gets bigger so don't you worry either. Nice try. I'm worried because when the first showed up they were the size of a pea, then they went to a quarter and now they are the size of a hen's egg. (Rhode Island Red if you want to be specific ) They show to ultrasound and they show like the mass in my neck did (in fact the mass in my neck that freaked everyone out is word for word written about these other ones). It's been advised to get them checked but not considered worth it at the moment; so no referral for further testing or guidelines as to what to make about them. This doesn't sit well with me.

What can I do to prevent a re-occurrence of this from coming back? Nothing. It will probably show up again because it's showed up now as there's no rhyme or reason as to why it showed up now. Since it's slow growing it will probably take at least 15 to 16 years and hopefully technology will have advanced enough to catch it next time. Everyone is convinced that there will be a next time but not convinced enough to refer to oncologist or to look further for treatment options.

Will I have to do the radioactive iodine treatment again? The endo and ENT are unsure if I will be able to do this. I've already had several doses of the radioactive iodine and I still had to have a mass of cancer cells removed so that would be up to an oncologist and yet, I don't get to see one.

When will I have to do it? They don't know as that's up to the oncologist but not for awhile because I need to heal and recover from the surgery in July still. I also need to get out of hypothyroidism.

Will I have a repeat ultrasound? Yes, a repeat ultrasound will be sometime down the road probably in the 3 to 6 month ranges in order to give my neck a chance to heal up from the surgery.

Will I have to repeat a thyroid scan? Yes, will probably be in 3 to 6 months depending on my labs or it could wait for 1 year.

Lab work will be done at the end of Nov for a mid December apt because of being on .900  thyroid meds.

Since I'm in the 1% of the population who has the cancer return; It appears there's not a lot known about why this happens or what to do. Each question and concern that I had was pretty much brushed off and dismissed as being irrelevant. I was told again to take every day as it might be my last. I probably have a year of good clean cancer free time. Yet, because of the lack of staging;  they can't tell me if I am in the serious category or the minor category of the 1%.

 The thing that is being brushed off and over looked and is upsetting me the most is I had two cancers in my thyroid and surround tissue that I shouldn't have had because of my age the first time I was told I had thyroid cancer.  I was in my 20s then and had fought for 7 years to be taken seriously that something wasn't right. That's when both types were found which usually don't show up unless your older like not until the ages of 30 to 50. If it didn't wait until I was the proper age to medically have it then.... if it can't be staged..., then how accurate is it to base things like my treatment or lack of off my age now? Because when that was done previously it missed getting it dealt with sooner.

I was told repeatedly by several endos and an ENT that I was too young to have thyroid cancer. I was ridiculous to even consider that I might have it based on some lame high school genetics portion of my biology class.  It gave the cancer a chance to grow and to spread. So that instead of being all clear, I'm dealing with it now. Having me put it to him this way he could see that the stage 2 means nothing and that I am more than likely a higher stage but without the original tissue, records and notes I'm going to be treated as if this is a first time age appropriate cancer happening. To sound a bit like a very spoiled two year old.... I don't think that's fair at all.

I don't know why but I can't help feeling/thinking they are missing something. Of course this was made a stronger feeling when the endo came in and introduced himself and said he was glad to meet me for the 1st time. Granted he was a little frazzled as it was almost 5 p.m. when he came in and I was his 2:45 p.m. patient.

So there you have it.  That's where I am at in this journey. I won't be able to update until sometime in December when the next step is under gone what ever that means. 

Thank you for making it to the bottom and thanks for listening.