Update: Ultrasound on the neck

Well it's been 1 year and 3 months since the surgery. My endo finally got approval for me to go in for an ultrasound to check the area where the mass was previously.

In the letter I received from the Endo dated Oct 6, 2014

I have reviewed the results of your tests and the results indicate:

The follow-up CT of your neck showed that the previously noted nodules near your trachea and sub-clavicle  are no longer present.

Recommendations:
Continue you .650 Synthroid dose as discussed at your previous appointment.
Follow-up at Endocrinology Clinic in December.

I'm slightly amused by this letter. I pretty much knew that the CT scan would be clean as it's just been a little over a year. I am asymptomatic still. The surgeon felt that a CT scan would be a waste of time and money until the 2 year mark because of the cancer being a slow grower and it having taken 16 years to grow back the 2nd time. He was more interested in having a PET scan done.

PET scan is another topic of irritation. As that will probably never happen as I'm out of appeals for it and I've already had one 15 years ago therefore am supposedly ineligible even though I fall into the 1% group who has the cancer come back.  Something that no one mentions at the time your originally going through all the diagnoses and treatment planning. 

Will it come back in  15-16 years? Or is it lurking in some other spot where I've got something off that the doctor's can't seem to put a finger on? I don't know other than time will eventually tell. I know that the surgeon is concerned that it could be lurking else where but then he was stunned by how much he had to remove and where it was located especially since he figured it was "scar tissue" and not cancer. Yes, I lived up the bit of a nasty shock for him rep that I have. 

The medical team is still concerned even though they are cautiously optimistic that I've beaten it for a 2nd time and can celebrate my 1 year 3 month +7 day cancer free anniversary with their blessing. There are still the rumbles and whispers over the lack of staging this time. So they are being super cautious about not getting my hopes up too high especially since I'm still extremely hypothyroid although there's been a bit of improvement and I'm "almost" in a normalish range which I've not been for a long time. Hey at least I'm out of the triple digits and down into the teens. That's progress. 

So why the caution well cause the pathologist still won't budge on staging the cancer based just on the mass that was removed and sent in. Now I'm torn between being peeved with him for being a complete idiot and being disappointed with a tiny bit of peeved  and some sympathy for him being a stickler for following the rules. After all it's not his fault that there was an exception to the rule made for him to follow. Recap for those who are new to the saga or to refresh those who remember it faintly from a year ago. I missed getting staged this time on the cancer because the surgeon didn't remove the thyroid and send it in with the mass. The surgeon didn't remove the thyroid to send in not because of incompetence which the pathologist claims but because he simply couldn't remove what wasn't there. He couldn't do it cause it had been removed originally 11 days shy of 17 year when the  first surgery was done and I was first diagnosed with thyroid cancer.

I'm glad there was nothing showing on the ultrasound as it confirms my faith in the surgeon to have done his job fully. Yes, I know I had faith in the original surgeon to have done the same and that was shaken but then I've learned things about the original surgeon that I made me question stuff and got confirmed with this surgeon. So until something like that repeats and hopefully it doesn't. I'm standing on having faith in him.

So any ways that's the most recent update on the thyroid saga. Next one will probably be in December after I make it back to the Endo clinic for a follow up.

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. 

Surgery and Results....

Surgery was 18 days ago give or take. I'm recovering fairly nicely, if  I do say so myself from it. No infection and the incision is mostly intact. No infection equals nothing to concerning. It's a bit tender at times and sweating is the absolute one thing that makes me feel totally helpless enough to make me want to cry. Sweat in a wound of any kind is no fun. It's absolutely horrid when it's an incision on your body.

One of the big pluses about the surgery is that I can now be flat and not feel like I am being choked or someone is trying to strangle me. This is one sensation that really, really freaks me out because of all the times in my childhood that someone tried to either strangle me or smother me as some sort of practical joke they claimed although I'm sure they really wanted to do me in. I last felt that icky sensation when I was transferred to the operating table and positioned flat for the surgery. I immediately knew the surgery had worked when I was laid flat in order to adjust the head of the bed properly for me and it was gone. No more icky feeling of pressure.

Another plus is I can move my head in certain positions and not feel the pressure in my neck that would make me stop and not move my head any further for fear of hanging/choking myself. This means that I can turn my head to see better when I'm doing certain tasks that require it. It's a nice change to not have to move my entire body to see something that most people would simply be able to turn their head in one direction or another to see.

Another plus is I can swallow food that has some mass to it without pain or choking. It's wonderful to be able to eat and chew a normal size bite of say meat and swallow it without discomfort. Especially after a few years of cutting it into beginner solid size bits. I can also swallow some of the bigger pills that I have to take without an issue. I still have something going on with my swallowing but it's not like it was and I can better describe its location now cause I can tell the difference as to where the issue is at.

I learned two new things about myself. One is a new pain medicine I can take that works and without a reaction. The other is Ice. I'd of never believed that these were possible for me because I've long been in the 1% or less category of problems.

The pain medicine is not going to require much explanation. I was shocked that the doctor found something I could take with all my allergies. I admit that I was skeptical that it would work well. I was concerned about reacting to it. After all this is how I learned about several of my pain med allergies like Darvon, Percocet, Aleve, Advil, etc. I went in for surgery or something else that was painful and would require pain meds. I was given something for pain and after a few doses (2 to 3) but before release from hospital a reaction would happen. Hives, difficulty breathing to not breathing, rashes, etc.

So you can imagine my concern when I wasn't given the one medication that I knew works for post op pain in me and can only be given in a hospital setting.  I'll admit to thinking they were loons to not have me admitted for 24 hours of post op pain relief.

Normally post-op pain management for me after a trip to the OR means a cath is placed and a pump attached is attached to a morphine drip. Then for however long I'm allowed I get the blissful experience of a broken give a damn with the only concern being exploding in a shower of piss.Yep, I'm one of those who takes morphine for longer than a few doses 2 to 6 and then I can't pee at all. That's why it's highly reserved to only be used to initially break a pain cycle in the form of a needle jab or where I am going to be cathed. Which makes it superb for post surgery stuff. It also lets me feel the pain fully, no masking like some pain meds can do, but I don't care. This makes it possible for me to move, walk and sleep. Oh glorious sleep... even with the wonderful relief that it brings this drug scares me. The last thing I want to do is wind up like my mother and sadly my dad. So I was a mess between looking forward to some relief/sleep and horrified over having to manage the pain with no relief and mad cause we know that morphine worked why not stay with the tried and true effective...

I lucked out that I didn't react to the new pain med. It just made really, really sleepy. I learned I didn't have to use as much of it because Ice rules. I thought the nurse was a nutter when she asked the are you hurting question. I really wanted to pop up with the no why would you think that... after all I just had surgery a few minutes ago and I was a bit miffed that there was no pump button to push. She said she'd be back with some ice and a pill. This left me feeling stupid cause I didn't want morphine pills and I couldn't see the point of the ice. Oh am I ever glad of the ice. It helped to have something against my incision especially when having to move. It hurt to have it against the incision cause ice is jagged and hard and being jiggled didn't make it feel to good when something moved me. Either bumping the bed, a bump in the road, dog jumping on bed at home to say hello, sudden slamming of brakes... I loved the ice so much that I chose it over the pain pills. I think I was able to get off the pain pills so quickly was because of the ice. Oh don't get me wrong I loved not hurting and getting good restful sleep. What motivated me to get off is I didn't like the thick wrapped in cotton feeling and I really didn't want to risk having a reaction. I felt like a clock was ticking and the next dose could/would be the last dose. So I relied heavily on ice.

Another thing I learned from this surgery is that super glue rocks. I loved that I didn't have to go back for stitch removal. I loved that I didn't have to be restitched up and I didn't have the everything is falling out feeling because the staples let go too soon. (yes, I had this happen about 6 hours post surgery. The staff and dr were not amused. I really wasn't amused cause there's nothing like getting sewn shut while waiting for the Bendadryl to kick in to deal with the hives to cause one to lose all sense of humor).  I didn't have a huge dressing weighing down on my throat and neck. Something that really bothered me after the first surgery. Other hand concern for rough seams of shirts or other things rubbing it the wrong way. and keeping it dry. yes a bandage would have helped with this to a degree and I'm still confused as to why I didn't have a dressing but no dressing changes are always good. Another nice thing is the look of the scar. I don't care how my scars look for the most part. I'm not my mother after all. I had surgery in the same spot in the past and was left with fatter scars from it. I also had a lot of puckering, issue with clothing catching, rubbing  wrong, and didn't want to have to go in for scar reduction which I wouldn't have thought about if my auntie hadn't kept mentioning it. That was soooo not a good experience. I'm happy to say I don't have any of this and I strongly suspect that it's cause of the super glue. This is the only surgery I've had with super glue so i'm not a 100% positive. But if it is, sign me up for it in the future.

The results were a little bit of a shock. Now I had already had the Endo tell me that he suspected cancer because of the rapid change from his not feeling a mass to his feeling a mass. I had an estimated size of the mass because of the cat scan and ultrasound that were done. So you'd think I would have been prepared for the results right? In away I was and in a way I wasn't. the mass was far larger than the 2 cm I was told it was suspected to be. Considering how great the contrast was between lying down flat pre surgery and post surgery I wasn't really surprised.  It was  cancerous. Again not really surprised. What I wasn't expecting was that it would be  thyroid cancer.

Papillary thyroid cancer to be exact. I'm still not sure I have wrapped my head around this diagnoses. i don't have a stage at this time. I don't have a treatment plan. I do have a ton of questions that are darting around in my head like minnows in shadows at the lake. How did this happen? Why didn't the radioactive iodine 131 work? Was it there before the original surgery or did it show up afterwards? Now what? There are others but they aren't ready to be voiced because they aren't fully formed just yet.

I am in the 1% yet again. I don't know why I am stuck being in the 1% on things. I don't even know what the 1% means really. I know that sounds odd but other than thyroid cancer being 100% cured in 99% of the population that gets it; 1% aren't. So yes, I get that I was/am in the 1% that didn't get cured. I just don't know where I fall into that 1%. I've been given statistic that are confusing. 85% of the 1% do just fine and are cured and 15% aren't and need further treatment. But that just leaves me more confused... If you can't tell math isn't my strong suit and I got lost with how can you get 85% & 15% out of 1%.  Am I in the 85% or 15%? no one so far can tell me.

I'm scared like i have never been scared before. I who have overcome many terrifying and scary things is afraid. I'm confused and a bit angry at being afraid. I'm also extremely tired of being told I should not be confused and scared. From a dear relative who meant well but is really clueless. You spent 4 hours trapped inside an elevator that could have fallen several floors to your death and you didn't bat an eye and studied instead, how can you be scared? From a very dear old ancient friend. You were the only one to walk away from the ___ accident(s) and you can get into vehicles and travel those road(s) afterwards. How can you be afraid of this? I can't explain it. I just am.

I think it has to do with my innocence being shattered. OK you can stop laughing now. Really. I know it's funny to think of me and innocence together but I'm trying to explain something that I don't know how to explain and your laughing is distracting. During all that time when I was in tough situations, I had two things going for me. Death would be preferred and doctors are perfect except for when they aren't. another thing that was going for me back then was that I didn't have the knowledge I do now and I didn't have a reason to go forward. I know now just how big a blunder doctors can make. I have kiddos who need me and are going to need me a lot longer (rest of their lives) than most kiddos need their mother/parent. and that is why I am more afraid.

I don't know about you but for a doctor to say that they are sorry for making a mistake and thinking I was certifiable crazy as a loon when I really had a problem scares me a lot. to have a doctor tell me that they aren't sure what the steps will be from here on scares me a lot. to have a doctor say that they weren't expecting this and hadn't prepared for this scenario scares me a lot. Especially in doctors who have repeatedly seen me falling into the 1% of situations. I know they can't be experts in everything.

I now have to wait until Sept apt to learn the rest of the information and what my options if any are.