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My experiance with thyroid cancer nov 2009-oct 2010 (LONG)

nasher
Posts: 507
Joined: Apr 2010

I have pulled info off this for multiple people to answer questions i though i would just give a year in review... this is as i keep telling doctors when my body's warinty expired.

Nov 2009 through Oct 2010.

In late November I realized I was getting mild depression and my workouts were getting harder to do and basically was running out of energy. I was also finally getting the follow-ups setup so they could deal with my loss of hearing (Stapendectomy) so I managed to get an appointment with the ENT Clinic.

While doing the setup for the Stapendectomy preparation Dr H. noticed I had a lump in my throat and sent me in for further testing. I was diagnosed with a large thyroid mass Dec 2009 Bremerton Naval Hospital in Jan 2010 they determined the mass was follicular cells but could not determine by fine needle aspiration if it was cancerous or not but since it was making it hard to breath they decided to operate to remove my right side thyroid this happened on Feb 22 2010. The surgery went well and the next day I was released from the hospital to recover.

On Feb 25th I had the first visit to mental health but do to the fact that my hearing was as bad as it was along with the recovering from surgery I was rescheduled for a later time. The only problem I had with the surgery was hiccups that lasted about 10 days, I was told this was due to the tube they put down your throat during anesthesia.

On March 2nd I was told I had several small foci of papillary carcinoma in the tissue of the right thyroid that was removed and that the entire mass was being sent to another hospital for further research but it looks benign the doctors recommended removing the other side, we decided that was the best plan.

On March 8th I had a full eye check and they gave me a new prescription for glasses along with noting that I should have more frequent eye checks (6 months – a year) do to the fact that thyroid issues can cause vision changes.

On Mar 09 2010 I had a thyroidectomy completion surgery. The initial screening showed no cancer on that side once removed.
The surgery went well but do to low calcium and magnesium levels (parathyroid(s) where not fully functioning) I was kept in the hospital for 2 days to ensure my parathyroid’s were maintaining proper levels. This was my 2nd bout of hiccups from surgery again they lasted about 10 days.

April 2nd Madigan Surgery Stapendectomy was performed on my right ear. This was an amazing surgery within seconds of becoming conscious I noticed how loud everything was. A few days later I realized that I had not heard things like birdsong in 3+ years. Since then I have had minor vertigo and a small section of my tongue tastes like metal when eating (supposedly this is do to the taste sensor in the ear?). Another good point I did not have any hiccups from this surgery.

On April 19th I started on the low iodine diet and stopped taking Cytomel in preparation for Radioactive Iodine treatment.

On April 20th I was informed that the results from Armed Forces institute of Pathology Washington DC and the summary was that the large mass of follicular cells was also cancer.

Follicular carcinoma minimally invasive (7.1 cm)
and 6mm papillary carcinoma w/ adjacent 2-3mm papillary carcinoma another section 6mm papillary carcinoma and right parathyroid lymph node with thyroid carcinoma 8mm.

It was another small blow knowing that I had 2 types of thyroid cancer not one. They said they caught it early though and think they were both stage one cancers. I was also informed when they removed my thyroid there was a parathyroid gland in each of the thyroid sections removed (so I have 2 of 4 parathyroid glands removed as well) this is probably why I had minor problems with calcium and magnesium levels.

28 April started my normal visits to mental health. But I was informed that they would be delay in visits while I was recovering from radiation treatment.

On the 3rd of May 2010 I went up to Madigan for a scan of my body for radiation followed by my first uptake dose of radiation (RI-131 UPTAKE) 8.1 uCi of I-131 t1/2= 8 days.

On the 4th of May 2010 I was back at Madigan for a radiation count on my thyroid followed by my second uptake dose of radiation (RI-123 UPTAKE) 2.8 mCi I-123 t1/2= 13.2 hours

May 5th 2010 was the big day they did a multitude of CT scans (multiple scans over a 3 hour period) followed by a long conversation with the doctors about what they were going to give me. After getting checked into the radiation isolation room #625, they brought me my dose of radiation 175 mCi of I-131 t1/2= 8 days. I was hospitalized and bored out of my skull till Friday May 7th when they released me (I had to get my levels to less than 7mr/hour at 1 meter). The only good thing is that they have taken me off the Low Iodine Diet and are starting to give my Synthroid. The problems I have had with the radiation therapy metallic salty taste in mouth and constant dry mouth. Every now and then my salivary glands hurt a bit massaging them helps. I have been drinking a lot more water because of the dry mouth condition and always wake up with an extremely dry mouth.

On May 14th I went back to Madigan for follow-up CT scans. This was a process of 1 10 min neck scan followed by a 40 min full body scan and then a follow-up 10 min scan for an area that wasn’t clear on the first scan (guess I moved too much) but I was informed by the tech unofficially that the scans looked clean.

On May 17th I went to Bangor clinic for a update with my primary care provider and we discussed things like my recovery plan and basically made sure that they had a full picture of my current health. They did look at the CT scan report and told me that all the radiation was in the neck and that was a good thing and the scan looked clean but I will have to wait for the official follow-up with my endocrinologist on the 18th of June for the “Official” results. Also I had a follow up with my mental health provider.

As my health slowly improves I am starting out my workout regimen again and slowly building my strength back.

I resumed my mental health appointments with Dr E. on the 24th of May. He admitted that he would have liked to have seen me when I was still had my thyroid issue but we will work from where I am. He has started scheduling me with weekly appointments. He also said he would slowly decrease our visits since I am not having the depression issues and I am in “a stable mental condition”. I am defiantly feeling much more mentally stable after I was put on Synthroid.

On June 10 I had my follow-up with Dr H. for the thyroid removal and got another unofficial look at the CT scan. She stated that they would not give me a definite “Clean” till I am 1 year out of radiation treatment. She also gave me hints to help minimize the surgical scar.

On the 18th of June I went back to Dr Ch., Endocrinology at Madigan for follow-up on my CT scans and to check the balance on my thyroid meds. He currently thinks they are looking good at the level I am at and wants to wait till December before he adjusts them. He also said that the CT scans looks real good and would tell me more in December time frame.

July 7th had my post surgery hearing test to determine how much hearing I have regained... it is a lot... I still do have some hearing loss in my right ear but it is not something to worry about now, although they say in the future I may need a hearing aid.

July 14th Thursday Bangor Dental appointment with x rays my teeth look healthy just needs some cleanings, they also checked to make sure the radiation therapy I had didn’t cause any tooth damage, so far so good.

July 15th Friday Madigan hearing consult from first ear surgery and pre surgery plans for 2nd ear surgery ENT clinic follow-up from thyroid surgery and the start of the planning for my 2nd ear surgery. They said the scar from my thyroid surgery is mostly healed and looking good and that we can start planning the 2nd ear surgery.

July 26th Another mental health appointment, another good visit he is defiantly happy with how I am doing and we are figuring out that I probably don’t need too many more appointments for now at least.

29th of July. Had a visit to ENT clinic at Madigan and then I did my pre-op for left ear surgery. This was another full day at Madigan because it takes 4+ hours just to get through the line and get through the Pre Admission unit.

2nd of August was my last visit with Dr E., he thinks am in a stable mental state and we both agree that more appointments right now probably wouldn’t help any. As of august I am no longer seeing mental health, they think I’m normal, and I am feeling a lot better. One less medical appointment set to have to worry about

Dr H. thinks everything is looking good and she retires on the 19th of Aug. If I need to see someone in the Bremerton clinic for follow-ups it will probably be her replacement Capt C. Cupp (never met him).

I am still thinking the level of Synthroid is low for me but according to Dr Ch. I am in the normal range and will worry about that in December time frame. Everything is looking good cancer wise… they will tell me more in December when I meet with my endocrinologist.

Early in August my kneed started acting up (been giving me pain for 7 years but I was told they couldn’t do anything about it. Now though my right knee has been making me limp a bit for the past few weeks will have a Dr Appointment while on convalescence leave. For now though they can’t give me any anti inflammatory meds because I am too close to surgery and I can’t take anti inflammatory meds prior to surgery.

On the Aug 18 I had my 2nd Stapendectomy surgery with Dr C2. and his team (same group who did the right one). Do to how well the first surgery I was not expecting any problems although I am always nervous about surgery. Ear surgery went well… on the 19th I started getting my hiccups and those lasted 7 days… I did manage to get an ear infection on Friday Aug 20 and by Sunday evening I was at max allowed pain meds and it wasn’t helping. Went to Bremerton naval emergency and they put me on oxycoton and told me to go to Madigan on Monday...

Monday the 22nd at Madigan they gave me valium to go with the oxycoton... didn’t really help the pain I just didn’t care about ANYTHING… Tuesday night I started the antibiotics (1 day early) and by Friday the 27th the pain was back to where I only needed Tylenol.
2 Sep end of my convalescence leave, and back to work.
3 Sep had an appointment with my primary care doctor for setting up appointment for my right knee and more ear drops for the infection.

On the 9th of September I had an appointment with my PCM and he confirmed I still had a major ear infection and gave me different antibiotics for it. He also set me up with some Blood tests and put in the recommendation for a full Sleep Apnea study in Silverdale.

September 13th I had my follow-up at Madigan for my ear surgery, I still have dizziness so they scheduled me for a follow-up hearing test as well as a CT scan and some Vestibular (Balance) training. Also we will have to delay the sleep Apnea testing till after I get my vestibular training done and I can sleep on my back and side.

On the 16th of September I star my physical therapy, I have defiantly noticed that during and for the next few hours after physical therapy my knees hurt a lot more… as expected for the next 4 or so days the pain is greatly reduced and I can walk better.

September 17th took S. to Madigan for her weight loss surgery; J. came with me to help me through the waiting. Surgery took 6.5 hours and everything went well. I visited her in the hospital on the 18th she was looking real worn out that day, but by the 19th when I took Sylvia there she was doing much better.

The week of the 20th to 25th I had my first run-through of TAP class, there is so much information they give you there I am so glad I can go again prior to retiring.

On the 21st while I was in class J. was up at Madigan for some of her medical appointments and while there she picked up S. who got released from the hospital that day and took her to Sylvia’s house.

On the 28th I had my appointment at Dermatology, recommended by the ENT people at Madigan. They have removed most of the mole on my eyebrow and sent it to be checked for cancer. It came back normal non cancerous.

I also had a Nutrition Seminar on the 28th and found out that some of my energy, pain problems might be related with my Vitamin and Mineral levels. The Nutritionist who gives this seminar said she would check through my medical record to make sure my levels were normal and if she couldn’t find all the blood tests she would order them so I could get my nutrition balanced.

On the 30th I had Fasting Labs for the blood work the nutritionist wanted. We also scheduled appointments for me with the same nutritionist that S. has been using for her weight loss.

From there I went my 2nd physical therapy appointment, I am getting more movement in my knee and overall the pain is less, He also suggested some things I could try to help my balance while I was waiting for vestibular training to be fully approved by Tricare and setup.

On October 4th I had my first appointment with Su., the nutritionist, and she told me that looking at what lab results were in the system that my calcium, magnesium and potassium are all low. A few days later she called again and said that my Vitamin D is also very low and I would have to have another appointment with my PCM to get high dose Vitamin D pills.

Also on the 4th I have a physical therapy appointment with one of the technicians and he did another wonderfully painfully session but the next 2 days there was basically no knee pain.

On the 6th I had my hearing test from my 2nd ear surgery, it came back that my left ear is defiantly almost perfectly recovered (to what bone conduction reads) and said I will not have to worry about hearing aids for a few years at least. He also said he was worried about my balance issue.

On Friday the 8th of October I will have the stitches removed from my eyebrow everything looking good.

18 October. Another trip to Madigan with another appointment with ENT at Madigan. I didn’t get to see the Dr’s who did the surgery the Dr I did see told me to hold off on the CT scan and to go back to it if the vestibular training doesn’t work. She also told me that if I need another surgery to fix the problem that there is a 10% chance I will lose all hearing in that ear, and being that it is my better ear I seriously hope I don’t need to get surgery.

October 25th had my first Vestibular training they had me bring S. incase the therapy makes me too dizzy to be able to drive. I will admit it defiantly made me dizzy but I was able to safely drive to work afterwards. Learned its horizontal vertigo or that’s what Co. (my torturerphysical theraphist) said. She gave me a few homework assignments Head and Eye (vor), some walking exercises and “habituation (brandt-daroff)” exercises

October 26th it has been a few weeks since I had physical therapy for my knees and I admit my knees are not hurting as much as they were before I started but work has not had workouts for the past 2 weeks so I haven’t been stressing my knee either. Now that I have my Vestibular training times setup I hopefully will be able to schedule Physical therapy for my knees without conflicts. Another thing I get to consider is that when I get dizzy my knees tense up and start hurting a lot more so now that I am doing the Vestibular training I will be having more knee/leg pains. My personal torturer is U. and he is defiantly good at his job of making me hurt for an hour + so I feel better later. He got out the floor roll to start working on my leg muscle as well man that hurts. Was able to do up and down 3 times each leg. Also put me on the We fit balance game and I completed it on the 3rd try.

After the physical therapy I will probably be attending my first cancer survivor group at Bremerton Naval. I know it’s a bit silly but I am kind of nervous of attending the cancer survivor group. Meeting went good although it was just me S. Cheryl and the leader of the group this time normally they have a few others.

I am still having the constant dry mouth and the metallic taste is still annoying.

Days to Celebrate

2 Mar 2011 1 year from being told I have cancer.
9 Mar 2011 1 year from having thyroid removed
5 May 2011 1 year out from treatment (for radiation)
30 Nov 2011 Official Retirement from Navy

UPCOMMING
Date location
11/02 Harrison Vestibular training #2
11/04 Bremerton Physical Therapy (Dr)
11/05 Harrison Vestibular training #3
11/08 Bremerton Physical Therapy (with Technician)
11/09 Harrison Vestibular training #4
11/12 Harrison Vestibular training #5
11/15 Bremerton Physical Therapy (with Technician)
11/16 Harrison Vestibular training #6
11/19 Harrison Vestibular training #7
11/22 Bremerton Physical Therapy (with Technician)
11/23 Harrison Vestibular training #8
11/26 Harrison Vestibular training #9
11/29 Bremerton Physical Therapy (with Technician
11/29 Bremerton Lab's for Madigan Endocrinology
11/30 Harrison Vestibular training #10
11/30 Bremerton Cancer Survivor
12/03 Harrison Vestibular training #11
12/06 Madigan Endocrinology labs 1 week earlier

Finnegan1
Posts: 21
Joined: Sep 2010

I can't even think of what else to say. . .
You have been through the wringer my friend. and I applaud your sharing of this with all of us. Thank you. It helps, knowing this, somehow.
You have been the source of alot of people's support on here, I think. I know I really appreciated hearing back from you several times along the journey.
God Bless you on your path Nasher, and thanks again.

cherrycutie
Posts: 3
Joined: Nov 2010

Thanks for sharing your story, nasher. I had issues with low calcium and vit D during the summer of '07 when trying to get someone to pay attention to my thyca. You may already know this, my endocrine doc recommended I take Citrical +D Max, NO GENERIC, NO SUBSTITUTIONS, because this is the most easily absorbed calcium & D. Also, no calcium at the same time as multivitamins or iron-rich foods, because the calcium and iron block eachother's absorption. Good luck to you, and I'm glad you have days to celebrate :-)
Love, cherry

nasher
Posts: 507
Joined: Apr 2010

once i get down to only needeing that much D I will probably take it but right now i am takeing, Ergocalciferol (Drisdol Eq.) Capsule Conventional 50,000 Units (1.25 mg) Oral weekly till my Vitimin D levels get back to where they should be.

also Citrical +D Max has both calcium carbonate and Citrate. myself for other medical issues i need ot be only on Calcium Citrate cause it absorbs much better. there is a Citracal® Calcium Citrate + D3 though.

swt_reyes
Posts: 28
Joined: Nov 2010

I have to say you are an inspiration for me now knowing all you have been through and yet you continue to fight this battle for life! You are amazing! I am so proud to hear you on your journey fighting all these tremendous battles. If you can make it through all that it gives me hope to think I am only having to have a thyroidectomy. May you have strength along the way through your days and love from all. You are a very strong woman, and it seems as if you are very positive, as all this bad luck has not gotten you down too much. Thank you for sharing your story and I pray for you and your well being from these days forward!

Sincerely,
~Christy~

nasher
Posts: 507
Joined: Apr 2010

thank you and I hope this helped.

I am actualy one of the less than 25% of they thyroid cancer cases that happens to me Male though.

I do seriously recomend makeing a personal blog like posting as you go through your treatments as well I have found it so helpfull when i need to look a date up as well. I also used my personal blog to update my friends and faimly as they ask.

I keep telling people I should have bought the extended warenty on my body as to me it appears my warenty expired when I turned 39. 1 year later I am now 40 but it always helps me when i look back at the year and look forward to the future.

yes I keep myself positive as much as I can although I do have my bad days.

The main reason I posted a much sortened and edited experiance was to help newly diagnosed people and hopefully answer a few of there questions.

remember you are a survivor and you WILL survive

swt_reyes
Posts: 28
Joined: Nov 2010

Nasher,
Please do accept my sincere apologies, I feel like a dork! Yes I should have probably looked at your profile and then I would not have mistaking you for a woman. I was aware it was mostly women who get this disease, however you were one of the unfortunate men that this nasty disease invades. So your wife had the very same problem? Wow that had to be mere coincidence. I wish you & yours the best life has to offer you for the future!

Sincerely apathetic,
~Christy~

shaan
Posts: 1
Joined: Dec 2010

hello,i want's to say about thyroid cancer.it is dangerous disease.i wants's to know more about this.i was see some information in this site http://cancerorganizations.net/results/thyroid-cancer

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