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Need Help!

skcalkins
Posts: 39
Joined: May 2010

I have been hypo for 10 weeks now so I will try not to ramble:

Had total thyroid removed 5/7/10, Bloodwork cancer marker# 911.4

100 mc RAI 7/9/10, Bloodwork after Cancermarker# 68.4

So found out on Dec. 22 that my cancer marker number was 68.4 doc said it should be like.5 so the knew the cancer had spread so had to go off my meds and we did the full body scan on 2/9/11 then a CT on 2/22 that showed a large mass of lymph nodes involved on rt side and a mass under my clavicle that I was told could not be removed. We did the biopsy of the lymph nodes on 2/25 and are waiting for the results back on it but are fairly certain it will come back cancerous.

I have two questions:

The radiologist said something about possiable Lymphnomia(not sure if spelled right). What does that mean? Was a little shell shocked or would have asked my doctor.

Second I thought I saw someone else on here that had a mass behind the clavicle that couldn't be removed also and I have tried to find the thread but it's had for me to focus long and haven't been able to find it. Will it get killed with the much larger dose I will be getting? Sorry for being lengthy but wanted to give background to any that don't know my story.

BTW mine wasn't supposed to be cancer we were only going to remove the right side of thyroid because it was pressing on windpipe found out cancerous when biopsied second time while on operating table.

Thanks for any help,
Shawna

skcalkins
Posts: 39
Joined: May 2010

Is there no one here that has any help on this one?

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Shawna,

First I want to say that I am so sorry you are going through this. I know this is a lot to swallow and it's really scary for you. My thoughts and prayers are with you. You will feel better once you are back on your meds.

The Radiologist was probably talking about metastasis to the Lymph nodes. It's not the same as Lymphoma. Lymphoma is a different type of cancer. It sounds like you already had metastasis to the Lymph nodes and behind the clavicle before your Thyroidectomy. RAI doesn't kill tumors, it only kills microscopic cancer cells and remaining Thyroid tissue. So, if the tumors were already there they wouldn't have been affected by the RAI.

Regarding the inoperable clavicle mass: they can probably do alcohol ablation or another type of treatment. Don't worry.

Take a deep breath, take one day at a time and get back on meds as soon as possible so you can think again. I wish there was something I could do to help you. You will get through this. Be strong my friend, you are not alone.

Blessings,
Julie-SunnyAZ

skcalkins
Posts: 39
Joined: May 2010

Thanks Julie,

I agree that the lymph nodes were probably already involved when the did the first surgery and had we known it was cancer my surgeon would have removed them. I have been blessed with great doctors.I'm usually o.k and take it one day at a time just for the past couple days I have just felt lost I guess. Been having alot of nightmares lately, I had them the last time I went hypo not sure if there is a connection or what.

Again sorry I think I just lost it for a minute:)

Shawna

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Shawna,

No need to apologize. I would have lost it too, anybody would. I know that this is really tough to go through. The fear of the unknown is the worst part. I still have really bad nightmares even on my medication. Just had some last night. I have been having them since before I found out I had cancer. They started when I was going hypo, gaining weight and having heart palpitations. I would wake up in the middle of the night in a cold sweat with my heart racing and my pillow drenched in sweat. It was obvious something was wrong then but my doctor kept ignoring it. He said it was early menopause. What a joke! I was only 41 years old. I'm 43 now and still no signs of menopause.

Hang in there. This too will pass and we are all on your side.

Blessings,
Julie-SunnyAZ

sfl67
Posts: 55
Joined: Nov 2009

Shawna,

You mentioned trying to find a thread related to mass behind clavicle; I read a reference by changoslf dated 1/28/10 in case this is the post you had seen. It is listed under Thyroid Cancer, Radical Neck Dissection-harumph. Hope this helps.

Best wishes

skcalkins
Posts: 39
Joined: May 2010

Thanks sfl67 I posted something with them and hopefully that can tell me what to expect.

Shawna

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