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newly diagnosed stage 4 m thyroid cancer

butter999
Posts: 13
Joined: Feb 2012

I went to the ER for a UTI and they found spots on my lungs,thyroid,and in my bones.
All of the tests and biopsies were done in 2 days.
Now I await the final diagnosis and recommended treatment plan.
I love living am 53 female Floridian who has 3 chidren and a Grandson.
please tell me of your successes and recommendation

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

What a lot to absorb in two days. I can relate. So hard to stay calm, especially when you're awaiting news and recommendations. It's easy to get ahead of yourself. One day at a time. So easy to say, so hard to follow, I know.

I highly recommend seeking out a thyroid cancer specialist - one who deals with advanced thryoid cancer because many endocrinologists are not able to remain on top of the studies, treatments, etc. Lung mets can be difficult to treat. The first line of treatment for any papillary thyroid cancer patient is surgery followed by RAI (radioactive iodine treatment which targets thyroid cells).

Two fantastic sources of information online (for me anyway) have been the thyroid cancer survivor's association (thyca.org) and the adv-thyca discussion board on yahoogroups. The advanced thyca group has many very knowledgable members who are dealing with complex cases. They will understand your situation and be able to offer recommendations of all kinds (specialists, options, etc). People on this board are also a great help - though I'd say most are facing less complex situations.

I'll be thinking good thoughts for you. Know you're not alone.
eileen

(I've been through surgery, RAI, external beam radiation, and now oral chemotherapy - still feeling pretty good and loving life too)

butter999
Posts: 13
Joined: Feb 2012

Dear Eileen
Thank you for your reply.
Could you help me to find the best MD
I have metases to the bone and NCA said I wasnt
a surgical candidate.
What was most effective for you.
I want to live with quality.
If you have any more suggestions, I would be grateful.
maryann

miladyx
Posts: 85
Joined: May 2009

Do you know what kind of thyroid cancer it is?

butter999
Posts: 13
Joined: Feb 2012

He suspected follicular or pappilary. However,since all of the tests were done
last Friday and Saturday we are still waiting for the results.

butter999
Posts: 13
Joined: Feb 2012

IT IS ALL OVER LUNGS, LIVER, BRAIN, BONE, NODES.
YET I HAVE FEW IF ANY OF THE SYMPTOMS
LITTLE ACHE IN THIGH.
WHAT DOES ANYONE KNOW ABOUT NEW ORAL MED/OR SURGERY???

butter999
Posts: 13
Joined: Feb 2012

IT IS ALL OVER LUNGS, LIVER, BRAIN, BONE, NODES.
YET I HAVE FEW IF ANY OF THE SYMPTOMS
LITTLE ACHE IN THIGH.
WHAT DOES ANYONE KNOW ABOUT NEW ORAL MED/OR SURGERY???

butter999
Posts: 13
Joined: Feb 2012

IT IS ALL OVER LUNGS, LIVER, BRAIN, BONE, NODES.
YET I HAVE FEW IF ANY OF THE SYMPTOMS
LITTLE ACHE IN THIGH.
WHAT DOES ANYONE KNOW ABOUT NEW ORAL MED/OR SURGERY???

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

I think most on this board are dealing with papillary, follicular or hurthle cell variants. I would highly recommend you check out two support groups dedicated to medullary because those folks will have done the research and are seeing the specialists most familiar with medullary.

Thyca.org recommends these:
To join to the Medullary Information Exchange Group, visit http://groups.yahoo.com/group/medullary/join.

To join to the MTCSupport Emotional Support Group, visit http://groups.yahoo.com/group/MTCSupport/join.

I wish I could be of more help. Very best to you.
eileen

sunnyaz
Posts: 582
Joined: Oct 2010

I just wanted to tell you that I am sorry to hear about your diagnosis. I know this is a lot to swallow. I would find the best doctor in the country and go there. You will need surgery or surgeries and then continued treatment such as RAI and/or Chemotherapy. I am not sure what they will do first but I suspect remove the source of the problem, your Thyroid along with any large tumors.

I am with the Arizona Cancer Center in Tucson Arizona. My Oncologist is specialized in Endocrine Cancers and he is a surgeon. He performs his surgeries at University Medical Center (where Congresswoman Gabriel Giffords was taken after the mass shooting here last year). I trust my doctor and UMC with my life. They are outstanding! If you are interested in Googling him, his name is Dr. Marlon Guerrero. I don't know where you live but if you are anywhere in the western part of the country, Dr. Guerrero might be worth your trip.

Keeping you in my thoughts and prayers,
Julie-SunnyAZ

butter999
Posts: 13
Joined: Feb 2012

It is medullary that has spread to bone, organs and brain.

butter999
Posts: 13
Joined: Feb 2012

It is medullary that has spread to bone, organs and brain.

butter999
Posts: 13
Joined: Feb 2012

It is medullary that has spread to bone, organs and brain.

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

I am not sure I can provide you with a list of names, necessarily. Can depend on where you live, your insurance, etc. What I would say is you might find it helpful to contact some of the key institutions conducting research on thyroid cancer as a place to start. The ones I am aware of are mainly on the east coast, and Mayo Clinic in MN. East coast places of note include Memorial Sloan Kettering in NY, Johns Hopkins in MD and Univ of Pennsylvania in Philadelphia. Oh, also MD Anderson in Houston. I have had consults with Dr. Sherman at MD Anderson, various docs at Mayo (endos, radiation and medical oncologists) and also Dr Marcia Brose at UPenn.

I am sorry I am not familiar with NCA...but I would imagine that surgery to remove the thyroid would still be a first step for you. It is true that mets to bone and lungs cannot be dealt with surgically. Some bone mets can be treated with external beam radiation and/or chemotherapy. Same with lung mets, though radiation is less common. Sometimes radioactive iodine can help to treat mets in lungs, but in some patients, such as myself, cells become less receptive to iodine and that treatment option no longer works.

My experience has been that many cancer centers and hospitals are willing to review records before seeing you - you can call their patient services lines and ask about this. I did that with Mayo and a few others - sent records and films on discs and asked a few questions. They then responded to several questions but really need to meet with you in person for a full evaluation. That initial review did help me though. If your insurance allows it, many places will let you make your own referral.
hope that helps
eileen

butter999
Posts: 13
Joined: Feb 2012

Since my cancer is inoperable at this time, I went through
10 rounds of targeted brain radiation and 10 rounds of bone and organ
radiation.
Everthing was very specific and I must say I have less Pain.
Today I took my first oral chemo pill capresella???

Although,I have a borderline QT interval,438, I will be closely
monitored.
I once found someone mention a substance to use if you get a
side effect of blisters and am wondering if any knows what
it is starts with a c I think.
I would like to get advice from anyone who has been on this new
oral chemo.

butter999
Posts: 13
Joined: Feb 2012

Since my cancer is inoperable at this time, I went through
10 rounds of targeted brain radiation and 10 rounds of bone and organ
radiation.
Everthing was very specific and I must say I have less Pain.
Today I took my first oral chemo pill capresella???

Although,I have a borderline QT interval,438, I will be closely
monitored.
I once found someone mention a substance to use if you get a
side effect of blisters and am wondering if any knows what
it is starts with a c I think.
I would like to get advice from anyone who has been on this new
oral chemo.

mahendrah
Posts: 1
Joined: Jun 2011

With choicest Blesings for a successful treatement and recovery.
We are all in the same boat. Just take it one at a time. See a
Good Experianced Endo and Onco and move from there.
You will get over it, one at a time.
My Auntie who had Breast Cancer which metazized to all part of
her organs in the year 1980 survived until 2012. That is a period of
32 years from the date of her diagnosis. Who can explain this?
Life is in the hands of GOD, and no one can predict death. So do not
worry, let what may come, be confident, go on with the treatment,
and you will get over it with the help of the Almighty and live
many-many more years to witness all your wishes will come true.

Rapier67
Posts: 1
Joined: Apr 2012

I too was recently diagnosed with Medullary Thyroid Cancer. One thing that I can tell you is that it is a lot to swallow. Mine is stage 3, primarily within the neck area; however, they are watching a small node on my lung, which may either turn out to be cancerous or absolutely nothing to worry about. That is a wait and see game.

Right now, I have had three surgeries in three months and am about to begin external radiation therapy in the next couple of weeks. What surprises me is how much your life changes on a dime. I am a recently divorced, single mother of a five-year old; and up to this point, considered myself a very healthy vibrant woman. Now my life surrounds doctor's appointments, surgeries, calcitonin levels, tests, tests, and more tests.

Although this is still pretty new to me (diagnosed in January), there are some things that I have learned on this roller coaster ride. First of all, stay positive. Attitude encompasses so much of what we are going through. I am grateful and thankful that I am not in pain, and although my neck looks like the Bride of Frankenstein, the rest of me still works pretty well. Secondly, surround yourself with positive people. I have one friend in particular, whose primary job is to keep reminding me of the optamistic viewpoint, even when the news looks bad. Thirdly, find the best doctors you can. I have a team of physicians and health care professionals (surgeon, endocrinologist, radiology oncologist, counselor, and nutritionist) that are true angels. They do not hesitate to check on me and keep me informed of any new detail that arises.

I know that the battle is long and hard. It certainly doesn't help that this disease is so rare. But I have to believe that regardless of the diagnosis, staging, or prognosis statistics; we can get through this.

butter999
Posts: 13
Joined: Feb 2012

I am now on Caprelsa.So far so good.
Yesterday I got two beautiful wigs and feel positive.
After my brain radiation I was very tired for three weeks.
But I have a lot more energy and a positive outlook.

mhc4165
Posts: 46
Joined: Dec 2008

I  *really* hope that butter999 recovered and didn't die! She hasn't posted for a year now.Cry

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