Thyroid lesion

[Kaye301]

First, I want to commend Joe on the revision of this website. It really looks nice and I can now get here easily from my MAC.
I was dx'd with 3 types of aggressive b.c. in 3/01 (pleomorphic invasice lobular, rare presentation of inflammatory b.c., and high grade dcis with extensive comedo necrosis--9 of 12 positive nodes (none were matted but first CT scan report said there appeared to be remaining enlarged lymph nodes matted together), extensive lymphovascular invasion, extracapsular spread, ER+, Her 2+ (+3). This was 9 mos. after supposed normal mammogram; within day or so after that mammo I felt hardened area in my upper chest--showed it to my ob-gyn who dismissed it by reminding me that mammo was normal. 9 mos later--in wee morning hours of 50th b'day, I woke to burning pain in that breast. 2 days later it ached. 10 days later the nipple began changing daily--began sinking into aereola. I had a bilateral mastectomy, chemo (4 AC), radiation (5 weeks), more chemo (2 Taxol and 2 Taxotere along with a year of weekly Herceptin). I started Arimidex 2 mos. after last Herceptin. 2 mos. later I had 3 unexplained attacks of acute pancreatitis--each 13 days apart. My cholesterol levels went above normal--probably from the Arimidex. 1 week after last pancreatitis attack, blood levels were normal. 5 weeks later I became very tired, blood levels were off--with elevated ast and CEA above normal. I was dx'd as hypothyroid. At same time I had burning pelvic pain. My testosterone levels were double normal (and one test--which may have been lab error--said 6 times normal).
I started thyroid medication--levels returned to normal and had complete hysterectomy and Salpingo--oopherectomy one week after last Herceptin. 3 mos. after last Herceptin my alkaline phosphatase level made its highest jump--20 pts and was few pts below normal. I had started prophylactic Doxycycline and Celebrex and had first prophylactic Zometa infusion. Alk phos. levels stabilized and slowly returned to level at time of dx--less than half of highest level.
I had a bunch of other stuff going on--increased lower leg swelling (right leg), sudden onset of sciatic pain--cyst or mass in lumbar spine. Then I had severe shoulder pain in non-malignant side--MRI described 'thickenings' and several dr's felt enlarged nodes but never tested. I started a statin drug (to help w/high cholesterol), doubled Celebrex to maximum safe anti-tumor level--800 mg/day, and started walking training--60 mile, Susan G. Komen 3 day walk. I felt much better and leg swelling decreased. There were things going on w/spine and scans but too complicated to write about all in one post. However, I have had enlarged retroperitoneal nodes since dx. which I believe have increased.
In November I felt something weird on my back. Husband and daughter in med school thought it was a skin tag. A few weeks later--showed my husband again--he thought it had grown. I saw my dermatologist who was 100%, then said 99% sure it was benign. He was also following chest rash that keeps coming and going. I received results a few days later--basal cell carcinoma. The dermatologist who is quite experienced said he had never seen one like that.
The following week I had a full body CT scan--done privately--by dr. who knows about lobular b.c. He found tumor in submandibular area. That has shown up on PET for past 2 yrs but nobody was concerned. In addition there was a lesion on my thyroid and also a multitude of enlarged retroperitoneal nodes (30 to 40) along with enlarged mediastinal node and enlarged aortocaval node(s). I had had enlarged retroperitoneal nodes from start but CT scan report from 2 weeks before had not mentioned any nodes so thought they had improved--WRONG!
Last week I saw my endocrinologist and had thyroid ultrasound as recommended by dr. who did full body CT. She did it on basis of what I shared and my hx. She had equipment to do it in office and then she went ahead and did a FNA biopsy. I am waiting for results.
This weekend I read some things about thyroid cancer that have me concerned. I had thought it was an easy cancer to treat and cure. It is for those under 50.
I also read that if one has had radiation to that area that a FNA should not be done. Also, it talked about a 2ndary thyroid cancer not being uncommon--but that generally happens after 10 years--I had radiation a little over 3 years ago.
My question--can thyroid or other cancers be HER2+?

[Lyn]

I know what you are saying, do you have numbness in the area of your ear and down your neck? I was pushing for answer to lump on my neck, opposite side of surgery, already been through all the treatments before since 1998 chasing nodes and getting rid of them with radiation and chemo but this one was stubborn, tests said thyroid was enlarged and dismissed that it was anything else, treated me for thyroid over active at first and week later under active I ended up in hospital with heart failure from treatment of thyroid, escaped meeting my maker again but once thyroid was stable lump was still there, more tests and scans and found lump deep in the neck but biopsied under the original lump you could see and feel and found to be positive so treated with more radiation it went but lump on surface still there so I demanded an MRI and sure enough it was and when biopsied it was positive and got bigger for having the biopsy, I had no neck on that side in the end, so started on Herceptin/Carbo which stabilised the lump and stalled so added Taxol for 6 months weekly dose and that shifted it so it seems if you can believe my latest MRI and scans and bloods which say I am NED, I still have a thickening which isn't quited explained, I still have numbness on that side as well as in my feet and fingertips so could also be neuropothy and fibrosis but I will not be happy until I have my next MRI, I only just read the first report of MRI done prior to treatment and it mentioned the involvement of the Paratoid and Submandular glands which explains the numbness in that area but no mention of the big C in these glands but they were not biopsied and latest MRI doesn't mention anymore about them, so don't know one way or the other, as for the Thyroid still slightly enlarged but functioning normal. I am now having physio on my neck because of all the treatment that side of my neck is rock hard and effecting the use of my right arm. It is getting a bit softer but early days yet and I was warned that I could experience nerve damage from radiation that would effect this area but at the time I just wanted it treated and didn't worry about the big picture, either way it had to be treated or give up. My original diagnoses was somewhat similar to yours, I had a mammo in the April and by July I was under the knife for a radical masectomy which had spread to 16 lymph glands with no clear margin, the lump had tripled in size in a week to the size of an orange and was also invasive, a very aggressive fast moving ugly BC and poor prognosis of 2-3 years, well that was 1998 and staying ahead of it has kept it just in the glands and skin mets, I am having another mammo tomorrow on right breast because it looks weird, it has been weird for a while but weirder now so I am slightly worried because there is no rhyme or reason to this evil. I also researched Thyroid, Paratoid and all the other glands in that area but feel a lot of mine maybe swelling and hardness as a result of nerve damage from the inflammation and radiation but then again I have had that much chemo I don't really know, all I know is it is settling. The lump that was biopsied as positive had similar cancer cells as the original site but not the same so maybe a different strain or the Herceptin has altered them, and thankfully this one has been a slow mover because it took 12 months to finally diagnose and another 6 months to shift. The biopsy on my skin mets determined my HER2 status as 3+, Herceptin was not an option when I had my original BC, So I will keep you informed.

Love & Hugs Lyn

[Pat in MA]

Kaye,

I am 39 years old and currenty undergoing chemo for bc ER+ PR+ and HER2+++. I just finished AC and am on Taxol now. Only one node was affected and my oncologist did not want to pursue Herceptin right now.

I had thyroid cancer in 1999. I had my thyroid removed and received Radioactive iodine which is the method to treat the errant cells throughout your body and I received over 300millicuries to treat it (I believe it caused my bc). Overall thryroid cancer is a very slow growing cancer and many people die of natural causes and then thyroid cancer is found in their autopsies. People have it for many years and sometimes it poses symptoms and other times it doesn't.

As for your question about thyroid cancer and Her2...I am not sure. Her2 is present in many other cancers but I never thought to ask this of my endo. When I was diagnosed with thyroid cancer they didn't even have the test for Her2. I will try sending my endo an email this week and let you know what he says.

Stay strong -
Pat

[Kaye301]

--Lyn, did they test the submandibular gland(s) to see if they were malignant? You said that they showed up on an MRI--what was the MRI--or what type of MRI did you have? Was it a brain MRI or what specific area(s) were being imaged?
I am guessing from your response that although your thyroid is/was enlarged that it has not been biopsied and that you don't know whether or not it is malignant???


--Pat, I look forward (I think) to hearing what your dr. says about whether or not the thyroid can be positive for her2+ What kind of medication must you take after having your thyroid removed? What happens if you forget to take it? I guess I am a bit paranoid of the thoughtof needing to take some type of medication everyday and then being away and losing it--or not being able to get it from the pharmacy when I need it (i.e. they ran out)...

[Lyn]

Hi Kaye, there was no mention of which gland just an enlarged one deep in the neck first, it showed up on the CT and I didn't even know about that one, the last one didn't show up at all. The first one was treated with radiation. The MRI was the same as the Brain one because I hadn't had one on that area so I insisted on head and neck both sides MRI and sure enough it was and it was on the surface, thick and hard and no others in the result, but yep it was, so had more radiation, carboplatin and then added Taxol, all the while still on Herceptin. I always thought mine may have been thyroid cancer but it was not biopsied. When the thyroid is removed thyroxine is prescribed, it accumulates in your body so it doesn't stop working if you forget to take a pill, you just need regular thyroid function test done on your blood work, my sister in laws have both had there's removed and I didn't even know for years so they manage quite well, they did not have cancer in them just didn't function properly, and a good excuse to retain weight. Feel free to ask anything else.

Love & Hugs Lyn

[Kaye]

Lyn, thanks for your response. I have a few questions. You said the submandibular tumor showed up on the CT. What type of CT was it? Was it the standard one done? If so--what does it say on the order or requisition. My CT orders say it is to be of the chest, abdomen, and pelvis. Does your say that or specify that more areas are to be covered? If not, should that area be imaged if the CT is of the chest, abdomen, and pelvis?

Also, you write that when your MRI was done that it was of the "head and neck both sides." I am not sure what you meant--was that a brain mri? What did you mean by both side? Did your oncologist order that?

[Lyn]

Hi Kaye, the MRI was an ordinary MRI of the head and neck which includes the Brain, both sides was left and right side of neck, and I told my onc that was what I wanted, I had a CT of chest and abdomen with contrast, all were clear this time except for question mark around skin surface which they cannot determine but now that I have come up with weird symptoms in my right breast I am not so sure, the lumps treated are on the right side also. I had mammo and ultra sound today and bottom line is to get a surgeon to determine result. I had biopsy and mammo ultra sound done only 6 months before but could be inflammatory breast cancer this time which wouldn't surprise me as the cells biopsied in the neck were similar but not the same. As for the muslce on the report it said proximal sterno-cleidomastoid muscle, the mass was approximately 2.5cm x 1.7cmin the axial dimension and has a cranio-caudal extend of approximately 3cm. then the last MRI says that there is essentially no residual enhancement of the site of the previously documented large mass involving the right sternomastoid muscle and a maller satellite nodule in the right paratid region. The right submandular salivary gland is minimally enlarged and demonstrates enhancement following contrast and most likely radiotherapy effect. Summary was there has been an overall signicicant improvement in appearance when compared with the pre tretment study, minimal residual enhancement is seen in areas as described. So now I have another whole new problem, hopefully the surgeon will be able to tell me it is nothing to worry about, but I am because this curse can change its' direction so quick. Hope this has made sense.

Love & Hugs Lyn