Neck Mets any one?

FloridaLady

I have been telling two different doctors (Fla and MDA Houston) since Sept06 that there is something going on in my neck. I saw my onc. last week after 2nd mast. and he pulled a 4/13/7 PET and guess what there is something in my neck. (not found) From what I have read this is very bad news. Only chemo no surgery. I have taken 7 chemo with very little response. Does anyone know anything about this area of mets?

Still living in hope.
FlaLady

fd411

My PET scan revealed mets in my neck nodes and other places. Is that the same thing?

Ferne

zarowny9

Hi,I have mets in my supraclavicular nodes[above collar bone]I was in a trial for taxotere/avastin/placebo starting in feb of 07 I did 4 rounds and had more nodes show up on the left side.Iam now on xeloda and will start avastin on friday.Flalady what chemo are you doing? As far as bad,no cancer is good but if its not in your organs or bones than that is good.We just need to find the right chemo for us.I would like to here more about the research you have done on this.Good luck and hope to here from you soon.

hangin on hopes ropes................Dawn

FloridaLady

Yes I think you have some what the same thing I have going. I will have a MRI 6/22 and see my doctor next week here in Florida. I also am being treated at MD Anderson Houston. I looking at a Phase I trial of a new drug called Kos-1584. (it doesn't have a real name yet.)

fd411

I'm still trying to figure out my treatment. I know chemo, but don't know which kind. I have a second opinion scheduled and have to have an MRI of my brain on 6/25. What will your MRI be focusing on?

FloridaLady

MRI of the top of my neck and collar bones. Do you have brain mets yet? or just checking? Brain mets scare me. I think of neck and think of what a short distance to brain. If I have neck mets or not I will going into the new drug trial. Why can't they just cut it out?
Here is a quick prayer for you for your MRI that it bring good new.

FlaLady

fd411

FlaLady,

You're being treated for a recurrence and they suspect mets to your neck?

They're just checking. I've been having headaches and nausea, and my rad onc told me to follow her finger with my eyes and I got all dizzy, so she just wants to rule it out.

I'm thinking positive thoughts for you and the MRI tomorrow.

Ferne

FloridaLady

I was diag. 11/25/5 with Stage IIIC and have not stop treatment since this date. I'm had it spread two weeks after rads to inflammatory. Than I found cancer in other breast two weeks later. Than we thought it went to collar bone...it wasn't in Nov 06. (three weeks ago) 6/1/7 2nd mast. and now two weeks later probably the neck. But what has been a blessing no other mets. This is very rare to carry active cancer for 18 mths without other mets. (both mast 27 nodes positive) I still work full time and have excellant health even if I am stage IV. I have sent doctor's crazy in two states. Hopefully I will make them rewrite the book on triple negative.

Let me know what you find out.

fd411

Wow, you have been through alot. And you're still working full time and your health is good. That's great! I hope to be able to keep working full time.

Please let us know how you make out with your MRI.

Ferne

Teresa44

During my treatment for stage 3, triple neg. bc, after finishing up all the chemo I also had 25 radiation treatments. I did have a mast. but I still got the rads on the breast cancer site and also up into my neck. They said that if the bc came back that it shows up a lot of the time in the supraclavicular nodes in the neck.

I will keep you in my prayers.

God Answers Prayers

Teresa44

FloridaLady

Good News! Well I hope...MRI only showed a swollen gland in my neck. They do not feel it is cancer. This clears me of measurable cancer for the first time since I had been diag. 18 mths ago. I hope to try a new drug trial in the next fews weeks. That is if my insurance approves it or my dr can get the drug company to give it to me free. I may have to go back to Houston for the drug trial or Mayo Jacksonville.

Living in Hope.
FlaLady

SoCalNancy

That is great news FlaLady! I hope that is all that's going on with me too. I have a lump in the front of my neck, I guess it's by the thyroid. My onc said very unlikely it's related to my breast cancer, and to see my primary care doc. I had an MRI yesterday and have an appt with an ENT doc next week. My primary doc said it's very round and smooth, which is inconsistent with cancer. I sure hope he's right. I guess there is no way not to worry, a lump is a lump! That's what started this nightmare a year ago and I feel like it's going on again! Has anyone had a lump in this area? It seems I always hear about the one's closer to the clavicle area.
Nancy

NaomiS

Nancy, I had a lump on the front of my neck about 5 months after I had a bilateral mastectomy. For lack of a better way to describe it, it was where the top of my throat met my neck. Not only could I feel it, other people could see it. I was sure it was cancer related. My nurse praticioner was stymied, and my BS referred me to an ENT. He diagnosed me with something called a thyroglossal duct cyst, and I had surgery the next week to remove it. It wasn't cancer related at all. Even though I had to have surgery, I was quite happy.
But until I knew for sure, I was a mess.
Let's hope you have something totally benign that doesn't require surgery .

Babyface

OMG Naomi where were you a few months ago. I had surgery in Dec. for the same thing and couldnt find anyone I knew who had had one. Really wierd in my case...it wasnt there before my treatment since I had an MRI on the same area, and a 2 years later there it was. Apparently these things are pretty rare in adults, since they are part of emryonic remants...somthing triggers them to grow apparently. Im betting on the chemo in my case.

MarilynInMiami

I had a suspicious area show up at the base of my tongue on pet/ct. they did an mri and didnt show anything. I have been followed by an ENT and says he will keep scoping my throat and following closely. He also found a cholesteatoma in my ear. This is a benign growth caused by repeated ear infections (my immune system never returned to normal since chemo 18 mo ago). I will need a mastoidectomy with ossicular reconstruction in august. Any one else have something like this?
My best to everyone and happy 4th of July!
Marilyn

NaomiS

Babyface, I thought I was the only weirdo adult with that. The surgical nurse looked at my chart, and said, "Oh, my 9 year old had that."

NancyLee13

OMG squared--I was thinking that I was the only person I'd ever heard of who had a thyroglossal ductless cyst. I always write that down on my former surgeries lines on the things I fill out and all the nurses go HUH??? I had it when I was in college 30 years ago and at that time I was really surprised to read in the reports that after they took it out they did a biopsy on it and told me it was benign. I'd never even given that a thought. Strange, but I'm kinda glad that there are other people out there who at least know what I'm talking about when I say that. NancyLee

SoCalNancy

I read about the thyroglossal ductless cyst, I don't think thats what I have. Mine is about an inch off center. I had an MRI done, and the finding was "non-specific" whatever that means! The mass is in the subcutaneous tissues. It was recommended that I have a biopsy after an ultrasound. Had ultrasound yesterday, and my appt with ENT doc is tomorrow. I'm worried, but trying to stay positive. I can't find anything on the internet relating to the area my mass is located in, I guess I'll just enjoy my July 4th and deal with this tomorrow!
Nancy

FloridaLady

I would like to add to my post...I know regular bc does rarely travels to the neck. But my bc turned to inflammatory after surgery and rads. Inflam. bc travel extensively through nodes system. It can go where it wants. I have spoken to other ladies with inflam. it has went to thyorid (spell), neck and even lips. So I am a little more aware of the neck because both of my mast. cancer was to the collar bones on both sides. Nodes positive 24/27. It is good other share there experiences with this area. I find it scarely because it is so close to the brain. Thank for you sharing.

Living in hope.
FlaLady

fd411

Flalady,

I had 6 positive nodes in my final pathology. I now believe that maybe if I had more chemo after my surgery and rads (I had neoadjuvent) it might have made a difference.

My neck now has a palpable lump in it on the opposite side of the bc, and my bc breast is exhibiting weird symptoms. I'm going for biopsies on Tuesday. Maybe the rash and bumps are an infection of some kind or possibly skin mets from my IDC. But my bc breast is doing freaky things that resemble IBC symptoms. The neck lump appeared out of nowhere (PET scan suggested mets were in the neck nodes, but onc couldn't feel them then) and breast changes popped up in the matter of a few weeks.

I did have a brain MRI and it was negative.

I'm very curious to see what the biopsies will reveal.

Ferne

FloridaLady

I so glad your brain MRI was clear. You know neck lump was on the other side from 1st surgery. My PET did show this area of concern also. But they are not following through with anything right now. I will continue to push for follow scans of this area. I just got back from MDA Houston for a look at available trials. Not much to offer me right now. I have no cancer that can be seen through any scans but we know it is out there because of my 2nd mast. 6/1/7. I now have serve nuropathy in hands and feet due to the trial I just did out there. (they gave me a very large amount of a new drug)I wish I had know this before had. Any way I hope you get your neck mystery resolved and it's something simple to correct.
\
Living in hope
FlaLady

mkl48

If you found the second breast cancer just a few weeks after the first why did it take until now to have the second mast and why are you classified stage 4 Beth

FloridaLady

NM46
My bc spread to inflammatory right after I found it in then other breast. They canceled 2nd mast. to treat inflam. for 4 mths. If your bc ever makes it to the skin you are now considerd stage IV. They know the 2nd bc move in my skin to the other side.