Mets to neck

[Nancy L]

Has anyone else had their breast cancer metastasize to the neck---no other place shows active disease? I have been on Herceptin for over four years and now am on both Herceptin and Tykerb. But I am most interested in comparing notes with anyone who has had their breast cancer reoccurence happen in the neck. It was on the opposite site of my breast cancer and the tumor paralyzed my vocal cord. Thanks

[jml]

Check out Sheila's post: "Verdict is: Good Bad and Ugly"
on the main message board.
It sounds like she's experiencing the same complication.
Hopefullly the two of you can commiserate & guide each other through your similar situation.

Keep the Faith~

[DianneS]

Hi Nancy L,

May I ask if you began your treatment with Herceptin when you were first diagnosed? How many tx's of Herceptin did you have?

Also, I am curious to know what type of chemo you received, and whether you had a lumpectomy or mastectomy or neither?

Diannes

[Nancy L]

Sorry I didn't reply earlier. Your e-mail ended up in my spam folder which I was just reviewing today. Best of luck with your treatment program and let me know if you have any additional questions.

Nancy L

Here is a summary of my journey so far:

Age 57 at diagnosis---Nothing has happened per the book for me.

11/03 Annual mammo normal. Had mammos every yr age 40+..
9/04 Left Nipple Inverted--DX/High Grade BC-Stage IIIC 7x5x3cm tumor; 11 of 11 tested lymph nodes positive for metastatic ca with extranodal spread. ER/PR- Her2neu positive by FISH (HER217Z1ratio of 4.03).
10/04-4/05 Dose Dense---4 AC; 4 Taxotere/Herceptin; 35 rounds of radiation.

5/05-2/09 Herceptin every 3 wks; My hair never grew back---told this is rare and caused by Taxol drugs. After much mourning, selected hair replacement system (VirtualReality.com)—expensive but I have better hair than before ca.

7/08 Lost voice—DX paralyzed rt vocal cord. -. It took 7 mo for modern medicine to find the root cause. None of my doctors suspected malignancy because my BC was on the left side/paralyzed vocal cord was on the right side, and my tumor markers never changed. (Told rare place for breast cancer to reoccur and my tumor doesn’t produce the proteins measured by tumor markers---these markers don’t work for everyone---new news to me; all these years I have had a false sense of security).

2/09 Enlarged Neck lymph node finally detected on CT/PET. Surgery to remove tissue done to confirm tumor characteristics. Breast cancer metastatis was finally diagnosed at UCLA. Neck tumor was ER/PR -; Her2neu highly positive by Fish (her217Z1 ratio of 20.2).

3/10 Continuing Herceptin. Prescribed 4 Tykerb daily. After 6 days, massive hives all over body. Tykerb reduced to 3 tablets daily. So far so good. Will get cat/pet soon since tumor markers don’t work for me.

[Sheila]

Nancy
We will be the official Neck Node /Vocal Cord Paralysis Gals here!!!!

[DianneS]

Thank you Nancy, for your response. I'm glad you're having a good response from the Herceptin/Tykerb. Have you had a CT/PET scan yet? Looks like Sheila is in the same club. You guys are tough!

Sheila, was wondering why they did not put you on Herceptin right off the bat?

I take off my hat to you two who have been on Herceptin for such a long time, and here I am complaining about being on it since November.

Has either Herceptin or Tykerb shrunk the nodes at all? How has your MUGA or echocardiograms been? I guess that's what worries me the most is heart function loss, but I have heard that it comes back when Herceptin is stopped.

Anyway, I salute you girls. This is not a club any of us want to be in and you are both so inspiring.

Diannes

[Nancy L]

I guess I have to be blunt and say that taking Herceptin for one year would be the least of my worries if I were in your shoes. Having Her2 positive breast cancer is nothing to play around with---it is one of the worst types of breast cancers. I know women who are stage IV, have taken Herceptin for over ten years and it is still working----for the women it protects, there is nothing like it. I don't think you could get a better insurance policy and I encourage you to embrace it. Of course, I must say I never had any disabling side effects and I have taken it for 4 1/2 years living life pretty much to the fullest. My mugas have been within the normal range. The risk of heart problems is really very very low compared with the benefits of this drug. I only wish that my tumor had not become Herceptin resistant. It is not enough of a barrier any more so that is why Dr. Slamon added Tykerb. Tykerb is not an easy drug to take but easier than chemo. I will find out early in June if the combo is working. My gut tells me it isn't so then it will be something else. Women like Sheila and I are trying to stay one step ahead of the next great discovery for HER2. Just this week data demonstrate that MUC1* (transmembrane cleavage product of MUC1) is a novel determinant of Herceptin resistance in breast cancer. Therefore, MUC1* disabling agents may have the potential to overcome Herceptin resistance, both intrinsic and acquired----very exciting.

I feel very sad for the women I read about on this site who were diagnosed HER2 positive, didn't receive herceptin and now their BC returned in a year or so. When it comes back, it is always Stage IV and it can't be cured---only treated. Trust me--you do not want this to happen. Do everything you can do now to minimize your risk.

If you haven't seen the movie "Living Proof", I encourage you to rent or purchase it and prepare to be inspired. It is about Herceptin and the determined researchers/fund raisers who brought it to us. I always thought Genentech was responsible---no they wanted to give up on it. Thank god for men like Dr. Slamon.

Your year will go quickly and then you hopefully can put this all behind you forever.

Have a nice weekend.

[Sheila]

Dianne
Back when I was diagnosed, i was early stage, small tumor and negative nodes. Herceptin was not available then to early stage...only metastatic..or Stage IV....so I had a recurrence, then deemed stage IV, was able to get it 1 1/2 years later.....I often wonder \if I would have recurred if I had gotten the Herceptin from the start...I will never know. So now, i have been on it for 5 1/2 years with no problems...along with various chemos.....embrace this drug, it has been a miracle and a lifeline for us Stage IV gals.....and many newly diagnosed...you are so lucky to get this early as part of your treatment! It is the best insurance you can get right now to stay cancer free! You are blessed to be diagnosed at this time, instead of when I was!!!

[Ellie F]

Hi Nancy
Have just read your post. Hope this isn't a silly question but how did you manage to get herceptin for over 3 years when you were not stage 4 at that time or have I read it wrong??
I am really interested in resistence to herceptin and why this occurs. What I am also unclear about is why adding a chemo drug like taxotere, for example, is thought to reactivate it's action?
Would be grateful for any info having just embarked on TH and hoping it will work
Thanks Ellie

[yankeebikachic]

I had H for a year from '07 to '08 and had it come back to my nodes anyway.
No sense beating yourself up that you didn't get it right from the start. I wish the H worked for me, but it does appear to work better for some and not others.

[yankeebikachic]

Maybe because it was diagnosed originally as 'extranodal spread'. Re-read her post of her journey so far. I thought anything beyond the breast and nearby underarm nodes is classified as stage IV. I had it come back in my collarbone nodes so my Dr's refer to mine as stage IV.

[Jackie07]

Thanks, Nancy and Sheila, for being such great role models for us Her2 BC fighters.

When I found out about the recurrence 4 years after my first diagnosis - it was always there, the medical staff just overlooked it, always called it scar tissue - I was mortified and started to write my farewell letter to my family overseas while in the waiting room. Hubby went and got another oncologist (mine was out of state attending a conference in Chicago) who assured me that it is called a 'local regional recurrence' and not a stage IV as I had believed.

When I was checking with Joe about my disability application, he also thought I was Stage IV and should automatically qualify. But my lawyer has actually been using my brain tumor surgeries as the basis for my claim. Lately I've been having irritable bowel problems - had a CT scan again just last Friday. I think legally only when there's involvement beyond the region will the recurrence be considered a stage IV.

For Her2 +++ patient, 'Local regional recurrence' probably doesn't make much difference since most likely there would be recurrence in other areas as well - just hasn't been detected yet. When mine was first diagnosed, it was super fast-growing. I wouldn't be surprised if the tumor cells had sneaked to other areas also.

Guess it's time to request for a PET scan... [Result of 5/20 Ultrasound shows 2+ cm Hemangioma plus a new 4mm spot in liver - I don't remember the 2+ cm deal, but the oncology nurse said according to the doctor it had been there all along. So I guess it was a relief.]

[Nancy L]

I believe all these combo protocols in second line treatment(taxotere/herceptin, etc.) are under clinical investigation for those of us who are resistant to herceptin alone. I have had some oncologists agree and some disagree with my decision to stay on Herceptin until what I told them "I die, it stops working or research comes up with something better". Because I had so much disease and was ER-/PR- with nothing else to protect me, I studied everything I could find and made this decision. Of course, I had to be prepared to pay for it myself if my insurance decided it was not allowed. After discussing my first four years of BC with Dr. Slamon last January, he said he doubted that Herceptin was protecting me much after the first year. I don't think even he really know for sure. The data for the two year Herceptin protocol has yet to be published. It takes so so long for the research to be put into action for all of us. And they don't know why some women become resistant and others do not. Of course, they don't know either what causes or fuels ER-/PR- breast cancer---researchers call it the most understudied type of breast cancer. I hope they come up with a blood test to monitor as women are taking Herceptin rather than wait for a shoe to drop. I am anxiously awaiting the news from ASCO Meeting the end of the month---maybe there will be something exciting for all of us.

[Jackie07]

Nancy,

Christine, our support group founder, was on Herceptin for 8 (?) years. There were several other long time members who have also been on Herceptin for many, many years. Check Flori, Sheila, and other's signature, you should find some good encouragement.

[Jackie07]

I am having an MRI next Tuesday. I requested it because of the scary 'Vertigo' that lasted whole night 10 days ago. My left shoulder pain does not scare me since I know my brain tumor is the slow growing type and the pain I had felt was the exact same spot I had felt after my brain surgery in 1990 - so it's like an old wound. But my right shoulder pain got my attention because the breast cancer was on the right side and I am feeling some tight 'spot' below my ear.

Question: Would the (brain) MRI be capable of detecting neck nodes? How are neck mets found?

[Nancy L]

I do not believe a brain MRI would be capable of detecting neck nodes. As far as I can tell, Sheila and I are the only ladies on this site who have neck mets--I am told it is rare. The first symptom I had was I woke up and couldn't talk. An ENT determined my right vocal cord was paralyzed. But he was adamant that it was not caused by my breast--boy was he wrong. The node could never be felt on physical exam but was finally detected on Pet/CAT after about 6 months. I have never felt any pain in either on my shoulders. I always thought breast cancer only traveled to certain places--like lung, liver and brain. What I now know is that these are the most common locations but in reality it can go anyplace.

I hope your MRI shows nothing. As cancer patients we sometimes forget we get everything everyone else gets. You may just be experiencing tension which would be certainly understandable. Please let us know.

[Jackie07]

Thank you, I certainly will.

[margiermc]

Hi, I had DCIS, then st. 4 to the liver.
bloodwork and scans normal and on
vaccination.

My left front neck close to my adams apple
has been getting a strange dull pain come
and go, dr's did physical exam, nothing,
I will see family dr. tomorrow, saw your site
about this and now concerned.

margie

[Nancy L]

Just as an FYI---I never felt any lumps or any pain in my neck. If I didn't lose my voice, I would have never known anything was going on. So perhaps you just have one of the bugs going around. As my doc always says, even though you have breast cancer you will continue to get everything else everybody else gets. But I do think it is important to be knowledgeable about all the places breast cancer can spread. I had no idea it ever went to neck nodes.

But if your pain doesn't go away, get another opinion. And since you have had breast cancer, at that point request an MRI.

Stay positive.

Nancy

[margiermc]

My dr. in Seattle said, the cervical neck lymph node is one of the concerned places of breast cancer - she checks me out all the time,
also, I get a pet scan end of November, tumor markers are all down, my dr. at home said, it would be elevated. But, nevertheless, I am seeing my family doc this week. My neice looked at my teeth and said, it looks like I have gum disease, as i bleed all the time - on and off pain could be a signal of teeth problem. I guess in the past year, getting a stage 4 illness, I did not care for my teeth. take care, margie