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Topic: Mets to lymph nodes in my neck

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Sep 15, 2009 04:24PM

Enjoyful wrote:

Hey everybody -

Just one month short of five years from my original Stage III diagnosis, I was diagnosed with mets to lymph nodes in my neck.  A CT scan with contrast of chest and abdomen and a bone scan show no disease elsewhere.  The onc has staged me at Stage IV because the lymph nodes involved were cervical rather than supraclavicular (evidently a different chain of nodes).

My onc presented my case at tumor board and there was some talk of more surgery to remove other affected lymph nodes and/or radiation to the area, but they decided that the side effects would outweight any possible benefit.  Besides, since I'm stage IV there's no hope anyway (not said in so many words, but that was the impression I got).

The suggested treatment is an oopherectomy and aromatase inhibitors.  That's it.  I'm only 46 and in good health otherwise, but I feel like they've given up by not suggesting a more aggressive treatment plan.

So now I have questions.  First, has anyone ever heard of mets only to lymph nodes in the neck?  Should my onc have ordered a PET scan?  If anyone has had mets only to lymph nodes, how was it treated?  Any other input?

E

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Posts 1 - 21 (21 total)

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Sep 16, 2009 08:27PM DianaT wrote:

Did they do a biopsy on the lymph nodes? When I was originally diagnosed, they saw lymph nodes in my neck light up during a PET/CT scan but when they did the biopsy it was all negative.  I had a sore throat the day of the PET scan so that is why it showed on the PET.

Diana
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Sep 16, 2009 09:31PM Enjoyful wrote:

Hi, Diana -

Thanks for replying!

They did biopsy the lymph node and it was positive for cancer.  I went to a different oncologist today who said we need to do a PET scan and a blood test (the circulating tumor cell test).  If those are clear, he thinks it's reasonable to be more aggressive (surgery, rads) with treatment.

E

BENGHAZI! Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, ER+/PR-, HER2- Dx 9/2004, IDC, 1cm, Stage IIIa, Grade 2, 4/14 nodes, ER+/PR+, HER2-
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Sep 16, 2009 11:53PM Stefanie wrote:

Hi Enjoyful,

after 4 years of Stage 1 diagnosis I am Stage IV with mets to a lymph node in my neck and my pleura. They did a biopsy and found the lymph node to be the original breastcancer. My treatment is as recommended for you. I had my ovaries removed and I am on Femara. It's been almost a year and my tumor markers decreased to normal range. I did have a pet at the time and the bloodwork. 

Good luck to you...

Dx 10/30/2008, Stage IV, mets, ER+/PR+, HER2+
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Sep 17, 2009 01:24AM Marsha56 wrote:

Enjoyed, I had mets to my neck nodes two times. No biobsy , no I guess I did have aneddle one. I di Xelodsa and Tykerb. Both work for two years each. The another met to the chest wall, know we have brain mets... But I wa told 13 years ago that I had at the most one year so  ne strong , hold on to your God and ask for HELP!! People need to help that's all they can do. May you find peace and strenght in your journey!

Marsha56 Dx 7/25/1996, IDC, 6cm+, Stage IV, Grade 3, 17/21 nodes, mets, ER+/PR+, HER2+
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Sep 17, 2009 08:03AM , edited Sep 30, 2009 03:14PM by camdenandmo

Hormonal treatment is not giving up.  I was diagnosed Stage IV last year at 33.  I was initially shocked and disappointed that my treatment was going to be one pill a day.  I felt like they weren't giving me a chance to 'fight.' I have since realized that is not the case.  Anti-hormonals are very effective and have kept many Stage IV women stable for many years.  Some even reach NED from hormonals. There are many positive stories on the Stage IV board that I believe will make you feel better about this treatment.  

In my case, I have been on Tamoxifen for a year.   I also had a zoladex injection until I had an ooph in May.  I initially had regression and have been stable since.  My markers are moving up now, but my scans are stable.  My doctor has said that when I have progression I will go to Femara.  I have had no real side effects in the last year.  I have felt great and I have been very active.  I am now so grateful that I am on hormonals, and I hope to be for a very long time.  

Stacie 

Dx 9/23/2008, IDC, Stage IV, mets, ER+/PR+, HER2+
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Sep 28, 2009 12:30AM Marsha56 wrote:

Stacie,

You hang in there! Have they talked about Tykerb or Herciptin??? Because of your HER2 staus? Sorry about the spelling I guess the radation is finally buzzing away at that again!

Hang on and PM if you need to vent!

Marsha56 Dx 7/25/1996, IDC, 6cm+, Stage IV, Grade 3, 17/21 nodes, mets, ER+/PR+, HER2+
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Sep 30, 2009 02:59PM SLH wrote:

Hi E,

I'm wondering about your cervical lymph node diagnosis.  Was it a very large node that made your doc suspicious?  I've had two swollen cervical lymph nodes for a year and a half on my bc side. My onc first said that mets were unlikely to travel there.  But he gave me a CT scan that showed the pea-sized lumps, and then said they weren't big enough to be concerned.  Let's see...my bc was 1cm (pea-sized) and that was "big enough" to be a concern!!

I hope you're doing well!

sally

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Sep 30, 2009 05:30PM Enjoyful wrote:

Hi, sally -

I am doing well, thanks!  I hope you are as well.

I think the node measured 1.5cm when they removed it.  It was different from other swollen lymph nodes I've had because it was harder and more prominent.  My onc said that it's not unusual to have it spread to the cervical lymph nodes.  What IS unusual about my case is that there's no evidence that it's spread anywhere else.

I understand your concern completely.  Did your onc say why he didn't want to do a biopsy on your lymph nodes? 

E

BENGHAZI! Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, ER+/PR-, HER2- Dx 9/2004, IDC, 1cm, Stage IIIa, Grade 2, 4/14 nodes, ER+/PR+, HER2-
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Sep 30, 2009 07:19PM SLH wrote:

My onc doesn't believe in being proactive about searching for mets.  He told me there's too many false negative spots that would be suspect if I were to have regular CTs or xrays. He said the treatment for mets, whether it's found early or when you have symptoms, is the same.  He has a very good reputation, but his attitude makes me a little nervous.

Did you have radiation therapy on your neck nodes?  I read a study that concluded it was effective, whatever the primary cancer was.

sally

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Sep 30, 2009 07:52PM Enjoyful wrote:

Hey Sally -

My oncologist wasn't very proactive either.  I'm really not comfortable with that and since the new diagnosis I've found a more proactive, aggressive oncologist. 

I haven't started treatment yet since we haven't settled on a treatment plan.  I think radiation is in my future, though.  Thanks for the information regarding its effectiveness - that's great to hear!

Good luck, Sally!

E

BENGHAZI! Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, ER+/PR-, HER2- Dx 9/2004, IDC, 1cm, Stage IIIa, Grade 2, 4/14 nodes, ER+/PR+, HER2-
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Jan 17, 2010 09:56PM nalianton wrote:

how & what treatment have you had for nodes.  I was just dx with supraclavicular lymph node ca & am trying to find out best way to go   Already had lumpectomy in 05 w sentinal node biopsy that found ca in 3 of 5 nodes, then ano recurrence in 08, had masectomy & now this.  Am considered at stage 4, cant afford any mistakes. 

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May 24, 2014 06:44AM Ariella wrote:

I was diagnosed with Stage 1 Pure Mucinous Carcinoma Breast Cancer in 2008 the tumor was 1 centimeter.  Five years and 8 months later I have a mass on my neck.  My doctor said it is a recurrence.  Is there anyone who is willing to communicate with me?  I do not like going to sleep because when I wake up I get more devastating news.

Dx 7/2008, Stage I, Grade 1, 0/0 nodes, ER+, HER2-
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May 24, 2014 09:11AM bevin wrote:

Hi Ariella, what a beautiful name you have. I'm so sorry that you are facing this  again and while I can't offer any input I wanted to give you my support. I know others will be along soon who have faced a similar situation and they'll be able to share their experiences.  One thought, if you're having trouble sleeping or with anxiety, don't be afraid to ask your doctors for a prescription to help. Sleep is important. Has the doctor explained what your next steps are?

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 8/8/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 08/10/2010 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right) Radiation Therapy 10/10/2010 External
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May 25, 2014 10:21AM Ariella wrote:

Hi Bevin,

  Yes, the doctor has explained my next steps.  Thanks for acknowledging me and replying.

Dx 7/2008, Stage I, Grade 1, 0/0 nodes, ER+, HER2-
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May 25, 2014 10:30AM Sunshineinky wrote:

Hi Ariella! I was diagnosed with pure mucinous stage 1 grade 1 in March.  There's a group where there are many very knowledgable ladies with mucinous BC on the forum.  Just search Mucinous BC and pose this question there as well.  Sorry to hear of your reoccurance! 

Age 44 at diagnosis IDC Type-Pure Mucinous Carcinoma ~Oncotype 12~ Dx 3/27/2014, IDC, 1cm, Stage Ia, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 04/14/2014 Lumpectomy (Right) Radiation Therapy 05/20/2014 External Hormonal Therapy 05/20/2014 Tamoxifen
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Jun 12, 2014 01:26AM susan3 wrote:

don't know where all you are in treatment. Just found this thread. Mine came back 3 yrs ago all in Neck nodes. To many to count. Clavicle, and sub, all,around my scm muscles, and all around my jugular . I also became hormone refractory, so no hormone targeted treatment for me. The cancer uses it as food and it grows faster. Have it both sides and under both arms. Been on many chemos in 3 years, they don't last that long, about 4 months. But this last one, havalen , I have been on since December 13 th. We r doing the happy dance. In dec, it had traveled to lung, rib and spine. My last test a couple of weeks ago, only showed cancer in 1 node in my jaw area, but smaller this time than in dec.  and the se on this chemo are no big deal for me. So having said all that, I have been living the high life since December !

I haven't had radiation, cause it was explained to me that it would cause so much damage. I would need a feeding tube,and I wouldn't be able to talk. It sounds like, when we run out of chemo choices, radiation would be the only thing left to do. I would have to talk to my husband and daughter about that and come to a comfy decision for all us. Right now I would say I would decline rads. But when you r presented with it at the time, who knows what I would choose.  

But right now I am traveling, playing tennis, entertaining for friends, did a marathon and a half walk, and many more fun things...sooo we can get a break occasionally on a specific drug. And when that happens, we have to grab the gusto and live the good life.    I hope you all get to experience that during these difficult times.  Hugs

Hope you are all doing well :)

Susan

Live and love fully Dx 3/2001, IDC, Stage IV, Grade 3, 40/5 nodes, ER+/PR-, HER2- Surgery 03/11/2001 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Left) Chemotherapy 03/29/2002 Adriamycin, Doxil, Gemzar, Halaven, Taxol, Xeloda
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Aug 30, 2014 03:39AM BarbDenise64 wrote:

Hi everybody. I had original cancer in 2008 and am now being tested for

 recurrence. I am really scared. I haven't had any symptoms until recently when I got a swelling in the neck. Encouragement please! I keep worrying about the kids. I have a 10 year old and a 14 year old who has autism. BA 

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Aug 30, 2014 07:23AM bevin wrote:

Dear Barbdenise,I'm so glad your doctors are being careful and checking everything. praying it is all benign for you. I dont have eperience with a biopsy like that but know others who have will be along soon to give encouragement.

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 8/8/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 08/10/2010 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right) Radiation Therapy 10/10/2010 External
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Aug 31, 2014 11:08PM Denny123 wrote:

I had a recurrence to the nodes behind my sternum and one in supraclavicular neck area.

Gemzar worked at first, then stopped.

Now I am on Kadcyla and my last Pet scan, after 5 tx, showed a marked decrease in size.  The supra node is no longer visible.

Sure hope it continues to work for me.

Denise

Dx 12/14/2002, IDC, 5cm, Stage IV, Grade 3, 4/40 nodes, mets, ER+/PR-, HER2+ Surgery 02/20/2003 Mastectomy (Both); Lymph Node Removal (Both); Reconstruction: Breast implants (permanent), Latissimus Dorsi flap (Both) Chemotherapy 04/01/2003 Adriamycin, Cytoxan, Gemzar, Taxotere Radiation Therapy 10/10/2003 External Targeted Therapy 01/23/2004 Herceptin Hormonal Therapy 07/05/2011 Faslodex
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Nov 4, 2014 01:43PM , edited Nov 4, 2014 02:16PM by Moderators

This Post was deleted by Moderators.
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Nov 5, 2014 02:28AM yangtan wrote:

The mets to a node on my neck is gone. Accoding to the last pet scan, there is no evidence of disease. I was on navelbine and flourourcil 5 for four cycles. That is so great. The not so great part is that I have to continue for another few cycles of chemo. Blah but thankful that NED.

Dx 8/2009, IDC, 5cm, Stage IV, Grade 2, 12/12 nodes, ER+/PR-, HER2- Hormonal Therapy 05/01/2009 Tamoxifen Surgery 08/21/2009 Mastectomy (Right) Chemotherapy 08/28/2009 Adriamycin, Cytoxan, Taxol Chemotherapy 08/08/2014 fluorouracil, Navelbine