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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 - 11 (11 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 9/2004, IDC, 1cm, Stage IIIa, Grade 2, 4/14 nodes, ER+/PR+, HER2-Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, 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 9/2004, IDC, 1cm, Stage IIIa, Grade 2, 4/14 nodes, ER+/PR+, HER2-Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, 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 9/2004, IDC, 1cm, Stage IIIa, Grade 2, 4/14 nodes, ER+/PR+, HER2-Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, 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.