Mets to lymph nodes in my neck
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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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.
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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
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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...
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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!
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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
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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!
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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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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
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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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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
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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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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.
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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?
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Hi Bevin,
Yes, the doctor has explained my next steps. Thanks for acknowledging me and replying.
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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!
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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
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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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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.
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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
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Hi! It´s my first time here. My mother had breast cancer and had liver metastases , bone and lungs now . She was in her doctor today and he prescribed the Halaven ( Eribulin ) . However this medication is not found in Brazil . I am going to the United States on Sunday, November 9th , you know how I can purchase it ? What documents do I need to bring? How much is that? I will be in Miami. Thanks for your help.
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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.
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Hi I am new to this... I am writing on behalf of my wife because my research online is not providing me with any answers to my question. But first i guess I should explain our situation. First off my wife found a lump in her breast and went to the doctor immediately. They did the routine stuff like mammogram, biopsy and it was not good news. Everyone was now in a big hurry they got her in for surgery within 2-3weeks. Everyone was positive because they believed they caught it early. The surgeon gave us a choice of a lumpectomy or a mastectomy. My wife decided to get the lumpectomy. After the surgery they told us that she would have to get a mastectomy because the surrounding tissue had cancer in it. That night she fainted in the bathroom at the hospital and accidentally grabbed onto the railing with her bad side and got a massive hematoma. They could not get her into surgery for another 3 weeks so my wife had to endure this.. it was brutal! During that waiting time she had a appointment with her oncologist and during the examination he found a lump in her neck under her clavicle bone, It was suspicious so he ordered a biopsy right away. It had to be surgical because of the close proximity to nerves and such. So back into the surgical room she went again... it came back positive for cancer. Everyone seemed to be stumped because her lymph nodes under her arm were negative for cancer, where the tumor drained to.....How did it get there? They said this is very rare that is it. She had her Mastectomy shortly after and then shortly after that went in again for her port in her neck. She has been through hell and it was just getting started. Her chemo seemed to be a struggle as well but not as bad as some stories i have read. During this they ordered a ct scan because of the suspicious metastic Lymph node and said everything came back normal. No metastasis anywhere except the lymph node under her clavicle. Good news i think. We finished the chemo, she is a trooper and are now in her second week of radiation.
Now finally the question i wanted to ask. My wife noticed 2 days ago the lymph node in her neck started to swell she could feel something off in that area. I felt it and there is a definite difference from the good side. Her oncologist examined the area after her chemo and said it was gone besides some thickening from the scar tissue so this new observation is scary. We have to wait until monday to talk to our radiation oncologist. Does anybody know if this is a symptom of radiation or lymphedema? Any help would be appreciated.
Also if anyone has a suggestion on a better place to post this as i am new , I would appreciate that as well.
Thanks for taking the time to read this. My heart goes out to all of you.
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I had a 3 in cervical lymphnode removed and it was diagnosed as a non teactive follicullar hyperplasia. They told me not to worry and it was nothing. 6 months later I went for a mammogram and in the end after surgery my cancer was and high grade 3 and large infiltrative Ductal carcinoma in breast. I had both Breasts removed. 4 lympnodes no cancer. MY case went to a panel and doctors said that my nodule in neck had nothing to do with my Breast cancer . Well after chemo and 36 rounds of radiation and 8 months into treatment , I finished I had a CAT scan My thyroid has a 4 mm nodule and my left lung upper love has 5 modules that are 4mm and 5 mm Too small for needle biopsy Will know more next week . I urge you to get after these doctors I was ignored I knew I had something wrong! Lidia
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Clintonh, It could be a lot of things, but imaging is definitely in order. Hopefully they order that soon. Keep us posted.
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I know this is no help but another viewpoint. I was diagnosed with breastcancer in January. Breast os completely clear. Lymph nodes in axillary, supraclavical and neck. Some doctors said mets my oncologist said not high enough on neck so stage 3. 6 weeks later I had breast MRI looking for source. Found acute appendix. CT scan to confirm showed liver mets. This didn't show in previous CT or PET scans. I am undergoing aggressive chemo. If you want to pursue chemo find another dr. Or research holistic approach. I am 49 with a 6 year old and a 10 year-old at home. Most says I feel good. 4 rounds of chemo show good response in 75% of area. Never give up.
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congratulations. ... awesome news
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Hi - this is my first post - will be two years clear in Oct but recently have found the lymph node at back of myneck is firm and enlarged. I have not been unwell and it is not painful. Not sure whether to mention it to my dr - have any Triple Negative BC girls had reoccurrences here ? I had grade 4 stage 3 invasive TNBC but 5 nodes removed & clear.
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Justine67, welcome to our community, and thanks for sharing. We naturally recommend to everyone that if you have a change that concerns you, you should certainly have your treatment team take a look. It will certainly ease your mind, if nothing else.
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hi there, hoping you get quick answers from you doctors. I don't have experience with this but wish you well. I know others will be by soon who can share their input. keep us posted.
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Any lymph node change should be checked out. Call your doc ASAP. Sorry you are dealing with this. Keep us posted. Hopefully it's just an infection, but not something to mess with
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