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Cancer in supraclavicular lymph nodes

kc123
kc123 Member Posts: 9
edited May 2018 in Stage III Breast Cancer

I'm a (to-be-determined) Stage IIIC newbie.  Diagnosed in June via biopsies but still waiting to see an oncologist to confirm staging, prognosis and treatment.   I've had several tests (left breast, 6 cm, cancer in left supraclavical nodes but no detectable metstases in body/head/bones, ER+,PR+,HER2+).   I've been told it is inoperable, but I am hoping that just means 'at this point.'  I am hoping that I will be able to have both breasts removed after chemo.   I had stage 1 BC on opposite breast in 2005, which, in comparison, was nothing.   I was (and still am) shocked to find myself with a Stage III cancer.   Thought I was doing everything 'right' (annual mammograms, self exams, anti-oxidant foods, paraben-free products, no plastic food containers...you name it, I adhered to it.   I am a Dr Oz devotee and follow his anti-cancer recommendations faithfully).   But due to some unfortunate oversights by my medical professionals, I was not biopsied until 10 months after I reported symptoms.   That is almost harder to accept that the diagnosis.   But it is what it is, and I know I need to focus on my health.   Question:   have any of you had cancer in the supraclavicular nodes?   Did chemo and/or radiation kill it, and were you able to have surgery afterwards?       

Comments

  • sarah1968uk
    sarah1968uk Member Posts: 327

     Yes, kc123, I have had this. Dx in Feb.2010. Had 24 weeks of taxol chemo., followed by 15 super-strong rads. Been NED since last Sept. Hurrah!!!  Actually, mine was a recurrance after primary BC in Dec.07, so, I believe, I am categorised in the US as Stage 4, but I think, stage 3c here in UK.  I believe that it is inoperable as well. Pm me if you need any info. or to chat about it.

     Sarah x

  • LindaLou53
    LindaLou53 Member Posts: 60

    Kc123 I am sorry you have to be here but you are in the right place for good information and support.  I understand the shock of having a second BC diagnosis, a new primary unrelated to the first.  My second BC in 2005 was Stage IIIC.  I opted for bilateral mastectomy due to my previous BC in the other breast in 2000.  My surgeon started with a Sentinel Node biopsy but ended up having to remove all the nodes she could find, including the Level III nodes which are up just below the clavicle.  All the nodes she removed were positive for cancer and several had already ruptured.  My PET/CT and MRI also showed no signs of cancer spread outside the local breast area.

    My onc had to presume though that my supraclavicular and internal mammary nodes were also positive so after having 6 months of chemo I had 3 field radiation for 7 weeks in which my chest wall, axilla and supraclavicular areas were radiated. Generally the supraclavicular nodes (above the collar bone) and internal mammary nodes (under the breast bone) are considered inoperable due to their physical location, not due to whether or not they contain cancer.  That is why chemo and special field radiation is used to hopefully clear any remaining areas of cancer spread.

    My breast tumor was 5.1 cm but I had the surgery first, then chemo and rads.  I would expect that since you are getting chemo first the plan will be to do surgery afterwards if there are still any signs of tumor left.  I am sure when radiation is discussed they will suggest specific radiation to the supraclavicular area also.

    I know it is hard to again face treatments and fear that the second time around may be more difficult than the first, but I hope to encourage you that it is still very doable and can be successfully treated.  The fact that your scans are clean is great news!  You will have full treatment options available to you including chemo, hormonals and Herceptin in addition to surgery and radiation. 

    Keep a list of all your questions for your onc and make sure they keep you fully informed of the plan of treatment. I'm sure others will come here to post their experience and encouragement also. Please keep us updated and know that we are supporting you in your journey!

  • kc123
    kc123 Member Posts: 9

    Thank you so much for your quick replies and information everyone!.   It is very encouraging to hear your stories and to know that you were able to have treatment that allowed for surgery.   It gives me hope, which is what I desperately need right now.   Much appreciated.   I will heed your advice.  I wish you all continued good health.   :)

  • Suze35
    Suze35 Member Posts: 559

    kc123 - my situation is a little different from yours, but I did end up with positive supraclavicular nodes.  I started with chemo, had my surgery, and the nodes popped up when starting radiation.

    I had them irradiated, and that really did the trick.  They did not show up on the last CT I had, and I can't feel them anymore.  I am now doing more chemo to see if we can stop this crap.

    Most have enough of a response to chemo so that surgery is possible.  The supra nodes, however, are generally considered inoperable, so they would not be removed regardless.  If chemo doesn't wipe out everything, radiation can be very good at mopping up.

  • kc123
    kc123 Member Posts: 9

    Thank you Suze35!

  • Clintonh
    Clintonh Member Posts: 2

    Wow your situation sounds exactly like my wife's situation. We are seeing the doctor tomorrow but if you have any suggestions like what you did or the doctors did to help you get through this we would appreciate them. Thanks for your time and best wishes

  • kc123
    kc123 Member Posts: 9

    First, I am very sorry that your wife has been diagnosed with cancer, and I wish her a full recovery. Although my cancer was initially deemed as inoperable, after I started chemotherapy, the cancer in the breast began to shrink, as did the node in my neck. By the time I finished chemo and radiation, I was able to have surgery, at which time, there was no trace of cancer. This was after an initial diagnosis of Stage 4 (in Canada, in the US, it would be Stage IIIC), with a one percent chance of survival. That was five years ago, and, knock-on-wood, I am fine. My cancer was estrogen, progesterone and HER2 positive. There was no sign cancer in any of my organs before, during or after treatment, so that was a huge plus on my side. However, I had had cancer in the opposite breast six years prior. My treatment plan was three rounds of a chemo cocktail called F.E.C: (5-Fluorouracil, Epirubicin, Cyclophosphamide)., followed by three rounds of a chemo drug called Docetaxel (Taxotere). I then had 25 sessions of radiation on the breast and clavical region, followed by a mastectomy. I realize that every case is different and everyone's response to treatment differs, but I firmly believe that having the treatment in the order I had it, particuarly having the chemo first, is the most effective in killing the cancer cells. I forgot to mention that I also had 18 rounds of Herceptin after I finished the chemo drugs because my cancer was HER2 positive. And, I take an anti estrogen pill every day called Letrozole. I hope this information is of some help to you both. My thoughts are with you.

  • Petrea
    Petrea Member Posts: 5

    Hi everyone,

    I'm from Australia and I was wanting to find out for sure if cancer in the supraclavicular lymph nodes and internal mammary nodes is in fact inoperable. My first breast cancer diagnosis was in 2005 stage IIB. Had chemo and radiation, hormone therapy and everything good until December 2016 when a lump appeared on my neck. Turns out it's secondary from the original cancer. They only have a small safe dose of radiation left they can give me so waiting to see if chemo works. First PET/CT scan showed cancer only in lymph nodes so they gave me 2 weeks Nab-Paclitaxel, this didn't shrink tumour and second PET scan showed up 2 new spots on sternum. I'm now on Xeloda but lump still feels as big.

    Tumour markers were around 38, and I believe normal is 1 to 24. They have just jumped up to 57. My oncologist wants me to go see another oncologist who specialises in hormone refractory breast cancer. I guess that's because I have gone from ER-positive, one PR-positive. Her2-neg to now be ER-negative, PR-positive, Her2-negative which is less common. He says this other oncologist has access to early stage trials than he does.

    Anyone else like me where secondary tumour has lost Estrogen receptor? I know we're all different and what chemo works for one won't work for another. I'm interested though if anyone has had real success with a particular chemo?

  • kc123
    kc123 Member Posts: 9

    Hi Petrea,

    So sorry to hear that you are going through a second diagnosis. One should be more than enough for anyone to endure. My case is different from yours, so I can offer no advice, I'm afraid. As noted above in my post of April 4, 2016, the cancer in my supraclavicular node was fortunately undetectable after my chemo and radiation treatment. Although I had mastectomy surgery after chemo and radiation, the neck node was not operated on. I hope that you find an effective treatment with the specialist oncologist. My prayers and thoughts are with you. - Karen

  • clariceak
    clariceak Member Posts: 12

    I was told the cancer in my internal mammary nodes was inoperable. I was given an extra radiation in that area.

    I'm sorry I don't have any advice about the change in receptor status. Wishing you the best.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,795

    I believe I might be right there with you. Found a lump last week. They did an ultrasound on Monday and found an indeterminate solid mass. But the make up on the ultrasound results screams recurrence.

    I have a biopsy on Monday to learn more but I’m already prepared for the worst

  • kc123
    kc123 Member Posts: 9

    Hi,

    I hope your biopsy is negative. You are in my thoughts and prayers.


  • shoofoolatte
    shoofoolatte Member Posts: 7

    I am right here with you too.

    A recent Pet Scan showed my right supraclavicular node lighting up. Biopsy confirmed that cells were "consistent with a breast primary". I will see the radiologist on Friday.

    I can feel the swelling in my neck, which is very weird.

    I am HER2+ and been metastatic since 2012 with mets to bones & 2013 brain mets. Herceptin & Kadcyla have kept me clean from neck down (I have recurring brain mets), so I was beginning to think that I wouldn't have any organ involvement. This showing up in the supraclavicular node feels rather ominous to me.

    Anyway, I'm curious as to how the radiation will go -- how long, how strong, side effects, etc. The only radiation I have had are 2 weeks to my right hip in 2012 and 4 gamma knife radation treatments to my brain (2013-2017).

  • kc123
    kc123 Member Posts: 9

    Hi Shoofoolatte,

    I don't recall having any major issues with the radiation on my supraclavicular area. No skin blisters. Burning, of course, but no worse than a moderate sunburn. I had a total of 5 weeks (25 sessions). That was six years ago. I do get a bit of stiffness in that area from time to time, but a little massage and light yoga stretching helps. And, of course, during radiation, applying a cream with aloe or vitamin E helps soothe the skin.

    My thoughts are with you.


  • fluffqueen01
    fluffqueen01 Member Posts: 1,795

    Here is my update...I went for the biopsy. Doc could not replicate the area. Kept looking and looking. Said he couldn't do a biopsy on something he couldn't see. Said I should have a CT scan with contrast, which they did that afternoon. They told me that I have an enlarged thyroid on one side, but not alarming. Then they did an ultrasound of just the thyroid. Just the same enlargement. They will watch it.

    Had an MRI last week to check an are of foci that they saw last year. That is all ok also, and they could see the bottom of the supraclavicular and the lump I felt, and still feel. All looked ok and they think the lump is just fatty tissue. So, I think I dodged a bullet, but still...I don't think I have recovered.

    I hope you are all doing well.

  • kc123
    kc123 Member Posts: 9

    Well, that is good news! But I understand your misgivings. You never feel 'safe' after having cancer, do you? It sounds like you've had thorough testing, though, and they found nothing concerning. That is good. Very good!

  • shanadacosta94
    shanadacosta94 Member Posts: 1

    hello @kc123

    My mom had stage IIIC she was diagnosed in Sep 2016. Right side, HER2+ and also a supraclavicular node. Less than a year later after finishing her treatment, she has recurrence in a supraclavicular node again :( I read about the prognosis of this type of cancer and it doesnt seem good. Can you tell me more about your story?

  • kc123
    kc123 Member Posts: 9

    Hi Shanadacosta94

    I am very sorry that your mother is facing this again, so soon after finishing her treatment. I hope that she can be successfully treated for this recurrence. Here's my story: In 2011, I was diagnosed with Stage 4 cancer in my left breast (in Canada, there are no sub-stages, but in the USA, I think it would have been Stage IIIC). The cancer was fully developed in the breast and had moved to a supraclavicular lymph node on my left side as well. Although my cancer was initially deemed as inoperable in 2011, after I started chemotherapy, the cancer in the breast began to shrink, as did the node in my neck. By the time I finished chemo and radiation, I was able to have surgery, at which time, there was no trace of cancer. This was after an initial diagnosis of a one percent chance of survival. That was seven years ago, and, hopefully, I am still okay. My cancer was estrogen, progesterone and HER2 positive. There was no sign cancer in any of my organs before, during or after treatment, so that was a huge plus on my side. However, I had had Stage 1 cancer in the opposite breast in 2005. My treatment plan in 2011/2012 was three rounds of a chemo cocktail called F.E.C: (5-Fluorouracil, Epirubicin, Cyclophosphamide), followed by three rounds of a chemo drug called Docetaxel (Taxotere). I then had 25 sessions of radiation on the breast and clavical region, followed by a double mastectomy, 18 rounds of Herceptin and a daily dosage of Letrozole for five years. I hope this information is of some help to you both. My thoughts are with you and your Mom.