Supraclavicular Mets - Are you like me?

Options
2»

Comments

  • couragement
    couragement Member Posts: 114
    edited July 2018

    Hi Amica,

    It's just me checking in. How is it going up there? Do you have an appointment scheduled yet for a PET, or with an MO? I hope it is on the calendar. How is your body/neck/chest feeling? Are you feeling it more with the newer attention to this? That is always what happens to me. I have a girlfriend who is a doctor and she had triple negative bc 10 years ago with a recurrence to her supraclavicular nodes just last year and they did not consider it Stage IV. She did have to go through more treatment, but she is NED now. So there are good stories out there (like the beautifully strong Daczahow!).

    How is your energy? How are things with your dad? Are you able to keep up with what you need to do with taking care of him? I so hope so. My energy has dropped and so I have been laying low for a short little port removal surgery this Friday. Excited about that, but I have come to love my little port as she keeps them away from drawing blood from my feet (due to bilateral node removal and lymphadema :( ). So I am working toward getting comfy with blood drawn anywhere but my arms.

    Sending much love your way!

    · Share on FacebookShare on Twitter
  • Amica
    Amica Member Posts: 488
    edited July 2018

    Hi dear Couragement

    No, no appointment yet, and I am pissed off. I called the Cancer Center today, could not get the right clerk, and it sounded like my paperwork was screwed up. The clerk I did get said I might get an appointment in mid-August. MID -AUGUSt ?!!! wtf That's nearly 4 weeks away. I HOPE she was in error. Sometimes talking to these clerks is the worst thing because they don't know anything, on the other hand she is the booking clerk so maybe it won't be until Mid-August, which to me is totally unacceptable. I have this thing pressing on my collarbone making me feel like I can't breathe, and they want to wait a month??!!! I am so upset.

    I told them, if info is missing I am in possession of my records from 20 years ago. They said, the info has to come from the doctor. Some of my former doctor's offices don't even exist anymore! I have the boxes of records from 20 years ago, and I gave my family doctor the needed info to send on to the referral center, only it looks like her office is screwing it up. I asked the referral office why I can't just e-mail the pertinent records directly to them since I am the source of the docs anyway. Their answer: it has to come from the doctor. Right, the doctor's office that is screwing everything up.

    I am heartened to hear about women like your friend the doctor. thank you for sharing that.

    What I would like to say to all these medical offices: I WISH YOU WERE FIGHTING FOR ME, NOT FIGHTING AGAINST ME. At this stage, I am on the phone advocating for myself and that is causing me more distress then the cancer.

    I hope your port removal goes well. It is such a challenge to endure to have lymphedema on both sides, I feel for you.

    wishing you well,

    Amica


    · Share on FacebookShare on Twitter
  • couragement
    couragement Member Posts: 114
    edited July 2018

    Amica,

    I am so sorry you are going through this cycle of total $#@?*! I wish we could really swear here. It would make a great thread. I have great New Yorker friends that send me emails beginning with a nice long string of swear words in order to empathize with certain plights... and it helps! My husband has all sorts of great sayings, but one of my favorites is "what do you call a doctor that graduated last in their class?" Answer: Doctor. Well, if that ain't the truth. I have about 7 dear friends that are doctors and they are good ones, but even they agree that medicine has become a syndicate. My husband took videos of me on the phone dealing with medical offices (while going through chemo) about insurance, scheduling, etc. and you can hear me trying to explain things to them with patience, and then you see me puke into a trashcan. They could not care less. There were a few unique offices but the main experience of going through treatment that was stressful was NOT the medical treatment, but the difficulties in dealing with uniformed, unempathetic, unenlightened, and highly disorganized individuals. It was a job and one of the most stressful I have had. The feeling of the fight is exhausting and I felt like giving up often.

    I think things might go better for everyone if the medical community did not perpetuate the myth that they are all knowing and the patient is not. If they could have some humility then patients would cut them some slack for their errors and omissions, as we do in almost every field occupied by human beings. But their own hubris gets them into this boat. There is a beautiful book written by a pain patient called "the Pain Chronicles." It is filled with excellent data, and historical information. I actually showed it to a friend who is a pain doc and he said, "oh, interesting, I will have a look." Then he glanced at it and said "oh, never mind, it is written by a patient."

    I think you probably need to go with your records to the GP and stand there while they fax them over to the cancer center. It might be the only way. I have done many such similar things.

    I stand with you in strength!

    · Share on FacebookShare on Twitter
  • Amica
    Amica Member Posts: 488
    edited July 2018

    Hi dear Couragement

    It is always so good to hear from you. I got an appointment with the Oncologist on August 9, so while not super fast, that's not TOO bad. She is just a recent grad, which can have pluses and minuses, she finished her residency in 2016. This center, the Juravinski is a teaching hospital. Sometimes it's good to have a younger doctor because they may be more up-to-date on current protocols, and I would think at some point they have team meetings to review and discuss patients, so they have access to docs with more experience.

    I did follow up with several offices and was a pest and as much as I was able to ascertain, the necessary records were sent over. Anything that is missing I can provide them with a hard copy, or of course they can contact my oncologist from the U.S. I'm still waiting on some of the pathology results, don't know hormone status of the tumor or Her2 or anything. They said those could take a few weeks. But I'm beginning to detect a pattern here, in which they tell me things will take several weeks, and then things are done more quickly. So I shouldn't get so distraught!! lol

    I even got my doctor to send a requisition for ultra-sound of two other areas on my body I am concerned about, one a visible lump on my forehead of all places lol, and the opposite side collarbone area. Again, she had not been willing to place the U/S order, but I said very pointedly to the nurse, "How do any of you know what is there? You don't have X-ray vision." I think I shamed them into placing the ultra-sound orders lol

    I'm really low on energy right now, I don't know if it's the disease, or I am reacting to the psychological stress. Probably a bit of both.

    Remember Oliver Sacks? He had a lot of respect for the patient experience and the insights it provided.

    When is your port removal? I hope you are doing well.

    Amica


    · Share on FacebookShare on Twitter
  • couragement
    couragement Member Posts: 114
    edited July 2018

    Good morning Amica!

    YAY! An appointment! I am delighted to hear your news. I too like a young doctor. They do think differently and you can always get older ones for other opinions on what they have seen before. Are you allowed to have a second opinion paid for in Canada? And well done getting them to do more ultrasounds.

    I hope that you are finding good enough rest with the low energy. My least favorite low energy experience is when I am "tired but wired." I like tired and napping :). Are you watching any good shows? I found I could not read much during waiting times, or during treatment times, or during post treatment times! Yikes. But I surely did catch up on shows from around the world.

    I get my port out tomorrow. A wee bit sad to see this old friend go. Saved me so much poking and I felt like I was "plugged into the Matrix." Very AI in my mind's eye.

    Sending much love!

    · Share on FacebookShare on Twitter
  • Amica
    Amica Member Posts: 488
    edited July 2018

    Couragement,

    Good luck with your port removal and I am sorry to see your "friend" go, and hope they find not-too-painful sites for needle sticks in the future.

    I'm not reading much except nytimes and washington post online, but I do listen to LOT of podcasts, and am listening to audiobook Anna Karenina read by Maggie Gyllenhaal, only the chapters are all out of order lol.

    I don't know if the provincial health care covers getting a second opinion or not.

    I'm glum today. I'm wondering why my first appt is with an MO instead of a surgeon. I've tried to call the referral office at the Cancer Center to ask that question but they NEVER answer the phone, and I don't want to leave a message because then I find myself anxiously waiting for a call that may take days to come. I would have liked to meet with a surgeon in addition to the MO to see if they can get this tumor off my chest, I just hope they don't skip tests to save money in Canada, I believe I should have a Pet/CT scan to see if I have cancer elsewhere in my body. I think too far ahead and worry. Maybe eventually I'll have some faith in the Ontario healthcare system haha, because that is one of the problems, I have NO faith in the Canadian healthcare system. I realize people must get adequate healthcare here, it's not a third-world country, but I know of so many horror stories.

    I read all these studies that show outcomes are worse if surgery or chemo is delayed too long, and worry that all these little delays are adding up to long delays. I mean, I found the lump in June. And now if they order scans or tests, each of those will have delays of a couple of weeks. Oh well. Nothing I can do.

    take care,

    Amica



    · Share on FacebookShare on Twitter
  • SheliaMarie
    SheliaMarie Member Posts: 302
    edited September 2018

    My mets appeared first in my supraclavicular area, too. I found it by accident while I was rubbing a sore muscle. After biopsy confirmed it was breast cancer, I had a PET which showed mets in my cervical, axillary, supraclavicular, subclavicular, and subpectoral nodes, as well as a spot on my L2 spine. I was told surgery wasn’t an option so I started with a targeted therapy (Kisqali, similar to ibrance) and an AI. After almost a year on that, I’ve progressed to chemo.

    I still get upset at times, especially when I don’t feel good, and I often find myself angry. But I keep on keeping on and hoping to one day find the word stable (or better yet, NED!) on one of my scans.

    Hope all is well with everyone. I look forward to getting to know you as we travel this road together..

    · Share on FacebookShare on Twitter
  • Amica
    Amica Member Posts: 488
    edited September 2018

    Oh SheliaMarie, I feel for you. The surgeons do not want to operate on my infraclavicular nodes either so I am looking at a radiation clinical trial to zap them, and have been prescribed the Ibrance/Letrozole regime. I hope very much that your chemo is effective, and halts progression!! Hoping the side effects are bearable. Let us know how it goes.

    take care,

    Amica


    · Share on FacebookShare on Twitter
  • theresa45
    theresa45 Member Posts: 314
    edited September 2018

    Hi Ladies,

    I was diagnosed with Stage IV when mets were found in my supraclavicular, mediastinal and axillary nodes, along with some very small scattered tumors in my long. I had a 4 or 5 nodes removed from my neck and supracalvicular area for restaging. After over a year on letrozole alone, many of the nodes shrunk to the point of not being visible on PET. At that point, I had proton radiation therapy (at California Protons Cancer Therapy Center in San Diego) to all previously cancerous nodes. Proton radiation therapy allows for more precise targeting and delivery of radiation. I had earlier radiation therapy to my left side (no nodes) when I was diagnosed Stage 1a. I was able to argue for proton therapy due to left-side cancer (heart risk) and second time radiating in the same area. Proton radiation therapy damages less surrounding tissue, like lung, heart and esophagus. One radiated axillary node did eventually become active again on PET, but the others are inactive. I do have some new mets in nodes on the right side that were not in the radiation field. I encourage others to look into proton radiation therapy. Hope this helps! Theresa

    · Share on FacebookShare on Twitter
  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    Hi, everyone! I see this thread goes back awhile but I just found it. If anyone is still watching it, how did you find your supraclavicle Mets? I'm asking because I found a hard bony , immovable lump just below the collarbone, center of my chest on my cancer side. Had it xrayed, nothing mentioned, just apical pleural thickening in left lung. No explanation for the bony lump. I have an appointment with my onco next month, but before that i have mammo and ultrasound of good side. Would ultrasound tell me anything about this lump on my cancer side? Feels like bone spur, but strange place for that! It doesn't seem to be a node, it's below collarbone, possibly on sternum, hard to tell . Any info on how you felt yours would really help!

    · Share on FacebookShare on Twitter
  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    one more question. Did you lump, if you felt one, hurt? Mine doesn't hurt. Thanks!

    · Share on FacebookShare on Twitter
  • Lexica
    Lexica Member Posts: 259
    edited November 2018

    My supraclavicular nodes only showed up on scans - never palpable. Sorry I can't be more help! I don't think that nodes are typically painful, though... Let us know how the appointment with your onc goes

    · Share on FacebookShare on Twitter
  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    I will , thanks for answering, hope you are doing well?

    · Share on FacebookShare on Twitter
  • Amica
    Amica Member Posts: 488
    edited November 2018

    HI CaliKelly

    I found lumps below my collarbone because there was a swelling of the area--the swelling was firm and not painful. Ultrasound confirmed the lumps as suspicious, and biopsy confirmed it was metastases to the lymph nodes behind my pectoral muscle. But it doesn't sound like yours is similar to that. I think a CT scan or if it seems to be bone-related, a bone scan, would show if anything is abnormal in that area, so maybe for your peace of mind you could ask your doc for that or whatever test he or she recommends. Good luck, I hope yours is nothing.

    · Share on FacebookShare on Twitter
  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    Thank you for the info! I'm leaning towards bone spur, that's what it feels like to me, xray showed nothing but I'll tell my onco I want further eval. I had radiation in the internal mammary node area right where the bony lump is, so maybe the rads caused some sort of bone overgrowth or something. I thank you so much for answering and wish you well !

    · Share on FacebookShare on Twitter
  • Summerspring
    Summerspring Member Posts: 37
    edited March 2019

    calikelly did anything ever come from the hard bony area below your collarbone? That is exactly what I have right now.

    · Share on FacebookShare on Twitter

Categories