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Swollen armpit, collarbone lymph node & neck lymph node

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  • alicebastable
    alicebastable Member Posts: 1,939
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    Say what? Mine was a lower stage than yours, diagnosis and surgery nearly at the same time as you, and my MO still sees me every six months. Or do mastectomies not get followed like lumpectomies?

  • minustwo
    minustwo Member Posts: 13,080
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    Alice is right on. I saw both my surgeon & my plastic surgeon every three months for a year. I saw my MO every three months for the first year after final treatment, then every 6 months for the next 2 years. Now 7 years down the road - I still see him every year and get blood work every 6 months & imaging every two years.

  • cowgal
    cowgal Member Posts: 625
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    JoJo - I agree with Alice and MinusTwo. I am surprised you were released from your medical oncologist. I was a stage 2B when I was diagnosed in 2010 and my medical oncologist never released me. I still had to do mammograms on the side I didn't get the mastectomy on and a blood test. My MO visits were the same as MinusTwo except after 5 years, they stopped doing blood tests. I did get a blood test at 9 1/2 years from original diagnosis but that was only because I said that I was worried. I had the blood test at the same time I told my MO about my swelling on my collarbone area. For what it is worth, the blood test never picked up that I had cancer so evidently it is not reliable for all of us. Who is performing your biopsy? Is it being done using a MRI guided needle? In your situation, I think that I would call your oncologist's office and make sure they have the CT, are aware of what is going on and if they think that a bone biopsy might be needed and I would call asap so you can try to get the oncologist involved immediately.

  • laughinggull
    laughinggull Member Posts: 511
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    Great advice from cowgal, not sure if the biopsy was yesterday or next Thursday. Remember Jo-jo that we are on your side. The numbers are with you as most scares turn out not to be recurrences. Praying for you!

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Oh wow, this is not good to hear! I wonder why I was told to just follow up with my doctor? She has been great though, mammos, US, physicals and bloodwork yearly. If this is cancer I have to wonder if it could have been picked up earlier if I was still under MO

    Biopsy on Tuesday and is US guided needle - just some random doctor is doing it that I have never met.

  • lillyishere
    lillyishere Member Posts: 770
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    Jo-jo, it seems that every medical place has a different protocol. I am stage II as well and I go to a large oncology center. I see my MO two times/year mostly to have Zometa infusions. I get blood test to check that my kidneys can handle the infusion, then I go to the doctor's visit area for a couple of minutes visit and for him to sign the paperwork to OK the infusion. That's it. My GP checked way more than he does.

    Hopefully, your biopsy comes back as benign.

  • alicebastable
    alicebastable Member Posts: 1,939
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    Jo-Jo2018, what kind of "random doctor" is doing the biopsy? Interventional radiologists are the usual biopsy doctors, I guess surgeons if it's an excisional biopsy. I hope you're having it done at a good hospital/medical center.

  • cowgal
    cowgal Member Posts: 625
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    Jo-Jo2018 - It sounds like your family doctor was maybe doing what for a lot of us was done by our oncologist. Maybe your family doctor was sending your mammos and yearly blood tests on to your oncologist. Their office should be able to tell you if you do not know. US guided needle may be just fine. I think that is what they used when I was originally diagnosed back in 2010. My bone biopsy in 2019 was MRI guided and it may be that they need to do that for a bone. They may be doing the appropriate steps but just make sure you get your oncologist in the loop.

  • beesie.is.out-of-office
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    Jo-Jo, I haven't commented in your thread before but I've been reading and following. Good luck with the biopsy on Tuesday, and fingers crossed that that results are favorable.

    With regard to breast cancer follow-up, as Lilly said, every place has their own protocol. Here are the follow-up guidelines from the NCCN. Note that no mention is made of which doctor should be managing the follow-up. For many people it is the MO, but if you have been having the appropriate follow-ups managed by your PCP, and if your MO is brought into the loop should there be a problem, then I don't know that it matters which doctor you see.

    image

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Thanks Beesie

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    I doubt your oncologist would have caught it sooner. They only do extra screening for recurrences when we have suspicious symptoms, so your oncologist wouldn't have done anything differently anyway until you noticed the current swelling. Like the others said, I was surprised you weren't going. But primary care doctors are aware of our cancer history and know to flag anything unusual for follow-up. Yours sounds like she was on it! Several of my questions about weird symptoms were first handled by my primary care doctor, and she was the first one I saw when I started having the symptoms that turned out to be a recurrence. She sent me to pulmonary next, and once it was positively identified as being cancer, then I went back to oncology.

    I was going to my oncologist regularly but my recurrence symptoms were still identified by me, in between visits. I had actually seen her only a few weeks before the symptoms popped up so the cancer was almost certainly already there at my appointment. We just had no idea. It would not have changed anything at all though even if she had been able to know it was there.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Biopsy went well, it was pretty painless compared to the core biopsy I had in my breast. I was very happy with the doctor who did it. When I got home I googled him. I just thought it was going to be a "random" doctor. This doctor is amazing!

    https://www.ualberta.ca/surgery/about/message-from-the-chair.html

    Kinda freaked out that I am being seen by a head/neck oncologist surgeon though.... my mind is racing.

    Anyway, he says he hopes to have results by Friday but if they come in over the weekend he will call me (never had that!)

    Thanks for all your advise support & encouragement i will update when I have my results

  • laughinggull
    laughinggull Member Posts: 511
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    Thanks Jo-Jo for the update. So relieved to hear that you are i such good and capable hands. Happy for you

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Thank you LaughingGull

  • cowgal
    cowgal Member Posts: 625
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    Glad you are in good hands and hope that the results are negative

  • 2019whatayear
    2019whatayear Member Posts: 464
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    Glad you have an experienced doc- I hope you get fast results with good news

  • alicebastable
    alicebastable Member Posts: 1,939
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    When I had gynecological problems almost 15 years ago, and didn't have a doctor, the GYN practice affiliated with the medical center I used assigned me one randomly. Turned out he was head of that department. Just letting you know, the hot shots take their turn in the rotation, too, and there's not necessarily any other meaning. Actually, thinking back, I've had that happen a couple other times with different medical issues.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    I got my results from the biopsy, the cancer has metastized to the lymph nodes 🥺

  • cowgal
    cowgal Member Posts: 625
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    I’m so sorry Jo-Jo2018. Have they told you yet what the next step will be?

  • alicebastable
    alicebastable Member Posts: 1,939
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    I'm so sorry to hear that. Sending you a big but gentle hug

  • beesie.is.out-of-office
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    Jo-Jo, I'm sorry. Sending you hugs and support.

  • laughinggull
    laughinggull Member Posts: 511
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    What a freaking sneaky bastard this disease is! I for one am on your side and wishing you best. Hoping those nodes are bravely playing goalie, preventing the cancer from spreading further. Hopefully you will get a plan in place to nuke that cancer into oblivion soon.
    Rooting for YOU Heart

  • lillyishere
    lillyishere Member Posts: 770
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    Sending you hugs Jo-jo. LaughingGull is right, this is such a nasty disease.

  • lw422
    lw422 Member Posts: 1,399
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    Jo-Jo--I've been following along on the thread since you first posted, hoping that this would turn out to be a non-event for you. I'm sorry that you have to deal with the "shit sandwich" that is cancer again. Just know that many of us will be in your corner for whatever support we can provide. Hang in there, girl.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Thank you everyone for your support. No plan of action yet, hoping to get one soon to get this bastard out. All I know for sure is that I need a core needle biopsy for more testing. Argh!

    You are all amazing! When I was first diagnosed I trolled this site but never posted. Im so glad I reached out this time.

    Strongs to you all ❤

  • zebra_co
    zebra_co Member Posts: 35
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    JoJo, I am so sorry to hear this. I was really hoping and praying that it would turn out better for you. That is awesome that the doctor called you on a Saturday. I have had to wait through the weekend before. It's not fun.

    You will get through this. It really stinks though. Thankful that this forum is here for all of us.

    Stay strong!

    zebra

  • 2019whatayear
    2019whatayear Member Posts: 464
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    Thanks for the update. I'm sorry cancer is back. I'm glad that you were able to get in and diagnosed quickly and I hope that the treatment plan will be swift and that everything is easy to kill.

    big hugs.

  • jons_girl
    jons_girl Member Posts: 444
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    So sorry to hear your cancer is back. sending hugs to you. We are here for you to chat with anytime!💕

  • wallycat
    wallycat Member Posts: 1,249
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    I'm so very sorry that you have to deal with this. As others have posted, I had such hopes that this would turn out to be a nothing-burger. I haven't re-read this thread but didn't you say you had scans and no spread except for the nodes? I believe that does not make it stage iv. Do keep us posted and my heart and thoughts are with you.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Thank you everyone for the encouragement.

    Wallycat, I have no idea on the stage or how it is actually staged to be honest. My doctor did say that there was no organ involvement from my CT scan.