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Enlarged axillary lymph nodes suggestive of BC recurrence found UPDATE - it's cancer again

Hi, y'all — I guess the diagnosis is not official yet but it seems to be a foregone conclusion. I am almost 9 years out from left breast cancer diagnosis. Did the mastectomies, 9 weeks of Taxol (all I could tolerate); did 18 Herceptin treatments; 4 months of Arimidex; 3 years of Exemestane; 8 months of Tamoxifen —- all bad, long story. Now 4 enlarged axillary lymph nodes the largest being 17mm x 24mm have been found. Meeting with oncologists Monday. Looking for all the advice I can get — questions to ask, next steps, surgeries, scans, treatments. They have me scheduled for 15 minutes!! I need to make the most of the time. I will be getting a 2nd opinion and possibly moving records to a town closer to where I live now. Has anyone done this? Thank you very much.

UPDATE: Biopsy is back — it's breast cancer again ER+PR+HER2+ - apparently it is only in 3 lymph nodes under my arms per the petscan. They say I am very lucky it was even found. We meet with the oncologist next week - he already had a surgeon call me about inserting a port — and I don't even know what type of infusion he is recommending. You can see by my history that chemo was not well tolerated. So I have postponed the surgeon until after the oncologist and I talk. I will be 69 next month — and I want to live well — but I want to be treated with the least toxic solutions. Am I crazy?


  • fairgirl
    fairgirl Member Posts: 2

    Hi desdemona,

    Thinking and praying for you as you face the weekend before your appointment. When I've faced those kind of weekends waiting, I approached them as "the before" I was none the wiser. I went out and lived it up a bit. Now, my lived it up is rather simple. Something like a visit to a favorite place with my favorite person or people.

    Back to your concerns. Rest assured that you will be given more than 15 minutes. Don't feel you have to rush. Take the time you need. I found that organizing myself with questions at the ready and a means to take notes whether by recording on my phone, writing down, and/or having an advocate with me to be a second pair of ears is helpful. There may be a lot of information given to you Monday and it may take time to absorb the information and come up with a decision for the course of treatment that is best for you. Asking the next steps and clarifying your understanding and making sure that you are heard is important.

    Some questions that I asked:
    -When can I schedule a PET scan? Noting, I received push back that this may not be covered by my insurance. I reached out to my insurance and it turned out a pre-authorization was needed from the doctor and it was covered.

    -What is the treatment based on? For example, based on recurrence, based on location of recurrence, based on studies or trials (request for the name of the study or trial)?

    It may be helpful to review after visit doctor notes through a patient portal. This was helpful for me to come up with additional follow-up questions.

    I sought out a second opinion and it was very similar to the first, it gave me time to pause and advocate for myself and feel good about my decision in the end. To feel empowered. The one thing that I did not like is that my first opinion oncologist office pushed for me to share the information from the second opinion. I was not comfortable doing so and never gave the permission for the information to be shared. This was a very personal decision. My first oncologist did end up calling me one evening since I was taking my time to make the decision and she made the comment that she understood that the decision has to come from the heart. I appreciated her call and her speaking in a much less clinical tone.

    My oncologist is 50+ miles away. My second opinion was almost 200 miles away. In the end I went with the closest oncologist and have had appointments at locations within the hospital network that are closer to home ranging from 20-30 miles away. My oncologist is opening an office less than 5 miles away and I am advocating for transferring to the office once it opens in July. It is usually easy to transfer records since everything can be transferred electronically. It is a matter of contacting the right people and perhaps signing off on the transfer of your health information.

    For me it has seemed that I have to advocate for myself and at times it is hard to know what questions to ask. This is a very personal journey and one knows themselves the best. There are so many kind and supportive people along that way that do make the journey easier.

    All the best to you on Monday, that you will have a good meeting with your oncologist.

  • desdemona
    desdemona Member Posts: 10

    Thank you so much for your detailed response, Fairgirl. It sounds like we have some similar geography issues. I had a blood draw today at a regional office about 14 miles away and learned I could also get treatments there instead of driving to the city. Your advice is very good and sound ... I especially like the recommendation to find out what the basis of the treatment plan is. I do need to understand the science to a degree. We have so much to think about ... and your comments will help me begin to advocate for myself. Thank you.

  • moderators
    moderators Posts: 7,206

    @desdemona and @fairgirl, we're sorry you had to join us, but wanted to send you a warm welcome to community. We hope you find this to be a supportive place.

    @desdemona, you can read much more about Getting a Second Opinion at the main site, including why, where and when to get them, and what to expect.

    We also wanted to inform you both that as a member of our community, you can also attend our free weekly virtual meet-ups to exchange information and ask questions in real time. In case you might be interested, here is our webpage, where you can register for them:

    We hope this helps! Looking forward to hearing more from you.

    The Mods

  • cookie54
    cookie54 Member Posts: 542

    @desdemona Hi , Sorry your dealing with this again! So I'm guessing no biopsies have been done on axillary nodes yet? So besides a PET to rule out distant metastasis, if and when that is confirmed I listed two important tests that give more detail about your cancer. Wasn't sure if your familiar so figured I would paste the meanings in case. After diagnosed with lymph node positive then I would discuss axial lymph node dissection surgery to remove the chain of nodes involved. Maybe you will want to use same surgeon who performed mastectomy's? Besides chemo, radiation is often advised post surgery.

    I also went for a second opinion( 2 hours away also) and my MO office was excellent at sending all my electronic records. It was an easy process and was worth it. So now my current plan was collaborated between my current MO and 2nd opinion doctor. As they say two heads are better than one! Also I found my second opinion hospital had some research studies that were different also. Both my doc's are at major institutions but you just never know.

    Hope this helps, feel free to pick our brains lol.Good luck Monday, hugs.

    FoundationOne CDx test

    Listen to pronunciation(fown-DAY-shun…)A laboratory test done on a tumor tissue sample to help match a patient's tumor to a specific drug or therapy. A FoundationOne CDx test looks at many different genes in the tissue sample to help identify whether a patient’s tumor has a specific gene mutation (change) or biomarker that is targeted by a particular drug or therapy. This helps determine whether the drug might be an effective treatment for the patient's tumor. A FoundationOne CDx test is a type of companion diagnostic test. FoundationOne is a registered trademark of Foundation Medicine, Inc. Also called F1CDx test.

    What is PD-L1 testing?A PD-L1 test measures what percentage of cells in a tumor “express” PD-L1. Tumors that express high amounts of PD-L1 (50% or greater) may respond particularly well to checkpoint inhibitors (a type of immunotherapy drug).

  • desdemona
    desdemona Member Posts: 10

    Thank you, Cookie54. Oh my gosh, I have so much to learn again. Your suggestions are also on my list now and everyone should always assume that I know nothing😁😁

    My big dilemma this time around is that I have steatohepatitis from the first treatments.

    The bloodwork has come back ... all is normal even the two cancer markers they follow ... but from what I read that doesn't mean much necessarily.

    I appreciate you all so much.

  • cookie54
    cookie54 Member Posts: 542

    Your very welcome, keep us posted. Glad to hear things are looking good so far. Yep I always have said there is nothing like a tissue biopsy and that's the truth. We can sit back and guess all we want but need absolute pathology.

  • desdemona
    desdemona Member Posts: 10

    No updates today. There was a huge storm with very high winds where my cancer clinic is and they lost power last night. Power was restored to their office around 4:30. They will notify me of a new appointment time. I've requested a telemed appointment and an appointment for a biopsy — because I think that's what they will want to do first. We'll see if they will go for that idea!!! I really don't want the "talk about it" appointment anymore. The markers still haven't been posted but I've found scientific discussion that they may not be elevated if the cancer is early. cookie54 — I like what you said - nothing like a tissue biopsy!!

    There are two other things that could be affecting my shoulder - 1) I took another covid bivalent in that arm just two weeks before the low dose CT that showed the enlarged lymph nodes and 2) this shoulder has severe arthritis — in 2020 there was an effusion and these things can get infected. It's my last natural large joint. Both knees, both hips and my right shoulder have been replaced. But research indicates that a biopsy is called for just because of my history.

    Thank you, ladies.

  • cookie54
    cookie54 Member Posts: 542

    @desdemona Ugh geez ok, hope you get some answer soon. Yup covid boosters have definitely been know to cause axillary lymphadenopathy. Hoping that's what it is, fingers crossed.

  • fairgirl
    fairgirl Member Posts: 2

    Wow, what a turn of events! Sounds like this may be a good thing so you can go the route you feel good about with the biopsy first. As they say knowledge is power. Some days though I could easily live with ignorance is bliss.

  • desdemona
    desdemona Member Posts: 10

    fairgirl - You made me laugh out loud. I meet people and know people who just float through their lives believing anything most anyone tells them - following all instructions without question - and never, ever deep diving into any subject that affects them. They are so happy and content!! I have never been that person and sometimes I wish that I could be. fairgirl and cookie54, thanks for the support and information.

  • katg
    katg Member Posts: 193

    I was reading tonight and thought about the bone marrow test i had. My white cells never got higher then 2.8 and were usually lower even after I finished my final pill of Lynparza 4 months before. Chemo had been down 1 1/2 years ago. I was a platelet donor for 25 years and my platelets were sitting at 130. Before cancer they were 330. So, I pushed my blood clot doctor's office to get me into hematology. I number of notes in the portal and on the 3rd phone call I got a referral. City of Hope is known for research and treatment of blood cancers. Yes, I was given a bone marrow biopsy. The truth. It was not bad. Not easy, but very manageable. The PA said she got two very good samples. Bone and fluids.

    I saw unremarkable a few times on the report in my portal. I did not see farther down that my blood couple with the 2nd gene mutation I carry what often lead to leukemia. My Mom had chronic lymphoma. The chemos i took along with the Lynparza chemo pill have led to leukemia. I am now on a transplant list. My blood will be checked every 2 -3 months. Next is December 12th. The bone marrow is the truth. Would i have known if I had not had the test? Would the leukemia be growing? As has been said over and over. We do not every know for sure the how and why who gets what. I just believe as you all say. Treatments are better than ever.