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Local Recurrence Chime In

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  • 7of9
    7of9 Member Posts: 474
    edited September 2018

    Sunshine - thanks for the reminder! My ultrasound tech wasn't a tech - it was a doctor. I've noticed that's all I get anymore since diagnosed originally. Very stoic but seemed confident she looked hard in area of concern and didn't see anything to warrant follow up. I'd imagine that now I've had 4 good ultrasounds - no one is slacking. Why we just can't take the good news and skip through the daisies is beyond sad! Thanks for the reminder to chin up. My son was 2 1/2 when I was diagnosed. He's over 9 now and I basically just got as clean of a bill of health as I can get! :)

  • KBeee
    KBeee Member Posts: 695
    edited September 2018

    Jarkwright05, I had chemo after my local recurrence because my oncotype which was 16 the first time, came back very high the second time.

    AMica, It must be frustrating to be classified as stage IV...adn scary...but the good news is that if it took that long to come back, it is VERY slow growing, and hormonal therapy will likely slow or halt its spread for a long time.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    After my entire Holidays was ruined for me and my family, going through scans and biopsy, finally I got the news yesterday. My cancer is back in soft tissue under my collar bone. Ct of abdomin and pelvic is clear though. At first they thought something is in my liver but after more scans it came out clear. blood test was normal too. Prior to diagnosis I had extremely dry and itchy skin on my entire body for a month which makes me feel maybe something is wrong with my liver anyway. I had a double mastectomy at the age of 36, no family history in 3 generations! I was stage 2A no lymph node involved.Her negative, Tumor was 2.2 cm .I was on tamaxifen for 5 years(I was suppose to get off the hook on jan 31). New tumor is also hormone receptor, its 2.6 and probably wont be able to know if it's in my lymph or not before doing a pet scan.I recently had this new test that can tell if you take benefits from having tamaxifen and my results were negative. Any word of wisdom regarding oophorectomy rather than new hormonal therapy, to have better chances to fight? I talked to my MO over the phone and she said hormonal therapy is the only thing she thinks she wants to do! No chemo! No radiation! No surgery! does that make sense at all? I need to buy more time because I have a 10 years old with Auto immune problems who really needs me due to special diet she has to have.please give me any advice that you can.

    Anyone here knows about the benefit of CAR T CELL therapy? City of hope has a clinical trial.

    Thank you all


  • jackboo09
    jackboo09 Member Posts: 780
    edited January 2019

    Hi ladies

    I just found this thread and have found it interesting in terms of the discussion about staging and stage 3 or 4.

    I had a loco regional recurrence to an internal mammary LN with mediastinum invasion. The leading cancer specialist at the Royal Marsden, London recorded this 2.9cm tumour as loco regional. No other distant areas of cancer. However my onco treats me as stage 4.

    I have now been NEAD for 10 months and in March will be 2 years out from a stage 4 dx.

    My primary cancer occurred 6 years before this recurring cancer. In 2011 I had a intra mammary LN positive so I do think this round has spread through the chest LNs.

    Would welcome anybody’s opinion on this.


    Liz

  • KBeee
    KBeee Member Posts: 695
    edited January 2019

    You absolutely need to get multiple opinions. You will need to switch from Tamoxifen to an AI, so you'll need injections to shut down your ovaries, or just have them removed. I would want justification for the no surgery, radiation , or chemo. Honestly, I would not be comfortable with that treatment plan. My recurrence was under the edge of the pec muscle, and another tumor in original place. MO at May told me radiation and AI was all that was necessary (I did have surgery). He would not do oncotype. I got another opinion, did oncotype, and found it to be very high, so we did chemo. I was so glad I got multiple opinions. My gut told me I needed chemo, and the testing confirmed it.


    Keep us posted. Sorry you're dealing with this.

  • jackboo09
    jackboo09 Member Posts: 780
    edited January 2019

    Hi Kbee

    Thanks for your post. I am currently on a treatment plan, but it has been postponed recently while my neuropathy is assessed.

    Here is what I am on: Herceptin and Perjeta every 3 weeks. Goseril injections to shut down by ovaries every month and a daily Al ( Letrozole) I also had 4 Taxotere when I reoccurred but could not tolerate the 6 that I was due to have.

    So all in all I have had quite an aggressive regime.

    The Marsden in London was my second opinion. The THP regime is the recommended standard of care after the Cleopatra trial showed a survival benefit of adding in Perjeta.

    I am ‘happy’ to have had the above in the sense that I am confident that it is the right treatment. I just wonder about the whole loco regional stage thing.

    Liz

  • KBeee
    KBeee Member Posts: 695
    edited January 2019

    It does sound like you've been on an aggressive regimen. I follow your posts, and didn't even realize it was you who asked the question (chemo brain). I have seen that staged multiple ways. Most people I know who had it staged as stage 4, had the recurrence on the opposite side. Those who were 3C had it on the same side. Those who had it recur around the clavicle or neck and were stage 3C were all told they were being treated as stage 4 though, as far as treatment and monitoring for life ("all" in this case means 2 people I know locally). I'm so glad you're NEAD. And hope it continues to be NEAD...forever!

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    Hi Kbeee

    Thanks for your reply! Here is the new plan for me. surgery if possible and rads on entire chest.removing ovaries and new hormonal therapy.still no chemo though. My new tumor nuclear grade is 2, the original was3, I asked for oncotype and was told it's for original cancer not recurrence. My tumor is 95 percent hormone receptor

  • bevin
    bevin Member Posts: 519
    edited January 2019

    HI Aluirophile- I am sorry for your recurrence. Can you tell me how they found it in the soft tissues and what did it feel like that prompted you to go get checked.

  • Toni_S
    Toni_S Member Posts: 15
    edited January 2019

    I was diagnosed with Stage 1 lobular cancer in 2011, lumpectomy, radiation, no chemo because low onco score. Five years of Arimidex. An axillary lymph node recurrence was found “accidentally” in December 2018 on a CT scan of the chest for pneumonia. Radiologist noted an enlarged lymph node that upon subsequent biopsy tested positive for lobular cancer. Abdominal, chest, and pelvic CT scans are clear, waiting for bone scan results and breast MRI results. I am deeply depressed by what I find on the web, most studies offer little reason for optimism.

    I will be seeing my MO tomorrow. I feel lost, depressed, and really bummed. Looking to find some reason for hope among the stories of women here. I admire all of you for your resilience.

    Axillary dissection is scheduled for the 24th. One foot in front of the other, I will get through this

  • KBeee
    KBeee Member Posts: 695
    edited January 2019

    Ailurophile, I would definitely seek a second opinion. Oncotype is designed for original tumors, but it can be used in recurrences. There just is not as much data. My MO was not sure insurance would cover it, but mine did. Mayo originally told me there was no need for chemo either, and that the AI would suffice, but thankfully, my local MO looked further. Different MOs have different ideas.


    Toni, Sorry you are dealing with this. Recurrences are so much harder mentally than dealing with it the first time. Stay off of Google. Generalizations do not take into account individual circumstances. It sounds like your recurrence was found early. Hoping it has not spread and can be dealt with via surgery and changing hormonal blockers.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    Hi bevin

    I found it myself due to pain. It is hard and attached and feels like a hazelnuts. I went to my Mo and her nurse visited me and wanted me to check back with my family doctor, because she thought it's a simple ripped tissue and will be gone in a month or so. I came home waited another week while I was sure it's not that simple. I also had a very bad pain in my shoulder every couple of months that was going all the way to my arm and was told it's a pinched nerve. So putting it all together I knew....

    Went back to her office and this time I met my Oncologist not the nurse, she touched it and immediately ordered a CT of infraclavicular area. Ct result suggested highly suspicious to malignancy, biopsy came after and Bam back!

    In my recent visit she said we might never know if it's the soft tissue or the lymph even though ct called it soft tissue.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    kBeee I will definitely check with another Mo. I will post an update

  • Christmascarol
    Christmascarol Member Posts: 19
    edited January 2019

    Aulurophile and Toni,

    So sorry to that you are joining our group. It is a lonely place as there are so few of us. Kbeee has once again provided some very good advice. A big shout out to her for being there for so many of us. Just know you are not alone. I know it helped me. I am always so happy when I check in and find so many of us still Ned. Hang in there. Xo

  • Astrid
    Astrid Member Posts: 1,033
    edited January 2019

    I'm sorry to read of your recurrences too. Hopefully the node recurrence can be taken out and that's the end of it. Is it possible that this node was simply missed in original dx and just kept growing?

    I think there is also some new data on axilla nodes not necessarily causing spread?

    I had 1st recurrence 1 year out from double mx and both arms had axilla clearance in 1st surgery.

    Original dx

    1 pos. Node left side and..2 tumours in left breast found..IDC. chemo only. Some years of aromasin.

    Er+ PR + Her -

    1st recurrence, my surgeon thought it was a micro met missed and not recurrence(probably)

    Had wide excision and rads. Same pathology result as original dx. No further problems until

    2012 ...9 years after 1st recurrence.

    Right breast..this time ILC. yep..different pathology and this time ER - PR + Her2 -.

    Wide excision and rads.

    No further problems😀

    I write hoping to give some hope. My cancer started in 2002

    I have only had local recurrences...tons of treatment and ops.plus chronic side effect management.

    And I agree with KBee about the difficulty emotionally.

    You feel like you relate more to stage 3 and 4 people even if you have local recurrences.

    I needed a lot of counselling post 3rd dx. It helped a bit.

    Wishing you many many years of ned or chronic disease management, but no further spread.

    Much love, empathy amd cyber hugs to all.



  • Astrid
    Astrid Member Posts: 1,033
    edited January 2019

    just want to add that whether they call it a recurrence or new primary...it is still mentally and emotionally a 'recurrence' experience.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    Christmascarol. Thanks for your heartwarming message. I do not feel alone any more.I remember when I was diagnosed, for the first time I even didn't want to take a look at recurrence related communities, because I was so scared of that.I said it wont be me, with early stage and no lymph involved. I thought I will be a forever survivor....

    Astrid, your story gives me hope to fight again! Thank you for sharing and thanks for being such a positive person.

    KBeee. Thank you one more time for giving us the newbies as much useful infos as you can!

    Toni. I feel your pain and pray for all of us. Let's try to fight this one more time.

  • Christmascarol
    Christmascarol Member Posts: 19
    edited January 2019

    Astrid,

    You have been through so much, and are still dealing with ongoing side effects,yet here you are trying to help others. I sure do hope that none of us ever have to deal with this again. Thank you so much for sharing your story and giving the gift of hope. Xo

  • Toni_S
    Toni_S Member Posts: 15
    edited January 2019

    Many thanks for your response. you are an inspiration! Three recurrences is a lot to deal with. So glad you are doing well, I hope to follow your example. All my scans are clear so dealing with isolated local recurrence only. Surgery next Friday and then on to chemo. I am feeling so much better staying off of google. It’s not useful with so many conflicting articles, and certainly not helpful

  • bevin
    bevin Member Posts: 519
    edited January 2019

    Ailurophile, thank you for sharing how you found the lumps and what they felt like. Praying all goes well for you and I am sorry you're facing this.

    Bevin

  • Astrid
    Astrid Member Posts: 1,033
    edited January 2019

    That is rough news Ailurophile. Let'a hope it will be the last of it.

    Thinking of you too Toni. One day at a time eh?

    Christmas Carol, back atcha!Heart

    Dear KBee.. I was so sorry to read of your current anxieties. I totally get that. Please let us know how your appt goes(or if you already had it!)Hug

    Oops edit: KBee I just realised you were writing of your appt im March 2018! You have probably had another appt since then.😀so I am glad you are still doing well.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    Hi everyone

    I am totally devastated because my SO. Thinks my tumor is not surgically removable. It's a cluster of lymphs on the corner of the lung next to a main artery that takes blood to the lung.its also 2cm deep under a muscle. She suggested seeing Radiation Oncologist to shrink it as much as possible to prevent it from moving to other organs.I will have a pet on Monday. Keep me in your prayers....

    Do you know anyone who got result from rads, without surgery?

  • Astrid
    Astrid Member Posts: 1,033
    edited January 2019

    oh no Ailurophile.

    Of course, I will hold you close in my prayers.Hug

    My first thought is to get a second opinion with a highly recommended surgeon at a top cancer hospital if you haven't already.

    Do you have a trusted oncologist you can discuss this with also?

    Gather as much info as you can until you feel ok with the next steps.

    We are all here for you and wishing you fortitude, courage and calm for whatever you face next. Gentle cyber hug.


  • KBeee
    KBeee Member Posts: 695
    edited January 2019

    I agree with Astrid. Your SO may not feel comfortable resecting it, but a surgeon at a major cancer hospital may.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2019

    Ailurophile, I just wanted to echo what KBeee and Astrid said. Sometimes getting to another specialized center makes all the difference when our cases become more complicated. Here is the NCI cancer center locator, it's a good resource: https://www.cancer.gov/research/nci-role/cancer-centers

    I'm sorry you're dealing with this, I hope you can find some answers soon. Hugs and best wishes for your PET scan.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    Thank you so much my dear BC sisters,

    I will follow the link and hopefully will find something more promising. I will do a PET tomorrow and I just want to be positive about my results....

  • Astrid
    Astrid Member Posts: 1,033
    edited January 2019

    so do we!

    Hoping for very good reults with the PET.Hug

  • mellee
    mellee Member Posts: 220
    edited January 2019

    Ailurophile, I see you're in Irvine. The doctors I've seen at the UC Irvine Chao Family Comprehensive Cancer Center are fantastic. Definitely recommend it for a second opinion.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    melee

    Yes! thanks to buttonsmachine and other ladies I am going to make an appointment with them tomorrow. Are they going to give me direction of where to start? Should I see the surgeon first or what do you suggest? Do you have a favorite who I can request to make the appointment with? Thank you so much

  • Christmascarol
    Christmascarol Member Posts: 19
    edited January 2019

    ailurophile,

    So sorry to hear about your news. Hope your scan is clear. Good to hear you are going to make an appt to get a second opinion. I dont have much to offer in the way of help in answer to your questions. However if you do have surgery before rads you may want to check out the following info that has been gaining more and more credibility.

    ‘Surgery in breast cancer patients may trigger a negative response in the body that allows dormant cancer cells to thrive. However, according to a new studypublished in Science Translational Medicine, new research suggests taking a non-steroidal anti-inflammatory drug (NSAID) around the time of surgery could help stop such growth in its tracks.xo