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Local Recurrence Chime In

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  • Astrid
    Astrid Member Posts: 1,033
    edited March 2019
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    seems you have a very caring support team right behind you here A. Come talk anytime...no doubt one of your global posse will be up. X


  • ailurophile
    ailurophile Member Posts: 124
    edited March 2019
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    love all the support! You are a wonderful group of ladies with tons of useful information. Thanks for having my back.I truly love you all and pray for all of us.

    Treatments will start this Friday. I will be in her clinic the entire day. They want to monitor me closely.

  • Astrid
    Astrid Member Posts: 1,033
    edited March 2019
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    will hold you in prayer on friday A.Hug

  • MsMungo
    MsMungo Member Posts: 2
    edited March 2019
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    Hi all, chiming in! I'm up to recurrence #3, over an 18 year period, starting with 2mm of DCIS in 2001. All have been local including last 2 that have recurred in the mastectomy scar. Never had any reconstruction, so the recurrences were pretty easy to spot. Asked for the Oncotype test to try to help make a decision on chemo. Came back at 38. So have just started TC chemo last week. Was on Arimidex for 6 years until 2017. MO has said he will put me back on it - probably indefinitely. I'm fine with that. Hugs and love to the brave women here.

  • Astrid
    Astrid Member Posts: 1,033
    edited March 2019
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    so sorry to hear about this latest recurrence Ms Mungo. It is not easy going through repeated dx's no matter if distant spread or not.

    It looks like this is your 1st chemo and you had whole breast radiation in an earlier recurrence. Is that right? I hope the chemo works brilliantly for you and goes smoothly.

    Hug

    Astrid.

  • KBeee
    KBeee Member Posts: 695
    edited March 2019
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    MsMungo, Sorry you are dealing with another recurrence. I hope this is your last! Hoping you tolerate the chemo well, and encourage you to join hte chemo board for your month. Mine was a sanity saver both times!!!

  • Christmascarol
    Christmascarol Member Posts: 19
    edited March 2019
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    MsMungo,

    Big hug to you! So sorry you are dealing with this yet again. It is so difficult the first time around, yet some of us ladies have 2nd third and fourth rounds. Good to hear you had the oncotype test to know you need chemo, even though I wish you didn’t. I am sure we all hope this is the last time you ever have to deal with a recurrence and that the treatment goes well. You are brave, and thanks for sharing. It is good to know for us on this thread that local recurrence(s) can be successfully treated over many years, even decades, and we should keep on trooping and not ever give up hope. You, like others on this thread, are a model for us. Xoxo

  • Christmascarol
    Christmascarol Member Posts: 19
    edited March 2019
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    You can’t be brave if you’ve only had wonderful things happen to you. Mary Tyler Moore.


  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited May 2019
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    Hello Ladies,

    Just discovered recurrence within my incision. As you all have noted its so much worse with the second diagnosis. Nodes are clear, PET scan tomorrow. Sure wish they would find some better treatments.

  • 2002chickadee
    2002chickadee Member Posts: 79
    edited May 2019
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    movingsoccermom, I'm so sorry you're joining this club! Fingers crossed for a clear PET. No matter what they find, you'll find a way to put one foot in front of another to tackle this new challenge. Sending hugs.

  • pesky904
    pesky904 Member Posts: 263
    edited May 2019
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    movingsoccermom, best wishes for a clear PET. Mine is Monday. You're in my thoughts!

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited May 2019
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    movingsoccermom - I'm sorry you're in this situation, but you've come to the right thread.

    I don't want to overwhelm you at this point, but please insist on a breast and chest wall MRI before you undergo any surgery. My original Drs didn't do one after my local recurrence, and then they did a mastectomy but left cancer in there AGAIN! Long story short it made a mess, and I had to go through a lot to clean up that mistake.

    I hope your PET scan results are good. Hang in there and please keep us posted. Gentle hugs.

    Heart

  • hodgepodge
    hodgepodge Member Posts: 15
    edited May 2019
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    Here I am on the merry-go-round of cancer again.

    I was diagnosed the first time at 35 in 2005. I found a lump but mammo and ultrasound didn't see anything suspicious so had a needle biopsy. It was determined that it was DCIS. I had a lumpectomy with bad margins then a recision with clean margins followed by 7 weeks of radiation.

    Recently I started having a lot of pain and thickness in my left breast. Again, mammo and ultrasound saw nothing, but with my history they agreed to an MRI. It found a suspicious spot (6mm) not on the left side I was worried about but just behind the scar from the previous lumpectomy deeper into the breast.I had an MRI guided biopsy and it came back as IDC. I decided to have a DMX and they removed a 4mm area with very wide margins and the left breast was clear. All good news!

    My oncologist says, great! You're done. Tumor is too small to oncotype, the one lymph node checked is clear, tumor is tiny and only grade 2. We can consider Tamoxifen if you tolerate it well, but don't worry, your chance of recurrence is 1-3%. This all sounds too good to be true. I told him about pain I've been having in my pelvis and he agreed to do a bone scan (get the results today). Every ache I have makes me think I should have more tests to make sure this cancer that lurked for 13 years hasn't taken root somewhere else.

    I'm thinking about getting a second opinion. I am very thankful for all the good news because I know that makes me one of the lucky ones and really hope this doesn't come across whiney.


  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited May 2019
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    Sooooo. PET scan not good. More biopsies--mediastinum nodes this time. Brain MRI, bone scan. Why this cant all be done at once frustrates me. Will keep you posted.

  • salamandra
    salamandra Member Posts: 745
    edited May 2019
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    Hey hodgepodge and movingsoccermom,

    I'm sorry you're having to deal with this. The drip-drab of information is like tailor made to push anxiety buttons, as if the situation weren't already difficult enough. Hoping for the best for you!

  • KBeee
    KBeee Member Posts: 695
    edited May 2019
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    Hodgepodge and moving soccermom, I am sorry you are dealing with recurrences.

    Movingsoccermom, when are the tests scheduled? Sorry you have to have so many, and not at the same time. Scans and waiting are so very hard.

  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited May 2019
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    Thank you KBeee. Had the brain scan yesterday. Wowzers, did I feel rattled. This morning did the EBUS procedure; tube down your trachea with an ultrasound tip and from there guide a needle into the nodes located in the center of the chest. No results for quite a few days. Ugh. Will keep you all posted.

  • purplestargazer
    purplestargazer Member Posts: 31
    edited May 2019
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    Movingsoccermom - the pace of testing feels practically intolerable. I'm sorry for all of the attendant anxiety. Thinking of you.

  • Astrid
    Astrid Member Posts: 1,033
    edited May 2019
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    good luck with the tests msm. Really sorry to read the results of Pet were not great.

    Thinking of you.

  • JanetMara
    JanetMara Member Posts: 147
    edited May 2019
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    hello ladies,

    I just found this thread and like most of us,there's always something anywhere,and it's harder this time.

    Good luck everybody with their procedures,tests and treatments,I hope it will be better than the 1st time.

    I had a L mastectomy 2017 and after mastectomy,biopsy results came back stage 1. 2018,there is a growing lump on my L supraclavicular area,again I had to have CHEMO,sad to say I have severe side effects,MO stopped the chemo and recommended for radiation,after I saw RAD ONCO,he recommended chemo before radiation for 2 weeks,but my platelets and rbcs started to go down as low as 23,000 and I was bleeding in my gums,my MO did not recommend for a platelet and blood transfusion,here I am now suffering with the complications of low platelets as joint pains,muscle pains,weakness,sleepless at times,weak immune system,sinus infection,dizziness,am monitoring myself for any bleeding and go to ER and MO just recommended blood tests every week and bone marrow aspiration and biopsy (am waiting for their to call if authorization is approved),how sad that this MO is not so concerned that I might bleed anytime,so I made appointment with his PA who has more experience and more knowledgeable than him.

    Janet

  • KBeee
    KBeee Member Posts: 695
    edited May 2019
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    Janet, that sounds horrible! Hoping your platelets come back up quickly.

  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited May 2019
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    Janet, I also hope you get things sorted out quickly.

    Hodgepodge, this disease is so sneaky I'm not sure it's possible to whine about it. I too should have had no recurrence by Oncotype, yet here I am....

    My PET scan results were finally posted where I could read it, and boy was that a nightmare. I knew about the many lymph nodes (R intra-mammary and mediastinum) and had an EBUS to sample those. Somehow no one mentioned the LEFT pulmonary nodule. No brain, liver or bone, but that nodule scares the crap out of me. I will find out the node results 3 June. At least I can see my kiddos in the mean time.

    Best wishes to you all

  • JanetMara
    JanetMara Member Posts: 147
    edited May 2019
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    Hello Karen(KBee) and MSM--I am hoping so, THANK YOU VERY MUCH.

    I had a blood test 5/22/19 and still waiting for results,I know the lab faxes to MD office the following day and I called my MO assistant to fax the results to me but she never called me back,still hanging and praying for better results but boy o boy I have a pounding headache every day,I even hear the pulsations when I lie down.

    I just want to pray here even if I know there's a thread for prayers.

    Lord,we are your children and thank you for your goodness to us.I beg you Lord to heal us,make all the results negative,we know that nothing is impossible with you.You know everyone's cares and please pour out your blessings and miracles,we are mothers and our children and family need us.I humbly beseech you Oh Lord,please give us a restful weekend,in Jesus name,AMEN.


  • peregrinelady
    peregrinelady Member Posts: 416
    edited May 2019
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    Movingsoccermom, I just wanted to mention for new readers that your Oncotype score is predictive for low chance of recurrence only when you take the antihormonals. It looks like you stopped after 10 days due to severe side effects so your Oncotype would no longer apply. I wish you the best in your treatment.
  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited May 2019
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    Peregrine. True. However, my old MO told me with an oncotype of 3, even not taking AI's, I should be fine. My new MO specifically told me that 20% of women cannot tolerate the AI's. I could not, and neither could 2 of my Aunts who both tried and failed. Sadly, it seems that those of us who cannot tolerate the AI's are thrown under the bus as far as treatments are concerned. While I am happy for the 80%, I am annoyed and frustrated that there are no options for the 20% like my Aunts and I.

  • peregrinelady
    peregrinelady Member Posts: 416
    edited May 2019
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    Yes, I agree that the side effects can be intolerable and I believe it is almost 50% of women that do not complete the standard 5 years. Unfortunately, I am on the ten year plan since I had a high BCI score. That is what stops me from quitting even though I would love to see what it feels like to be off the pills.
  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited May 2019
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    I recurred while on Tamoxifen. My oncotype was 32, but still. I hope OS+AIs are working better. In contrast, someone else on these boards was diagnosed stage iv de novo, and actually had many years NED with Tamoxifen alone.

    Anyway, I think despite our best predictions, some cancers respond more to certain meds than others. Our individual outcomes are so different. We can do as much treatment as quality of life allows, but after that we just have to hope for the best.

    Movingsoccermom, I hope you find something that works well for you. Has your MO made any suggestions yet, or are you still waiting for test results?

  • JanetMara
    JanetMara Member Posts: 147
    edited May 2019
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    MSM-- I hope and pray that your LUNGS will be free from cancer,keep deep breathing at least 10x every time you remember(every hour if you can) and avoid exposure to pollutants(housecleaning liquid smoke) to avoid lung irritation.

    KBee and MSM--I have not tried to be on AI's so I don't know what to say-- I can only pray for your better treatment.

    God bless and watch uover us all.Hugs to everyone.

    Janet

  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited May 2019
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    Good day Ladies,

    Buttons, my MO has a plan, but we are waiting on the results from the hilar lymph biopsies. I should have those results by next Monday. I truly have never hoped so hard for some strange disease like sarcoidosis.

  • KBeee
    KBeee Member Posts: 695
    edited May 2019
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    Hoping you get results quickly. I wish there were better treatment options. There are tests now where they can look at your pharmacogenetics. I know Mayo does them. Since you have a family history of having trouble tolerating meds, perhaps that would help you figure out which ones your body would better tolerate. Just an idea......no idea if it would help.