I was just diagnosed with a recurrence

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Amica
Amica Member Posts: 488
edited August 2018 in Just Diagnosed With a Recurrence or Metastasis

I'm a 20 year Stage 2 survivor, and I thought I was pretty safe. I was getting yearly checkups but only with a family doctor which is all that is allowed here in Canada. I wish I had not let my guard down, and been more vigilant for symptoms of recurrence, because my doctor knows nothing. I recently discovered a swelling below my collarbone that turned out to be a 30 X 40 mm mass in my lymph node. Even my family doctor discounted the swelling, and thought it was just my pectoral muscle or a lipoma.

Thank God I got an ultrasound, which led to a biopsy which showed the lymph node is positive for metastatic adenocarcinoma of breast origin.

I vacillate between shock, disbelief, self-pity, fear, anger and hope. I was already struggling with depression and now this.

Are there any other recurrence survivors on here? or maybe I should post this on the Stage IV forum, but I don't know my staging yet.

sadly,

Amica

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2018

    Well that stinks Amica. 20 years? The gift that keeps on giving. Ugh. So sorry. Good thing you were your own advocate and had the ultrasound done. What’s with the doctor thinking it was something else but not making sure?

    Hope it’s not Stage IV but if it is you will handle it just like you did 20 years ago.

    Keep us posted.

    Diane

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  • sheila888
    sheila888 Member Posts: 25,634
    edited July 2018

    Hi Amica... I had cancer twice but it wasn't a recurrence it was new primary in the other breast.

    I was Ned for over 10 years. I know the feeling. I had micro cells in SN so I had to get chemo.

    This is the most difficult time the waiting. Here in US depending the Oncologist I've been seen mine every 6 months and he did tumor markers test every time when I was diognosed again my tumor markers were normal.....also doesn't make any sense.

    Like you said after 10 years wasn't even thinking about the beast anymore..

    Sending hugs and good luck to you.

    Sheila

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    sheila888

    thanks so much for the reply. You have my sympathy for going through all this twice. I never had tumor markers taken, maybe it just wasn't being done at the center I went to. My first go-round was in the U.S. and I was followed by my oncologist every 6 months for over a decade. But after all these years, maybe even in the U.S. I would no longer have been being seen by an oncologist for follow-up. I don't know if it would have made any difference anyway. All was seemingly well although looking back I had some symptoms perhaps, like some nagging pains, but they didn't really stand out.

    Two weeks before finding this big mass below my collarbone I had felt a very small mass just above my collarbone. I had a mammogram and ultrasound and was examined by a nurse practitioner. That lump turned out to be a blood vessel, which I now thing may have been distended by the nearby presence of the tumor. But all the tests came out clear. Nobody noted the swelling below my collarbone because I guess it did look like pectoral muscle, and that side of my body is kind of disfigured from a modified mastectomy and axillary lymph node removal with no reconstruction.

    I'm glad you are doing well,

    Amica

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    thanks Diane @ edwards750....Honestly I think there should be more awareness of the risks of recurrence. It's the thing no one wants to think about but now that I've done the research, the risk of recurrence was higher than I thought, especially for women who get breast cancer at a relatively younger age, as I did. I am so scared of Stage IV but am heartened to see women posting on here with Stage IV who have survived for years.

    And yes I was my own advocate, as we all need to be.

    There was a quote from a doctor somewhere on a breast cancer site that I was reading a day or two ago, something to the effect "that the best patients are the worst patients", meaning the patients who may be a pain in the butt, and ask a lot of questions, complain if necessary, or take up a lot of the doctor's time---thus, advocating for themselves---are the patients doing the right thing!

    take care,

    Amica

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  • sheila888
    sheila888 Member Posts: 25,634
    edited July 2018

    Thanks Amica.....Actually my second diagnosis was discovered during my yearly mammogram.

    First I had a lumpectomy but wasn't comfortable with my decision and decided to have a BMX which I have no regrets. Many oncologist don't do tumor marker test but mine does.

    I'm on Letrazole ( femara ) again for another 5 years. I guess life goes on.

    I'll come and check the boards to see how you're doing. I also got AC- Taxol the first time.

    Hugs

    Sheila 💛

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited July 2018

    Hi Amica,

    We unfortunately have a great deal in common. I was diagnosed at 38 with stage 2 cancer, metastasis in my sentinel node. Had the full meal deal (surgery, chemo, radiation and 8 years of hormone therapy) but despite this was diagnosed as stage 4 after almost 16 years. I always knew the risks were higher for those of us diagnosed at a younger age but it was still a shock after all that time.

    Don’t feel you weren’t vigilant enough. You threw everything you could at it when you were originally diagnosed. I don’t believe that there was anything you could do to prevent the recurrence, either here or in the US. Hopefully you will have a clearer picture of the situation soon and a treatment plan in place.

    Sending positive thoughts from the other side of the country.

    Pat.

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    Pat @Sadiesservant

    Hi. Thank you so much for your reply. Yes, we do have a lot in common, diagnoses, treatments, yes. We have travelled much of the same path.

    You have been through a lot. How are you doing?

    No I don't think I could have prevented the recurrence. I think so much of this is genetic. I just wish I had noticed the swelling sooner before the growth became so big (30 X 40 mm). I usually did my breast exams lying flat with the opposite hand under my head, and in that position the area below the collarbone is obscured by muscles and ligaments. And lying down this lump just dissolves into the collarbone area, you cannot feel it. And I was always feeling for a small lump the size of a pea, not a broad swelling that pretty well has the dimensions of half my hand. It's probably been there for years. But I still feel like such an ignoramus.

    I'm just in shock. But I'll adjust, I have to.

    sending you hugs my West Coast sister in struggle & strength,

    Amica

    P.S. If that's your dog, he/she is beautiful !


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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited July 2018

    Yes, that’s Sadie. She runs the house...

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    as she should....

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  • oxygen18
    oxygen18 Member Posts: 164
    edited July 2018

    Amica,

    So sorry about the recurrence. I hope you keep us posted as you learn more. I'm sending a care package of good wishes and hugs and strength.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2018

    I love the Dog - Sadie too! I’m a monster dog lover and animal rights advocate. Btw our fur baby runs the house too.

    My sister had a recurrence after 4 years. Local on the chest wall where she had her MX. She had 33 rounds of radiation and gets shots every month. Idk for how long. She lives in another state and is very close to the vest about personal things. She had ILC. I had IDC 7 years ago.

    I also have a friend who had a recurrence 2 years out. Doctors found it when her tumor marker numbers kept going up. I never had those done. My oncologist said they had too many false positives plus I had such early stage non-aggressive cancer.

    Sorry for you ladies. It seems we can never totally get rid of the beast. Please keep us posted.

    Diane
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  • Amica
    Amica Member Posts: 488
    edited July 2018

    oxygen18, edwards750

    thanks. I have done some animal rescue, and feral cat trap/neuter/release/feed, both my cats are rescues, I'm a big animal lover, as are all the best people lol

    I never had tumor markers done.

    take care,

    Amica

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2018

    I had a recurrence less than 2 years after my initial diagnosis. So far, I'm still NED after treatment.


    My mom had a new primary about 22 years after her initial diagnosis. She's doing well too. :)

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    Kbeee

    thanks Kbeee for your input. So glad you are NED !!!

    My recurrence is not a new primary, it is metastasis, so I hope to know more in the future.

    take care,

    Amica


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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2018

    Amica, Do you have staging yet? I am sorry you are dealing with this.

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    KBeee

    thanks for your support.

    No, I haven't even gotten in to see an oncologist yet! Not even close to staging. No tests, no scans, nothing. It has been several weeks since the ultrasound showing a suspicious mass by my collarbone, and by the time I see an oncologist which is scheduled for August 9, it will have been nearly two months. I had biopsy on July 13th, I got partial results after a week, they are telling me full biopsy results can take "a month or more." I have been raging about the slowness of the Ontario healthcare system in the Rant section of these boards. I am very upset and frustrated by the delays.

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2018

    I would be furious beyond words. I am just reading this. I am sorry it is taking so long. That is inexcusable. My only advice is to be the squeaky wheel and call often. Thinking of you and hoping you get answers soon.

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    thanks beautiful KBeee for your supportive comments.. It means a lot to me. I think I need to stop ranting about the slowness of the Ontario healthcare system on the Rant section of these boards or all the Canadians are going to hate me lol

    I have kept calling. Today my doctor was not in. And this will be a long weekend in Canada, a Worker's Civic Holiday, in which everything will be closed. I am desperate to get my biopsy results in time for the August 9th appt with the oncologist. I don't know how we can proceed without them. But we shall see.

    I want answers re staging, but mostly I just want TREATMENT. There are many women on here who have survived and even flourished for years with advanced cancer once they receive the appropriate treatment. Like I have on a T-shirt "Where there is life, there is hope."

    My body is still so sore from the biopsy by my collarbone, much more so than previous biopsies I had in the breast area. He took 10 core samples, too many in my opinion, like being stabbed 10 times. I spend a lot of time in bed trying to support my swollen sore shoulder and collarbone area, there's pain in my arm, neck, chest, ribs,and back---everything hurts ! lol This whole experience so very different from my first.

    I hope you are feeling OK on the Femara.

    peace and hope,

    Amica


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  • JoE777
    JoE777 Member Posts: 628
    edited July 2018

    please don't beat yourself or the doctors up. Once we're diagnosed we are forever the patient. I'm 5 years away from the the first time with the best results. Always thought of a recurrence in the breast or chest but mine is a distant metastasis in my sacrum. The good news - there are new treatments and medicines now and some close to release. Time is now our friend. Each holds the possibility of extending our lives. Focus your energy toward your treatment choices and quality. 1000's are walking with you. Hugs !

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  • Amica
    Amica Member Posts: 488
    edited August 2018

    thank you JoE777 for your positive thoughts.

    I just can't get over the fact that I had the biopsy on July 13 and am not seeing an oncologist until August 9. That is simply too long a delay.

    take care,

    Amica

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  • Amica
    Amica Member Posts: 488
    edited August 2018

    All this waiting is too much. I still don't even have complete pathology results. :(


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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2018

    Hugs Amica. I hope you get some answers and some care soon.

    I don't know about you, but I was not prepared for the logistical nightmare aspect of BC. Since diagnosis I've spent innumerable hours on the phone, on hold, fighting with my insurance company, doctors offices, etc., etc., just fighting to get the care I need. It just never ends. As if we don't have enough to deal with already. It makes me so angry. These kinds of problems just add insult, stress, and turmoil when we should really be focused on treatment and healing as best we can. I hate it... there are just no words sometimes. My heart goes out to you.

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  • Amica
    Amica Member Posts: 488
    edited August 2018

    Hi buttonsmachine

    I couldn't agree more on the "fighting to get the care" part.

    I have my first appointment with an oncologist on August 9th, and I swear if she asks "do you have any questions?", the first question I feel like yelling, screaming, bellowing is , "Why is that I have a metastatic lump the size of a lemon protruding from my chest and no one seems to be treating this with ANY URGENCY?!!! Where the hell is my f*ing medical care?"

    I also feel like asking her, "Is this Cancer Centre going to be fighting for me or against me?" Because so far I have felt like it's been one long fight, where I've had to do all my own advocacy, endless phoning, scheduling, checking on my referrals, trying just to get a set of freaking instructions for aftercare after the biopsy, checking for my pathology results---it's been a nightmare.

    Thanks for your supportive comment buttonsmachine.

    Amica



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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2018

    Amica, I am sorry you are having to wait so long. Your question you want to scream is very appropriate. Be direct about it! Let us know how your apppointment goes.

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  • Amica
    Amica Member Posts: 488
    edited August 2018

    thanks Kbeee, I appreciate the support. I'm more ferocious on these boards then in person lol; I think I'll find a tactful but direct way to ask that question though :) Will keep you guys updated.

    peace,

    Amica

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  • Piksie
    Piksie Member Posts: 161
    edited August 2018

    Amica, I wish there was a Like button here. Your ferocious comment made me smile. Thanks!

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2018

    Amica...I get it. I am that way too. It is hard to question a doctor at a prestigious medical facility. Doing so saved my daughter 16 years ago, and it gave me the best chance I have at surviving cancer 3 years ago, so I am getting better. I do better when I have clear wording ahead and can predict their responses. That did not help me at prestigious medical center 3 years ago, because their minds were made up before I entered the room, but that's what is so valuable at the ability to seek other opinions (if needed).

    I'd probably word it similar to.....

    "I appreciate your efforts to save me from the toxicities associated with chemotherapy. I understand that hormonal therapies are very potent against my type of cancer. I also understand that thus far, my cancer has not behaved as expected, and may not behave as you expect in the future. It has already not responded to Tamoxifen, and came back despite aggressive surgery with clear margins. If we're going to proceed with hormonal therapy only as the systemic treatment, I would like to use all tools available to make sure this is the most appropriate choice. The Oncotype (or Mammaprint) would give us solid information to make sure we aren't making assumptions, and are in fact, making the most appropriate decision"

    I said that assuming that your recccurance is a local recurrence. I see your profile says that it is a metastatic recurrence. If in fact it is metastatic and has spread, then the standard is typically (but not always) to start with hormonal therapy first. Either way, your doctor needs to be able to give you a clear rationale for his/her choice ... why is this the best choice for you in your particular situation. They should be able to tell you.

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  • couragement
    couragement Member Posts: 114
    edited August 2018

    Okay Amica! Tomorrow is almost here. I am so grateful to see this Thursday coming soon. I am thinking of you with great hope that they will be clear, organized, and smart! And of course, compassionate!

    Best of luck tomorrow. I hope you get some sleep tonight. We are all standing by to hear how things go.

    Be well friend. xoxxo


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  • oxygen18
    oxygen18 Member Posts: 164
    edited August 2018

    Amica, how are you doing today?

    Thinking of you and sending good wishes.

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  • Amica
    Amica Member Posts: 488
    edited August 2018

    thanks friends

    I got through the appointment. I don't know much more than I did before, except I did find out I'm HER2 negative. Otherwise the main conclusion was (surprise!) more tests: bone scan, and a not quite full-body CT scan. Staging, prognosis and treatment plan all still to be nailed down.

    I'm beat. I'll catch up more later.

    thanks again for your support...you all are the best!

    Amica

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