How Did You Find Your Recurrence/ Mets

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BarbN
BarbN Member Posts: 15
edited June 2014 in High Risk of Recurrence or Second Breast Cancer
Hi all. I finished treatment in December 2006 and am now told that I am to tell the doctors if my cancer recurs. I have a 20% risk of recurrence. I have no idea if there is cancer in there or not.

Anyone who has mets or has had a recurrence, how was it found?

Thanks very much

Barb
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  • badboob67
    badboob67 Member Posts: 2,780
    edited April 2007

    I don't understand...the doctors expect YOU to tell them if the cancer recurs? I suppose what they mean is if you find any lumps or have any unusual pain or symptoms that last a week or more. I have bone mets and had significant pain for a number of years before diagnosed with bc and mets at the same time. Some people with bone mets do not have symptoms. I would think that you should keep up with regular breast self-exams, annual mammograms, and bring any unusual symptoms up with your doctor. Regular CT, PET, and bone scans are not usually done in the absence of symptoms.

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  • mkl48
    mkl48 Member Posts: 350
    edited April 2007

    Was your BC missed on mammo and US as many are?Beth

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  • BarbN
    BarbN Member Posts: 15
    edited April 2007
    Hi, yes my tumour was missed on mammogram. I should have explained, they said they don't do regular screening for recurrence (other than yearly mammo), they rely on me to tell them if anything feels unusual. I guess I'm wondering if there are symptoms for lungs, liver, bones, brain mets... and if by the time there is pain or symptoms, is it early stage or late?



    Barb
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  • cfrie
    cfrie Member Posts: 19
    edited April 2007

    Hi Barb - I have no advice, I actually have basically the same question. I finished up with chemo and then rads, and have my first follow-up with my oncologist this week, and I have the same question are there symptoms for mets.. and if the symptom is pain are you talking later stage by then? I'm guessing your doctor has not given you specific guidelines as to what to be on the lookout for. My doctor hasn't either, but she said that we will go over all that during the first follow up.

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  • Lass
    Lass Member Posts: 8
    edited April 2007
    Hi Barb,
    I think we all wonder how we will know if we get mets and what the symptoms will be. I have a friend who was diagnosed 4 years ago with stage 3 IDC, had a mastectomy, chemo and radiation, felt great and all her checkups were normal. Last Fall she developed a cold and a cough that wouldn't go away. Her GP recommended she go and see her onc who ordered a chest Xray and a PET scan. She has mets in her lungs and liver and is now undergoing chemo.
    Any persistent symptoms or new lumps or bumps should be checked out. Cfrie, mets are considered stage 4.
    Hope this helps.
    Lass
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  • BarbN
    BarbN Member Posts: 15
    edited April 2007
    Hi Lass, that's scary. I guess we just need to find a way to live with the unknown. I'm having a hard time, hopefully it will get easier as time goes by.
    Cfrie; my oncologist has not gone over it, I did go to a lecture given by another oncologist, he basically said anything different, daily I have 'different' aches and pains.

    Barb
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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited April 2007
    Hi Barb,
    My mets is in my spine on the 5th lumbar. I had a sudden onset of pain and went ER and recived xray and they found a mass. Hind site, I had been having a hard time when on my feet all day ( being really tired and legs ached) for about a month prior. I have arhtritis in same spot and had been blaming it on that. I am taking Aromasin and Zometa IVs as treatment.
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  • Snarky57
    Snarky57 Member Posts: 20
    edited April 2007
    Hi ladies -- this is how I found my recurrence. Following chemotherapy, I got my blood/tumor markers tested every three to four months. I had a slight elevation in the markers in early December but no physical symptoms. The doctor said that we could wait another six weeks to test them or we could do a PET scan right away. Within a few days, I got the report back and it indicated a recurrence. I have just completed 3 rounds of chemo.

    I understand that some recurrences occur without an elevation in markers so you might want a yearly scan. I would not wait for physical symptoms to present themselves!

    Hope this helps.
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  • rubytuesday
    rubytuesday Member Posts: 2,248
    edited June 2007
    Mod notified....changing back subject line.
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  • GoldenEyes
    GoldenEyes Member Posts: 180
    edited June 2007

    I had swelling on my left side.... my arm. hands, fingers and under my arm.....thats when I found out, I had a recurrence.....I went through chemo all last summer, still on Herceptin.... I do have question, I have been having... some soreness and tenderness on the same side. what are chances of there being another recurrence??

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  • jdash
    jdash Member Posts: 754
    edited June 2007
    this is all so upsetting to me- the docs tell me no scans- i too was stage 3- had chemo first and then surgery and my pathology report after surgery was perfect
    now all i have to do is see when a pain or symtom lasts longer than a few weeks- well right now i have some congestion and pressure in my chest- before bc i would have never thought anything of concern but now everything is reason for alarm!!!! i wish there was a better way to know what was going on

    julia
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  • 5graces
    5graces Member Posts: 99
    edited July 2007

    Julia, My onc also told me no scans or tests unless symptoms arise (I finished treatment Dec. '06) So at my last 3 month check-up in May she listens to my chest and says let's schedule a chest x-ray in 3 months. I too have a little congestion and slight cough but I didn't tell her and I'm thinking she must have heard something in my chest? I didn't start to worry until I got home, but surely if she had thought there was a recurrence she would have scheduled x-ray sooner than 3 months. I'm thinking now that maybe it is caused from radiation, maybe? and she's just waiting to see if it goes away. She is a very thorough Dr. and I really think if she had thought it was cancer she would not be waiting to check it out. My Original diagnosis was 1 cm tumor, grade 1, 2 pos. nodes (1 with extranodal extension) er/pr+ and her2-. I had lumpectomy, 8 rounds chemo, radiation and am now taking Femara. I have seen listed on Femara se's lately that it can cause cough and chest discomfort also.

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  • southernchick
    southernchick Member Posts: 52
    edited July 2007

    I was reading this post, which is pretty scary...but don't know any original dx. Was any here with mets originally dx with stage I w/no lymph node involvment?

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  • JerseyGemini
    JerseyGemini Member Posts: 98
    edited July 2007
    I was originally stage 1 (8mm, grade 1, ER+/PR-,HER2-) with all negative lymph nodes. Was diagnosed Stage 4 this past April with one met to the rib. My onc. never did follow up scans because i was so early stage and because it is not standard to do follow up scans. I had hurt my ribs cleaning out my mom's old room and thought I tore cartilage. Was going to chiropractor and pain went away in 8 weeks or so. I mentioned it to my surgeon during regular follow up and that led to scans which led to diagnosis. So I had pain from injury but it did go away by the time I found the met. Also, my tumor marker was very very low...range is 0-40 and mine was 6. So if I didn't have that injury and happen to have follow up appt. at the same time, who knows when I would have found it.

    I am now on Femara and zometa and have had my ovaries removed. I have zero pain from the met. Very weird.

    Tess
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  • KimRI
    KimRI Member Posts: 35
    edited August 2007
    Tess, Just like you, I was taking my kids xmas presents out of my hiding spot, wrapping and putting them back. Next day, I felt like I had pulled every muscle in my back. I went to the ER the next day because I had severe stabbing pains in mid back and the xray showed nothing. I went to my plastic surgeon because I thought maybe I had undone something that he had done(lat flap surgery 1yr. earlier). He treated me for 1mth with different pain meds. We just blamed it on pulled muscles. Finally the pain was just about gone and I went to my Onc. for my 4mth check up. He sent me for a bone scan "just in case but I don't think anything will be there is what he told me". Found out the stabbing pain was 2 of my vertebra collapsing from cancer, 2 lower vertebra had tumors and liver had several lesions.

    I was originally diagnosed in 1/03 Stage 2B with 1 of 6 nodes positive. Had mast.,chemo, radiation, reconstruction.
    I always questioned, should I have any testing now that my treatments are over???? He always said no need. I should have been persistant since I was only 33 at the time. If I hadn't hurt my back to begin with I don't think I'd be here today.........I thank God every day that I am here. I am proof that you can survive a recurrence. I've been in treatment for 16mths and have been in clinical remission, feel great for 10 mths now!!!!!!!

    They say that you're suppose to wait until you have symtoms.....I think that's bull. If I had had some kinds of scans....maybe it would have gone to just my spine, or just my liver.......I know I can't stop a recurrence, but maybe I could have caught it sooner. I guess what I'm trying to say is DEMAND some kind of test every 3-6mths. I went 3YEARS with NO testing.

    Kim
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  • mkl48
    mkl48 Member Posts: 350
    edited August 2007

    Current wisdom does not support finding mets earlier has an impact. As newer more effective target treatments come on line this may change. Mamm had a report that brain mets should be looked for in all stage 3 esp herceptin positive so that selective gamma knife could be used to extend life. More infuriating to me is that many drugs which might prevent mets if used earlier have to pass through first testing on mets and then are brought forward-Tamoxifin, AI's Taxanes. Herceptin, Avastin to name a few.Abraxane which may be even more effective is still "approved" for met disease unless proven allergic.A new biological useful in prostate may not have the financial backing for next testing for BC. The FDA is going backward. Beth

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  • JerseyGemini
    JerseyGemini Member Posts: 98
    edited August 2007
    Hi Kim --

    I know the overall survival stats for finding a recurrance early might not be beneficial but my ongoing debate with my oncologist was that if the cancer came back I didn't want to deal with crushed vertebre at the same time as I was dealing with the fact that the cancer was back. I am having a hard enough time dealing with this diagnosis...I don't know how I would be handing it if I had to figure out how to avoid breaking my back or how to heal a broken arm, etc. I found it "early"...just one spot on my rib that didn't even show up on an xray because the bone was not damaged enough. I know that my overall survival stats would be the same if I didn't find anything for another year when my rib broke in half but why deal with a broken rib? I also think with all of the new treatments and targeted therapies, they will eventually figure out that it's best to find stuff early. I read alot of things saying that treatments work better with a "low tumor burden" too. It's just doctors follow the "protocol"..i'm not a fan of protocol...to me it doesn't work.

    Tess
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  • KimRI
    KimRI Member Posts: 35
    edited August 2007
    I totally agree......We know we can't prevent a recurrence, but I feel isn't it better to catch it 1-2yrs. into it instead of 3 like me?????? It just amazes me that being so young(33)at the time, that there wouldn't be closer monitoring of me after my initial treatments were done. Oh well.....

    I thank God every day that I have responded so well to all my treatments so far. NED for 10mths. now from having a liver with several lesions & 4 diseased vertebra.

    Keep your chins up everyone and just keep on going!!!!
    Kim
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  • JerseyGemini
    JerseyGemini Member Posts: 98
    edited August 2007
    I was 30 at first diagnosis (35 now) and they still said no regular scans. It's not "protocol", the statistics show...blah blah blah. I would love a creative thinking onc. that says lets just do them to be safe/make you feel better/head off any injuries...screw the protocol.

    Anyway, that is TERRIFIC that you are NED for so long with liver mets. My onc. has someone who has been NED for 13 years on the same drug..he said he's afraid to take her off of it.

    Stay strong :-)

    Teresa
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  • Stack
    Stack Member Posts: 157
    edited September 2007

    i thought if you had mets it was treatable but not curable, is that right? why do they automatically stage you at 4 when mets are foound? and how can you be ned if you have mets? sorry for all the questions, i am scared of mets and i just dont understand it.

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  • Valeriex
    Valeriex Member Posts: 18
    edited September 2007

    I am not metastatic.  I just had an MRI 2 weeks ago because I had had 2 months of unusual pain in my hips and back.  My legs actually went numb more than once. Thankfully, it is not cancer but something else that I need to figure out.

    But I think that we all deserve to know when and if we have mets.  Wouldn't you make some decisions in your life differently?  Would you get pregnant with the 3rd child if you knew you would be fighting mets?  Would you start to build the new house or take on a new job or would you just buckle down and get ready for the big cancer fight again?  I think that we all have to live our lives somewhat differently in the face of cancer.

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  • juli0212
    juli0212 Member Posts: 1,415
    edited September 2007

    I have the same question...out of chemo/rads as of Feb.07, and my oncologist cannot tell me ANY prognosis at all.  Mammogram was fine August '07...but said radiation was still retracting my partial mastectomy scar...bone scan and CT scans beginning of Oct...yes, what ARE we to look for for recurrences?  (I also was on a clinical trial using Gemzar, which is used NOW FOR recurrences, that was added to my chemo protocol meds).   This is a very good question...!   Thank you...juli  (Stage II, IDC, SND, EST+, on tamoxifen now)

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  • sherry7
    sherry7 Member Posts: 200
    edited October 2007

    better yet, DCIS stage 0, two years survival and today I get a report saying most likely mets to the lungs, three spots seen on cat scan...what now?  Hope you well soon

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  • celia088
    celia088 Member Posts: 2,570
    edited November 2007

    Sherry,

    I sent you a PM.

    hugs,

    celia 

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