Will We ever truly be told were "Cancer free?"

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renee616
renee616 Member Posts: 181
in Breast Cancer #1
I had a mastectomy to remove a pea size tumor with borders. 3 lymph nodes were removed with 2 being positive. 7 of 8 rounds of chemo completed. I meet with a rads Dr later this week. I was excited to only have 1 treatment left. The Dr looked over my chart and the fact that i'd only had 3 lymph nodes removed and said they used to take out more but that caused alot of problems. soooo is that a bad thing I asked? Is there still possibly cancer in there? The surgeon said he did'nt notice any other abnormal or swollen looking ones while they were in there. My understanding was that the cancer stopped at lymph node number two.....Is it possible that cancer can skip to higher numbers without touching others? And How much insight will the Rads Dr give on this subject? I thought I would get to hear the words...CANCER FREE at the end of this race.....
Renee

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  • MAJW
    MAJW Member Posts: 2,510 Member
    #2
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    My understanding...
    My understanding is this....as explained by my 3 physicians...if I remember correctly...beast "fluid" empties into the lymphatic system...the lymph nodes "catch" the cancer..one by one..I also only had 3 removed..all were clean..my understanding is that if a node is positive, then they continue to remove them one by one until they find a "clean" one...years ago they removed ALL of the underarm lymph nodes, which can cause all sorts of problems, biggest being lymphodema....my sister in law had bc 21 years ago...she had a very rare type...angiosarcoma..they removed all of her nodes..she was so lucky, she's never had a problem...but she was religious with her physical therapy and is fine today,21 years later...YEAH!

    I am two years since my dx....triple negative, stage II...my doctors consider me in remission....I am cancer free at this time...that's what women on this board call NED.....no evidence of disease...I was considered NED at the end of rads...and remain so...

    I understand your concern...you have to trust your surgeon...also the radioactive dye that is injected prior to surgery, again from my understanding, "lights up" positive nodes...so if you had two positive nodes, that's probably all that lit up and upon visual examination of your remaining nodes, they appeared normal...I don't believe that the cancer can skip a node.... But, please question your doctors until you have a complete understanding and peace of mind...we need peace of mind ..

    Now that you're ready, soon to start rads, you're on the " home stretch" in regaining your good health..
    A big hug to you,
    Nancy
  • butterflylvr
    butterflylvr Member Posts: 944
    #3
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    MAJW said:

    My understanding...
    My understanding is this....as explained by my 3 physicians...if I remember correctly...beast "fluid" empties into the lymphatic system...the lymph nodes "catch" the cancer..one by one..I also only had 3 removed..all were clean..my understanding is that if a node is positive, then they continue to remove them one by one until they find a "clean" one...years ago they removed ALL of the underarm lymph nodes, which can cause all sorts of problems, biggest being lymphodema....my sister in law had bc 21 years ago...she had a very rare type...angiosarcoma..they removed all of her nodes..she was so lucky, she's never had a problem...but she was religious with her physical therapy and is fine today,21 years later...YEAH!

    I am two years since my dx....triple negative, stage II...my doctors consider me in remission....I am cancer free at this time...that's what women on this board call NED.....no evidence of disease...I was considered NED at the end of rads...and remain so...

    I understand your concern...you have to trust your surgeon...also the radioactive dye that is injected prior to surgery, again from my understanding, "lights up" positive nodes...so if you had two positive nodes, that's probably all that lit up and upon visual examination of your remaining nodes, they appeared normal...I don't believe that the cancer can skip a node.... But, please question your doctors until you have a complete understanding and peace of mind...we need peace of mind ..

    Now that you're ready, soon to start rads, you're on the " home stretch" in regaining your good health..
    A big hug to you,
    Nancy

    Well said Nancy
    That is how I understand it as well. I was lucky, nothing detected in my lymph nodes, my sentinel nodes came back clear along with any and all of those found in my breast tissue after my mastectomy.

    It's tricky as to the wording of what to call a person in remission. Are we ever cancer free? I think the girls here have it correct, we are in remission and dancing with NED. Maybe after say 10 years of remission will I feel comfortable enough to say "Maybe I"m cancer free".

    Hugs Renee,

    Lorrie
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
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    MAJW said:

    My understanding...
    My understanding is this....as explained by my 3 physicians...if I remember correctly...beast "fluid" empties into the lymphatic system...the lymph nodes "catch" the cancer..one by one..I also only had 3 removed..all were clean..my understanding is that if a node is positive, then they continue to remove them one by one until they find a "clean" one...years ago they removed ALL of the underarm lymph nodes, which can cause all sorts of problems, biggest being lymphodema....my sister in law had bc 21 years ago...she had a very rare type...angiosarcoma..they removed all of her nodes..she was so lucky, she's never had a problem...but she was religious with her physical therapy and is fine today,21 years later...YEAH!

    I am two years since my dx....triple negative, stage II...my doctors consider me in remission....I am cancer free at this time...that's what women on this board call NED.....no evidence of disease...I was considered NED at the end of rads...and remain so...

    I understand your concern...you have to trust your surgeon...also the radioactive dye that is injected prior to surgery, again from my understanding, "lights up" positive nodes...so if you had two positive nodes, that's probably all that lit up and upon visual examination of your remaining nodes, they appeared normal...I don't believe that the cancer can skip a node.... But, please question your doctors until you have a complete understanding and peace of mind...we need peace of mind ..

    Now that you're ready, soon to start rads, you're on the " home stretch" in regaining your good health..
    A big hug to you,
    Nancy

    I agree with Nancy.....
    It will be a hard job to find someone to say 'cured' in the oncology world (I get it from people on the street all the time when they hear 5 years...) but I have been told 'cancer free' (paired with the statement 'at this time'). The tricky thing is that darn lymph system, as you pointed out...it's sooooo good with 'sharing' fluid on it's way to the waste system...and those little 'dust bunnies' of cancer go along for the ride...

    BUT I am 5 years NED and only have occasional thoughts of reoccurance now. I had the sentinel nodes (2) come back positive, and so the next set (5) were taken, and were clean...it's the least invasive way to give the best indication of where those 'bunnies' have gone....

    I agree with Nancy...look to the bright side....home stretch...ready to start living life! The lesson is to stay vigilant (I'm going to my oncologist today for a checkup) and get any suspicious thing checked out, just like you did with the first!

    Hugs, Kathi
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #5
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    butterflylvr said:

    Well said Nancy
    That is how I understand it as well. I was lucky, nothing detected in my lymph nodes, my sentinel nodes came back clear along with any and all of those found in my breast tissue after my mastectomy.

    It's tricky as to the wording of what to call a person in remission. Are we ever cancer free? I think the girls here have it correct, we are in remission and dancing with NED. Maybe after say 10 years of remission will I feel comfortable enough to say "Maybe I"m cancer free".

    Hugs Renee,

    Lorrie

    Cancer free???
    I'm not sure.Like Lorrie maybe 10 years I would feel better but I know someone who after 12 years had it come back in her bones.Hers was a very invasive cancer and she had 17 nodes positive. That's alot.

    My breast surgeon told me after my second surgery I was cancer free(clear margins).It is non invasive, local(in a wall area) and will not spread BUT I can get other cancers. I didn't need chemo or radiation.I did worry about radiation but know of at least one other person who didnt have it with my type of cancer.DCIS, Stage 0 Tumor 1/2 centimeter. I was fortunate.Early detection.

    I remember what we used to hear years ago.After 5 years we are cancer free.Not sure I feel that way now.It can be in remission for many more years and then come back. I question my doctors at times and their answer is Everyone is "different". So what happens with one person probably won't happen to another.

    I guess I feel it is there and someday it could come back but hope not.I pray for myself and others every day that it doesn't come back.HOPE my prayers are answered.

    I think we all feel our life is now uncertain. We've been dx with a life changing disease.It isn't the life we had before we were dx.

    Lynn Smith
  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #6
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    Nodes
    I had the sentinal node dye. Was under the impression they found primary, first feeder node in your personal pattern, like a tree. I only had my first node tested and came back negative hence did not need any more testing because it couldn't have gone beyond this node. My concern, depending on where cancer was etc is after bilateral, even a few pre cancer cells can be missed and enter through the chest area. Any thoughts on this. Saw a site recently where I was surprised how many bilateral ladies sadly got cancer again a few months after surgery to many, many years later. Supposed to be only one percent, have my doubts on that number.
  • katznc
    katznc Member Posts: 70
    #7
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    Doc's won't say those words
    I don't think any doctor/surgeon/onc etc will use those words. Other people use those words because they think, after treatment and the all clear sign that you are now cancer free. Everyone has cancer cells roaming around in their bodies, it just matters if they take up housekeeping somewhere. NED is about as good as it gets.

    You get the chemo/rads so that it catches any stray cells or small clusters of cells that have floated out of the nodes or are still in the nodes or other small tumors that are in there they can't see.

    I had a small tumor behind the one they found. It was only detected after surgery because I opted for a mast. No tests before saw it and I am very small.

    The good news is that many people never have a reoccurance, but in the words of the wise ones who counciled me "it is not a race, its a very slow marathon." Its what we all have to live with.
  • Rague
    Rague Member Posts: 3,653 Member
    #8
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    Unfortunately -
    at this time there is no cure for cancer. The best we get is NED (No Evidence of Disease).

    At this time, once cancer has raised it's ugly head - it's potential is always there - unfortunately. More so with some types of BC than with others.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #9
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    Rague said:

    Unfortunately -
    at this time there is no cure for cancer. The best we get is NED (No Evidence of Disease).

    At this time, once cancer has raised it's ugly head - it's potential is always there - unfortunately. More so with some types of BC than with others.

    Rague .. Perfectly stated ..
    NED -- continues to be the best TERM that our Medical profession, can offer any of us.

    I didn't know this in the early stages of my diagnosis and treatment -- but, the type of breast cancer we have, along with staging of our cancer== determines alot. Some Breast Cancers are more aggressive than others.. however, cancer is cancer no matter which way you look at it.

    I realize this does not answer your question or address your concerns - Please ask your Doctor what his clinical trials information has shown. Also, what has been his experience with his patients from the past 10 years or so.

    Best of Luck ..

    Strength and Courage,

    Vicki Sam
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #10
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    My advice
    Always hope for the best, but be prepared for the worst. Forget cancer-free. Be optimistic but vigilant.

    My ER + cancer came back after a 22 year remission--unbelievable but true. My doctors were shocked too.

    I am doing well again on arimidex and zometa, but I would be reluctant to pronounce anyone "cancer free" after my experience.
  • NJMom10
    NJMom10 Member Posts: 176
    #11
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    CypressCynthia said:

    My advice
    Always hope for the best, but be prepared for the worst. Forget cancer-free. Be optimistic but vigilant.

    My ER + cancer came back after a 22 year remission--unbelievable but true. My doctors were shocked too.

    I am doing well again on arimidex and zometa, but I would be reluctant to pronounce anyone "cancer free" after my experience.

    I wanted to hear cancer free too
    At the end of my chemo and surgery my onc said to me, "Hopefully, the chemo took care of it all." I was floored by that. I said, "Hopefully?" His response was that we can only really judge over time. The longer you go without recurrence the better chance there is that you won't get a recurrence. I was pretty deflated by this news because I always heard people say, "I'm cancer free." And I wanted to say it too! Especially after this long, arduous battle! But I think it's like some others have said. There may always be some cancer cells floating around, it's just whether they decide to grow that's the problem. So in a way you are better off than someone who hasn't had a diagnosis because docs are watching you carefully to make sure you don't get it again.

    So our friend CypressCynthia is an encouraging case. Because, yes, she had a recurrence 20 years later, but she and her docs were watching, caught it and she is doing well. As she said, be optimistic but vigilant.
  • ladybug22
    ladybug22 Member Posts: 646
    #12
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    my onc.
    my onc told me he would never tell me i was cancer free. we are all difference. good luck. hugs and love

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