Would love some of your thoughts!

Options
SueRelays
SueRelays Member Posts: 485
in Breast Cancer #1
So I kind of laid out my story on the "herceptin" [post), but would really love to hear some of your thoughts on choosing to NOT do chemo. I went through chemo with my first cancer in 08, and I still ended up with it spreading to my liver and needing a liver resection. When I was first diagnosed with breast cancer they said chemo wouldn't be needed....stage 1, grade 3. Lumpectomy or mastectomy. Then another test showed HER2 positive....so onc called and said herceptin, chemo and hormone pills. I'm thinking of surgery w/o chemo. I'm more worried about it coming back in my liver. Don't want to go through surgery and a year of hell, to have it return in my liver and then have given up a year of feeling good like I do now. Would like to integrate alternative with surgery possibly. Still researching, but any thoughts from you experts??

THANKS!

Comments

  • MAJW
    MAJW Member Posts: 2,510 Member
    #2
    Options
    It's such...
    A personal decision...no right or wrong...each of us has to do we feel is correct for ourselves...along with our physicians advice...
    For me, personally, I wanted anything and everything they could throw at the cancer... That was a lumpectomy, chemo and rads...I am triple negative, was stage IIa...grade 3....so that was it! No other treatment options....no Tamoxifen, Herceptin, etc. I think I would have jumped off the bridge if they said it would have helped! It's been two years since my diagnosis and so far so good....

    I understand your feelings....but only you can make the decision..and I know it's a struggle...perhaps more than one opinion from another oncologist would be able to help you in your decision.....then do what feels right for you, with no regrets down the road...

    Wishing you the best in what ever you decide..
    Hugs....
  • seof
    seof Member Posts: 819 Member
    #3
    Options
    it's personal
    It's a very personal thing, like the previous post said. I have yet to experience recurrence, but I have thought many times what I might do if it happens. I had double mastectomy (one side was....what's the word that means preventative...) because I wanted to reduce the chances of recurrence as much as possible. I had radiation and chemo, but had complications with healing from the reconstruction. Just fine now. I was one of the lucky ones that had very mild side effects from chemo/radiation. Knowing that I may not be so lucky next time, I still think I would be more likely to go with chemo than surgery. One thing about chemo is that it is system-wide, so it covers the places cancer cells might be lurking that surgery misses. Too bad that it still does not provide any guarantees. You just have to make the best decision you can with the information at hand and move forward.

    I think the idea of a second opinion might be useful...more information...2 heads are better than one...etc. If they differ, maybe a 3d to see what the majority opinion is. Do whatever you think you can live with without regrets.

    Best wishes, seof
  • poplolly
    poplolly Member Posts: 346
    #4
    Options
    Sue,
    My oncologist told me
    Sue,

    My oncologist told me that I would of course have chemo and radiation. I was so shocked at the time, I didn't even consider that I had a choice. My mother did not take chemo when she had cancer. But, if there is even a slight chance that chemo will work if my cancer comes back, then I'll do it again. That's just my thoughts, and the decision is something very personal for you.
  • SueRelays
    SueRelays Member Posts: 485
    #5
    Options
    poplolly said:

    Sue,
    My oncologist told me
    Sue,

    My oncologist told me that I would of course have chemo and radiation. I was so shocked at the time, I didn't even consider that I had a choice. My mother did not take chemo when she had cancer. But, if there is even a slight chance that chemo will work if my cancer comes back, then I'll do it again. That's just my thoughts, and the decision is something very personal for you.

    Thanks Ladies!
    I have now
    Thanks Ladies!
    I have now read 3 books, all with varying views. Am trying to gather as much info as possible and make the best decision from there. I have ab appt with my onc, a genetic counselor, and a plastic surgeon this week. An ultrasound of a swollen lymph node next week and then one last appt with a naturopathic oncologist, and then it's time to make a decision!!
  • RE
    RE Member Posts: 4,591 Member
    #6
    Options
    my 2 cents worth
    It is indeed a very personal decision and much data can be found on the side of holistic care I for one would not go that route. I have had three friends who all chose holistic care over traditional. These individuals choose not to have any chemo therapy or radiation, although they did have the surgery to remove the tumors. All three are no longer with us as they passed away less than two years after their surgeries. I totally agree it is no fun to feel sick with chemo, I for one lost two years while on treatment as my cancer returned within six months of my first treatments and I had to be treated agressively to assure it would remain at bay (while there is no true assurance). It remained at bay for 9 years when a new cancer showed up in the other breast requiring 4 more chemos and a mastectomy followed by reconstruction. It has now been at bay for 3.5 years. Had I not chosen chemo the second time I am pretty sure I would no longer be here. Both my mom and my sister had bc and they both choose chemo along surgery and rads, it extended my mom's life by 27 years and my sister by 15 years. I see cancer as a chronic illness that we always stand the chance of having return.

    I know it is not for everyone and we each have to make our own choices, I just would not feel right if I choose only to share the uplifting information we all like to hear.

    I wish you all well and hope this is received in the spirit of caring as is my intention.

    RE
  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #7
    Options
    Sorry
    Sorry you have to think about all of these difficult decisions AGAIN. Oh dear, we all dread this. Absolutely your choice after you get all the facts together.

    I'm clear right now but I suppose I would go through everything again if I had to. Mainly for my husband and two grown children. It would break their hearts if I gave in, so would probably do everything requested to beat it. Take care, good luck to you.
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #8
    Options
    RozHopkins said:

    Sorry
    Sorry you have to think about all of these difficult decisions AGAIN. Oh dear, we all dread this. Absolutely your choice after you get all the facts together.

    I'm clear right now but I suppose I would go through everything again if I had to. Mainly for my husband and two grown children. It would break their hearts if I gave in, so would probably do everything requested to beat it. Take care, good luck to you.

    My dx
    My dx was non invasive tumor 1/2 centimeter.No chemo or radiation.Just tamox. I remember first getting the dx.My doctor and a female doctor came in.I was by myself.I was told.I cried and didn't really have alot to say.Just listened.Surgery was coming up in a couple weeks. It was explained it won't spread to other parts of my body.It was local.

    I think that day it was more me thinking WOW has my life changed forever.Not the same life I had before.Many scares for years but always benign tumors since I was 20.I'm 64 now.Dx at 62.So with thinking how things were changing I did think about chemo since I wasn't sure yet.I was strong.What will be will be.I have to do whatever it takes.I will fight.I can't get down over the treatment.It could save my life.They don't do it unless it's needed.I am down enough just knowing I have this dreaded disease.I have to be strong and take what the doctors tell me I need.

    Believe me I've seen my friends go through the mill.One had to be sedated to get her chemo.Her heart raced.She was that nervous and had a right to be. The other was allergic to it. BUT she couldn't stop.She had a fast growing bc.Every time she had chemo she ended up in the hospital with IV's. The doctor said if her cancer ever comes back he is afraid when she takes chemo she might not make it.BUT she will take it on.She would have no choice.

    You have no idea how afraid I would be with chemo BUT I would take it.I am sure they would have to sedate me like they did my friend.

    Lynn Smith
  • SueRelays
    SueRelays Member Posts: 485
    #9
    Options
    RE said:

    my 2 cents worth
    It is indeed a very personal decision and much data can be found on the side of holistic care I for one would not go that route. I have had three friends who all chose holistic care over traditional. These individuals choose not to have any chemo therapy or radiation, although they did have the surgery to remove the tumors. All three are no longer with us as they passed away less than two years after their surgeries. I totally agree it is no fun to feel sick with chemo, I for one lost two years while on treatment as my cancer returned within six months of my first treatments and I had to be treated agressively to assure it would remain at bay (while there is no true assurance). It remained at bay for 9 years when a new cancer showed up in the other breast requiring 4 more chemos and a mastectomy followed by reconstruction. It has now been at bay for 3.5 years. Had I not chosen chemo the second time I am pretty sure I would no longer be here. Both my mom and my sister had bc and they both choose chemo along surgery and rads, it extended my mom's life by 27 years and my sister by 15 years. I see cancer as a chronic illness that we always stand the chance of having return.

    I know it is not for everyone and we each have to make our own choices, I just would not feel right if I choose only to share the uplifting information we all like to hear.

    I wish you all well and hope this is received in the spirit of caring as is my intention.

    RE

    Wow...I am so sorry to hear
    Wow...I am so sorry to hear about your friends. Would you mind sharing what stages they were and what alternative treatment they chose??
    You have certainly been through hell...and still smiling! THANK YOU for your post!!!
  • SueRelays
    SueRelays Member Posts: 485
    #10
    Options
    RE said:

    my 2 cents worth
    It is indeed a very personal decision and much data can be found on the side of holistic care I for one would not go that route. I have had three friends who all chose holistic care over traditional. These individuals choose not to have any chemo therapy or radiation, although they did have the surgery to remove the tumors. All three are no longer with us as they passed away less than two years after their surgeries. I totally agree it is no fun to feel sick with chemo, I for one lost two years while on treatment as my cancer returned within six months of my first treatments and I had to be treated agressively to assure it would remain at bay (while there is no true assurance). It remained at bay for 9 years when a new cancer showed up in the other breast requiring 4 more chemos and a mastectomy followed by reconstruction. It has now been at bay for 3.5 years. Had I not chosen chemo the second time I am pretty sure I would no longer be here. Both my mom and my sister had bc and they both choose chemo along surgery and rads, it extended my mom's life by 27 years and my sister by 15 years. I see cancer as a chronic illness that we always stand the chance of having return.

    I know it is not for everyone and we each have to make our own choices, I just would not feel right if I choose only to share the uplifting information we all like to hear.

    I wish you all well and hope this is received in the spirit of caring as is my intention.

    RE

    Wow...I am so sorry to hear
    Wow...I am so sorry to hear about your friends. Would you mind sharing what stages they were and what alternative treatment they chose??
    You have certainly been through hell...and still smiling! THANK YOU for your post!!!
  • RE
    RE Member Posts: 4,591 Member
    #11
    Options
    SueRelays said:

    Wow...I am so sorry to hear
    Wow...I am so sorry to hear about your friends. Would you mind sharing what stages they were and what alternative treatment they chose??
    You have certainly been through hell...and still smiling! THANK YOU for your post!!!

    Sharing
    They were both in the early stage 2, the third I am not sure of the stage I think he was a stage 3. One of the ladies who was an early stage 2 was a fan of Colloidial Silver, a diet free of sugar and vegetarian as well as over the counter vitamins she had other alternative therapy she traveled out of town for but in the end was looking to have chemo but too much time had passed. I have kept her e-mail asking for prayer when it returned as a reminder to myself to be diligent as I loved her greatly and miss her, her choices ended her life and she never got the chance to see her 7 beautiful great grandchildren. Here is her e-mail:

    "My breast cancer has moved it is now in the left
    lateral 8th rib,right lateral 3rd. rib, left superior
    sternum,left scapula at the inferior glenoid fossa,
    T-7, left T-12, right L-3 and left superior sacroiliac
    joint.
    I have been off my diet for a little over 6 months
    and was only getting my blood checked and not the
    bones. So..... now I am on another rough road, but
    with prayer and proper eating, meds etc. "

    The second gal was my pastors wife and I do not know the details beyond diet and supplements that she took in lieu of chemo. In the end she opted for chemo as her cancer spread as well, sadly as I stated it was only a matter of time and they were just giving her more months with the chemo at that point because she had waited too long to get the chemo.

    The third person went to a resort type place in Mexico where they treat cancer patients with alternative medicine, it did nothing for him and he passed relatively quickly.

    I do not have a problem with alternative medicine in conjunction with conventional which is tried and proven to be helpful, I just have not seen anyone who went the alternative route that did well.

    My best to you,

    RE
  • SueRelays
    SueRelays Member Posts: 485
    #12
    Options
    RE said:

    Sharing
    They were both in the early stage 2, the third I am not sure of the stage I think he was a stage 3. One of the ladies who was an early stage 2 was a fan of Colloidial Silver, a diet free of sugar and vegetarian as well as over the counter vitamins she had other alternative therapy she traveled out of town for but in the end was looking to have chemo but too much time had passed. I have kept her e-mail asking for prayer when it returned as a reminder to myself to be diligent as I loved her greatly and miss her, her choices ended her life and she never got the chance to see her 7 beautiful great grandchildren. Here is her e-mail:

    "My breast cancer has moved it is now in the left
    lateral 8th rib,right lateral 3rd. rib, left superior
    sternum,left scapula at the inferior glenoid fossa,
    T-7, left T-12, right L-3 and left superior sacroiliac
    joint.
    I have been off my diet for a little over 6 months
    and was only getting my blood checked and not the
    bones. So..... now I am on another rough road, but
    with prayer and proper eating, meds etc. "

    The second gal was my pastors wife and I do not know the details beyond diet and supplements that she took in lieu of chemo. In the end she opted for chemo as her cancer spread as well, sadly as I stated it was only a matter of time and they were just giving her more months with the chemo at that point because she had waited too long to get the chemo.

    The third person went to a resort type place in Mexico where they treat cancer patients with alternative medicine, it did nothing for him and he passed relatively quickly.

    I do not have a problem with alternative medicine in conjunction with conventional which is tried and proven to be helpful, I just have not seen anyone who went the alternative route that did well.

    My best to you,

    RE

    Thank you so much for
    Thank you so much for sharing this! Definitely is something to think about!
    You read so many success stories on treatments similar to what you just described :(
    I have 3 beautiful daughters and no grand chidlren yet, but am anxiously awaiting the day that this Italian can teach my grand kids how to roll meatballs :)!!!
    I just seem to get more confused the more books I read :(! Hard to make a decision that is based on our health/life!! But there are so many of you on this board that have been successfully treated with chemo....it's hard not to listen!!!!
  • jnl
    jnl Member Posts: 3,869 Member
    #13
    Options
    MAJW said:

    It's such...
    A personal decision...no right or wrong...each of us has to do we feel is correct for ourselves...along with our physicians advice...
    For me, personally, I wanted anything and everything they could throw at the cancer... That was a lumpectomy, chemo and rads...I am triple negative, was stage IIa...grade 3....so that was it! No other treatment options....no Tamoxifen, Herceptin, etc. I think I would have jumped off the bridge if they said it would have helped! It's been two years since my diagnosis and so far so good....

    I understand your feelings....but only you can make the decision..and I know it's a struggle...perhaps more than one opinion from another oncologist would be able to help you in your decision.....then do what feels right for you, with no regrets down the road...

    Wishing you the best in what ever you decide..
    Hugs....

    This is your decision and
    This is your decision and your doctor's can give you their best advice and opinion.


    I wish you well in whatever you do.


    Leeza
  • RE
    RE Member Posts: 4,591 Member
    #14
    Options
    SueRelays said:

    Thank you so much for
    Thank you so much for sharing this! Definitely is something to think about!
    You read so many success stories on treatments similar to what you just described :(
    I have 3 beautiful daughters and no grand chidlren yet, but am anxiously awaiting the day that this Italian can teach my grand kids how to roll meatballs :)!!!
    I just seem to get more confused the more books I read :(! Hard to make a decision that is based on our health/life!! But there are so many of you on this board that have been successfully treated with chemo....it's hard not to listen!!!!

    Hugs!
    Sue, chemo is harsh I know but it is doable and it is a means to get you to those grand children and that meat ball rolling. I was first dx when I was 40 and my kids were young teen agers, 3 cancer battles, 28 rounds of chemo and 16 weeks of rads later I am the very proud grandma of 3 beautiful little ones (click on my name to read my story or see my photos) a wonderful son in law and a wonderful daughter in law to be. I have had 14 years that would not have happened had I choose not to do the chemo when it came back in 98 right after treatment (I was considered a stage 4 at that time). It was well worth it to me to be sick for most of two years for the 14 I have gotten so far and of course for the wonderful little grand ones who roll tamales with me, wash dishes with me, fly kites with me and fill my life with joy and purpose (yes my husband does the same for me LOL don't want to leave him out).

    Ultimately it is your life and your choice only you can weigh the benefits to you, I truly hope you will reconsider chemo, the proof is in the pudding.

    Much love and hope for a healthy and happy future,

    RE
  • Alexis F
    Alexis F Member Posts: 3,598
    #15
    Options
    SueRelays said:

    Thank you so much for
    Thank you so much for sharing this! Definitely is something to think about!
    You read so many success stories on treatments similar to what you just described :(
    I have 3 beautiful daughters and no grand chidlren yet, but am anxiously awaiting the day that this Italian can teach my grand kids how to roll meatballs :)!!!
    I just seem to get more confused the more books I read :(! Hard to make a decision that is based on our health/life!! But there are so many of you on this board that have been successfully treated with chemo....it's hard not to listen!!!!

    Sometimes tv, books, the
    Sometimes tv, books, the internet can all scare us to death. Rely on your doctor's opinion and do what you feel is right for you.


    Good luck!


    Lex

Discussion Boards