Any advise I can give my mom?

Kaleena
Kaleena Member Posts: 2,088 Member

Hi All:

My 80 year old mother (soon to be 81 in November) was just diagnosed with IDC (HER2 positive).   She already has a skin lesion and one lymph node that shows up on the scan.  We met with a surgeon and he suggested that she do chemo and herceptin first and then surgery.  Although he did say she could do everything he suggested or one or two of the things.

Here's the thing, my mom really doesn't want to do anything.  Right now she lives alone, drives herself and she doesn't want to lose that.  The surgeon says if she does nothing, she still can do what she is doing maybe for at least a year or two but by then she will probaby need some sort of help.  He told her it is aggressive if she does nothing and once it gets into her system, well... but that the herceptin would greatly extend her life.   She has no other medical problems other than being overweight.

She is afraid of the chemo and that it will cause her to need assistance at home.   She said it was easier for me (I am from the uterine board) because I had my husband.   My mom keeps asking me for advice, but I do not know anything about breast cancer treatments so I am seeking out your adviced on what side effects are.

1.   What is the side effect of herceptin?

2.   What is the side effect of radiation?

3.   What can she expect after surgery?

I know everyone is different but if I could get some general idea.  Or any questions we should ask when we finally meet with the oncologist on Tuesday.   The final choice is my moms and I tell her that.   I jsut want to give her information so that she can make her decision from.

Sorry I am rambling here.  Thanks for listening.

My best to you all.

Kathy

Comments

  • SIROD
    SIROD Member Posts: 2,194 Member
    What I know.

    I recommend Dr. Susan Love's breast book.  It has all the basic information while not making it scarry.

    Radiation for me was not bad.  I drove myself in '99 every day which was a total of 2 hours of driving.  I am not certain that I am up to doing it myself at age 68.  I might ask for drivers from local organization.

    Chemo well none of it is easy.

    I am negative for her2, so I can't give you personal information on that one.  Hopefully someone will give you information.

    Best of luck to your mom and you.

    Best,

    Doris

     

  • New Flower
    New Flower Member Posts: 4,294
    SIROD said:

    What I know.

    I recommend Dr. Susan Love's breast book.  It has all the basic information while not making it scarry.

    Radiation for me was not bad.  I drove myself in '99 every day which was a total of 2 hours of driving.  I am not certain that I am up to doing it myself at age 68.  I might ask for drivers from local organization.

    Chemo well none of it is easy.

    I am negative for her2, so I can't give you personal information on that one.  Hopefully someone will give you information.

    Best of luck to your mom and you.

    Best,

    Doris

     

    Hi there is a thread on her2 positive treatment

    Hi Kaleena

    the good news is that her mom' cancer is still small and she dies not have any health conditions. There is a ongoing discussion on Her2 treatment. If she tolerates it well maybe there is not need for a traditional Chemo for her and she will continue her lifestyle. If she go with lumpectomy first she will be off driving for a week or two however have no problem at home giving 1-2 days for a recovery from the surgery 

    radiation is very reasonable . Most people are able to drive themselves to the treatments and maintain normal lifestyle 

    no treatment at all sounds scary to me as dealing with mets and further progression is tough and will need assisstance.

    good luck and let us know

    G

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    1) First off, herceptin is

    1) First off, herceptin is not actually exactly chemo.  It is a targeted antibody that really knocks the socks off of most her2neu + cancers.  As I said in a previous post, I went from "231 liver lesions" to none in 3 months on herceptin.  As to side effects, the main one is a reversible decrease in left-sided heart function.  Your mom will have a MUGA (heart scan) every 3 months to avoid this.  Because it is reversible, you are usually given a herceptin holiday and then you get right back on it.

    I have had no problems on herceptin after about 1 1/2 yrs until recently, so I am on a holiday.  However, I have to admit I am not sure my decrease in heart functioning is at all due to herceptin, because I have new mets and new problems and have been ill.  Really, herceptin has been much, much easier for me than any chemo.

    If he add a true chemo drug such as taxotere, it is harder.  Taxotere was hard on me but it was for 6 treatments only.  The dietitian had me living on Ensure because my appetite really took a dive on taxotere.

    2) Radiation is also so targeted that the side effects are minimal.  The worse thing, for very fair people, can be a very nasty sunburn.  I am olive complected and just had a mild burn.  Ask the radiation onc about skin care recommendations.

    3) The surgery is usually no longer very hard, but, with your mom's age, I would expect a longer recovery.  What might take a week or two for a 61 year old like me, may take 2-4 weeks for her.  But I'll tell you, there are some tough older ladies out there.  My friend's grandmother had a hip replacement, refused physical therapy, and then went home right as rain.

    I would really ask the onc about if he thinks some therapies are too hard on her.  My onc is usually brutally honest. Wink

    I love that you are being so proactive for your mom!  What a wonderful daughter!  Good luck and big (((hugs))).

  • button2
    button2 Member Posts: 421
    The did the same treatment

    I did the same treatment (surgery, radiation, Herceptin) and it really wasn't too bad. The only thing is that your mother is 80 and things might be a bit more difficult at that age. Doing nothing doesn't sound like a very good idea as she will just need help further down the road as the disease progresses. She probably needs a few days to digest all this information. A diagnosis like this is such a shock. Let us know what she decides to do...

    Good luck to you both,

    Anna

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Thank you!

    Thank you Doris, G, Anna & CC for your repiies.  You all are so sweet and I wish you all the best.   I think it is clear that she will not do chemo  I think for her age it may just be too rough on her and given the fact that she is alone I would worry about her and she would not want anyone to stay with her.   I don't live far from her.   However, I am still dealing with issues of my own at the moment.

    I will tell her aboout the herceptin and the radiation.  I surely would like them just to remove the mass at this point too.   Being laid up a couple of days I know she can handle it and she also has a sister who indicated would help her.

    My mom is fair skin so the radiation would probably burn more on her skin.   Her tumor at this time is larger than 2.5 but smaller than 5 cm and the skin lesion is about 1.5 x 2 cm.   She has not had any other body scans.  She does complain about bad bone pain in her feet for years

    Thanks again for all of your advice and suggestions.   We meet with the oncologist on Tuesday and now I can get a list of questions to ask.   I will let you know how it goes.

    Hugs.

    Kathy 

     

  • camul
    camul Member Posts: 2,537
    Kaleena said:

    Thank you!

    Thank you Doris, G, Anna & CC for your repiies.  You all are so sweet and I wish you all the best.   I think it is clear that she will not do chemo  I think for her age it may just be too rough on her and given the fact that she is alone I would worry about her and she would not want anyone to stay with her.   I don't live far from her.   However, I am still dealing with issues of my own at the moment.

    I will tell her aboout the herceptin and the radiation.  I surely would like them just to remove the mass at this point too.   Being laid up a couple of days I know she can handle it and she also has a sister who indicated would help her.

    My mom is fair skin so the radiation would probably burn more on her skin.   Her tumor at this time is larger than 2.5 but smaller than 5 cm and the skin lesion is about 1.5 x 2 cm.   She has not had any other body scans.  She does complain about bad bone pain in her feet for years

    Thanks again for all of your advice and suggestions.   We meet with the oncologist on Tuesday and now I can get a list of questions to ask.   I will let you know how it goes.

    Hugs.

    Kathy 

     

    They all gave good advise.
    Herceptin for me was the best. No real se and my liver lesions disappeared as did skin tumors. It was the only thing that had slowed the cancer. I am irish/german and very fair. I did get some burns with radiation, but drove myself, by the end of my rads I was tired, but still able to do for myself. I am younger 57 now, but would still do rads or herceptin.
    Now I am on Aromasin, a hormone blocker only and have no real se.
    Chemo was hard, and I did not function too well. I was on chemo for 2 1/2 years of weekly infusions. With breaks here and there for testing. I agree with all of the posts here.
    Wish your mother and you the best. Hard sometimes helping others when you are going thru it yourself.
    Hugs,
    Carol
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    camul said:

    They all gave good advise.
    Herceptin for me was the best. No real se and my liver lesions disappeared as did skin tumors. It was the only thing that had slowed the cancer. I am irish/german and very fair. I did get some burns with radiation, but drove myself, by the end of my rads I was tired, but still able to do for myself. I am younger 57 now, but would still do rads or herceptin.
    Now I am on Aromasin, a hormone blocker only and have no real se.
    Chemo was hard, and I did not function too well. I was on chemo for 2 1/2 years of weekly infusions. With breaks here and there for testing. I agree with all of the posts here.
    Wish your mother and you the best. Hard sometimes helping others when you are going thru it yourself.
    Hugs,
    Carol

    Thanks Carol

    Your post also helps a lot.   I just spoke to my mom again and I know for sure she will not do chemo.   My husband's aunt didn't do nothing (she was 92 when she was diagnosed) and only lived about 11 months from her diagnosis.  She had it for several years before she told her daughter.    My mom gets around better than she did at her age so I think she should do something.   

    Thanks for your wishes and hugs.   Hoping you are feeling fine and I am glad they got your port to work.

    I will give you an update once we see the oncologist.

    Kathy

  • Pixie Dust
    Pixie Dust Member Posts: 424 Member
    Kaleena said:

    Thanks Carol

    Your post also helps a lot.   I just spoke to my mom again and I know for sure she will not do chemo.   My husband's aunt didn't do nothing (she was 92 when she was diagnosed) and only lived about 11 months from her diagnosis.  She had it for several years before she told her daughter.    My mom gets around better than she did at her age so I think she should do something.   

    Thanks for your wishes and hugs.   Hoping you are feeling fine and I am glad they got your port to work.

    I will give you an update once we see the oncologist.

    Kathy

    Everyones advice sounds good

    Kathy, I had to have BMX and chemo and no radition. I had to have taxatore and no nothing else about any other chemo or meds. I do think your mother atleast needs to do something about this problem now because she is going to have a bigger problem later. At her age if she agrees to certain treatments she may have to have help for a few days. I hope that all of you can come up with the right decision that is best for all of you.    (((((HUGS)))))  Pixie Dust

  • Kaleena
    Kaleena Member Posts: 2,088 Member

    Everyones advice sounds good

    Kathy, I had to have BMX and chemo and no radition. I had to have taxatore and no nothing else about any other chemo or meds. I do think your mother atleast needs to do something about this problem now because she is going to have a bigger problem later. At her age if she agrees to certain treatments she may have to have help for a few days. I hope that all of you can come up with the right decision that is best for all of you.    (((((HUGS)))))  Pixie Dust

    Thanks Pixie Dust!
    I know she

    Thanks Pixie Dust!

    I know she is not thinking clearly at the moment and I know if she does absolutely nothing she will regret it later.  I only know that it has to be her choice and I want to give her all the information I can so that she can make a decision she is comfortable with.  It was like the surgeon said, the treatment side effects are only short term, but if she does nothing, then there will not be anything they can do to reverse it at that time.

    Thanks for the hugs.   

    Kathy

    P.S.   Everyone is so supporting here.   I can't tell you how much I appreciate it.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Kaleena said:

    Thanks Pixie Dust!
    I know she

    Thanks Pixie Dust!

    I know she is not thinking clearly at the moment and I know if she does absolutely nothing she will regret it later.  I only know that it has to be her choice and I want to give her all the information I can so that she can make a decision she is comfortable with.  It was like the surgeon said, the treatment side effects are only short term, but if she does nothing, then there will not be anything they can do to reverse it at that time.

    Thanks for the hugs.   

    Kathy

    P.S.   Everyone is so supporting here.   I can't tell you how much I appreciate it.

    Hi Kathy!

    Hope your mom does well.  A good friend had HER2+ bc back in the day before Herceptin.  When she was diagnosed, Herceptin was only approved for recurrences.   Chemo was recommended but she refused it because she has really bad reactions to drugs (had anaphalyxis during lumpectomy).  She was also ER+.  Is your mom ER+ too?  My friend had lumpectomy (which she almost didn't survive), radiation, and 7 years of Arimidex.  She was told she'd be dead without chemotherapy within 4 years.   It's been 10 years for her now.  She's still going strong.  No recurrence.

    Suzanne

    Oh, I guess that's not any advice.  Breast cancer is such a strange disease, so many variables.  From everything I've seen, Herceptin is a life saving drug for HER2+ folks and not nearly as toxic as chemo.  I think I'd get a second opinion.  At age 80 there are so many factors to consider and it seems that standard protocols shouldn't apply and/or may be adjusted in the elderly. 

     

     

  • Kaleena
    Kaleena Member Posts: 2,088 Member

    Hi Kathy!

    Hope your mom does well.  A good friend had HER2+ bc back in the day before Herceptin.  When she was diagnosed, Herceptin was only approved for recurrences.   Chemo was recommended but she refused it because she has really bad reactions to drugs (had anaphalyxis during lumpectomy).  She was also ER+.  Is your mom ER+ too?  My friend had lumpectomy (which she almost didn't survive), radiation, and 7 years of Arimidex.  She was told she'd be dead without chemotherapy within 4 years.   It's been 10 years for her now.  She's still going strong.  No recurrence.

    Suzanne

    Oh, I guess that's not any advice.  Breast cancer is such a strange disease, so many variables.  From everything I've seen, Herceptin is a life saving drug for HER2+ folks and not nearly as toxic as chemo.  I think I'd get a second opinion.  At age 80 there are so many factors to consider and it seems that standard protocols shouldn't apply and/or may be adjusted in the elderly. 

     

     

    Thanks Suzanne

    Thank you Suzanne

    Whether or not thats advice I still appreciate what someone else has done.   It says she was slightly ER+.   I know at her age anything can be risky - even going under anesthesia.   But as with anything, it is best to seek all options and then make your decision.    If you just make a rash decision, you will always have that uncertainity feeling.   

    Thanks for your advice!

    Kathy

  • GlowMore
    GlowMore Member Posts: 789 Member
    Kaleena said:

    Thanks Suzanne

    Thank you Suzanne

    Whether or not thats advice I still appreciate what someone else has done.   It says she was slightly ER+.   I know at her age anything can be risky - even going under anesthesia.   But as with anything, it is best to seek all options and then make your decision.    If you just make a rash decision, you will always have that uncertainity feeling.   

    Thanks for your advice!

    Kathy

    Something else to think about...

    Lots of good advice from all the ladies...and I will just say that since I am in my 79th year maybe I have a different viewpoint than some.   By now you realize that you are definitely not getting out of this world alive...and most of the women my age have reached a level of peace about Death.   It is all that worry and anxiety we have to go thru facing medical procedures etc that seems to be so upsetting.  You Mom has a wonderful Daughter and I know that with your help she will make the correct decision for herself...and her Family.  I don't think I would do chemo again now....but I honestly can't say that I wouldn't....because no matter how 'peaceful' I am with dying....I want to live more.   Please let us know how tomorrowo goes.

     

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    GlowMore said:

    Something else to think about...

    Lots of good advice from all the ladies...and I will just say that since I am in my 79th year maybe I have a different viewpoint than some.   By now you realize that you are definitely not getting out of this world alive...and most of the women my age have reached a level of peace about Death.   It is all that worry and anxiety we have to go thru facing medical procedures etc that seems to be so upsetting.  You Mom has a wonderful Daughter and I know that with your help she will make the correct decision for herself...and her Family.  I don't think I would do chemo again now....but I honestly can't say that I wouldn't....because no matter how 'peaceful' I am with dying....I want to live more.   Please let us know how tomorrowo goes.

     

    Thank you

    Dear GlowMore:

    Your advice and words are much appreciated.   Right now my mom is very independent and she feels that if she can still have this independency for a few years she would gladly take that.  However, she also feels that if she starts treatment, she will lose that immediately which she isn't quite willing to give up as of yet.

    I will let you know what the oncologist has to say.  Her appointment is in the afternoon.

    My best to you.

    Kathy