Don't know what to think!!

rjjj
rjjj Member Posts: 1,822 Member
edited March 2014 in Breast Cancer #1
Hello friends, I just got back from my Onc. They are making apts. in Billings for Radiation, and will call me and let me know when and where. My Onc. examined me ,and told me all was well. I had a list of questions, mostly about estrogen inhibitors, tamoxifin etc. since they told me i would be on them for 5 years. She said all i would be on is Herceptin for the next 6-7 mo.'s! because i was hormone neg. except for HerPos. (forgot the term h2nu???) anyway..i had a melt-down! I cried and told them they must be wrong. She said it must be a typo..so she went and read my pathology report. (my path report at home does not say pos. or neg. but she came back and told me yes, i was neg. for hormones, and that at least i wouldn't have to have those side-effects, and why give them to me if they would not have any effect.I was told one thing and now another..my husband said Jackie she just read it on the report. I still couldn't believe it. I guess it's just when you have a plan in your mind and it changes..it gets scarier.

I will have an echo gram on Fri. to see if my heart is strong enough for Hercepton, then a bone density test sometime soon. I am going to try to go on the no white flour/sugar diet she recommended. and start getting regular excersise when i am up to it again. This last treatment really did me in as far as being tired, and extra emotional. I hope it gets better soon. I am still depressed over the no hormone thing. anyway thanks for listening. Love jackie

Comments

  • ritazimm
    ritazimm Member Posts: 171
    Hey Jackie, I too would be
    Hey Jackie, I too would be very thrown off by having the information change once you've had time to decifer the original report and form a plan in your mind. Apparently it must be fairly common that the biopsy report is different from the pathology report. My biopsy report said invasive ductal but the pathology said invasive lobular, this didn't really change anything in my plans or I would have been very upset as well.

    I'm sorry that this happened to you. It is hard enough to deal with everything and then they go and change everything once you feel like you've gotten a bit of a grasp on things. I'll be praying that you will become more at ease with this change and that you recover from the chemo swiftly.

    God bless,
    Rita
  • mmontero38
    mmontero38 Member Posts: 1,510
    {{{{{{{{{{HUGS
    {{{{{{{{{{HUGS JACKIE}}}}}}}}}} It will be allright. Just think you won't have to go through all those side effects. Love you, Lili
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Oh, Jackie...
    I am so sorry you had such a difficult & emotionally draining day, dear. You know, ALL of this stuff CAN be so confusing: HER (what)? positive/negative (which?)... So many words, so many numbers... You know, not too long ago - another BC survivor (not here within the group) suggested that we should all be awarded some sort of a diploma - for ALL that we must learn, and for how QUICKLY we are forced to learn it! Most of us are not medical professionals nor scientists. And, BC is a very serious disease with complicated & multi-faceted treatment. In addition to the chemo itself, it's no wonder we wind up with "chemo brain" - the brain simply gets overloaded! Therefore, we are all allowed our occasional melt-downs. You most certainly are allowed yours today.

    I sincerely hope you don't feel bad about questioning your onc. I'm sure you're not the first, and that she understands.

    Don't know much, at all, about Herceptin. But, there are many here who can speak about it from their own experience. And, yes, of course - a change in plans can certainly throw us off track. I've been thrown off of my track many, many times. It's never gotten easier to take. Somehow, try to find comfort in knowing that your onc is on top of your situation. She's right, and I agree. No good doctor should provide unnecessary or ineffective medication for any patient, no matter the disease.

    Please don't worry too much about those upcoming tests. Take a deep breath, Jackie. Remember: one step at a time... That's all you can take, just one step...

    The cumulative effects of chemo intensify; and, that final treatment can really knock the patient onto her/his butt. I know, because my last one was the very worst of all. Please go easy on yourself. Get lots of rest. Time is what's most needed now, in order to heal.

    And I think the whole radiation situation is adding to your stress/anxiety level - while you're physically wiped out from chemo at this moment, I'll add - because you have to go all the way to Billings. Away from home, your hubby, and beloved Tootsie. But, again... One step at a time. You know you have to do it. As it gets closer, I know you'll get more accustomed to the plan. Eventually, you'll accept it & move forward with grace & dignity. As you have throughout your journey.

    You have my heart tonight, Jackie. Hopes & prayers your way, especially for a better day for you tomorrow...

    Kind regards, Susan
  • tgf
    tgf Member Posts: 950 Member

    Oh, Jackie...
    I am so sorry you had such a difficult & emotionally draining day, dear. You know, ALL of this stuff CAN be so confusing: HER (what)? positive/negative (which?)... So many words, so many numbers... You know, not too long ago - another BC survivor (not here within the group) suggested that we should all be awarded some sort of a diploma - for ALL that we must learn, and for how QUICKLY we are forced to learn it! Most of us are not medical professionals nor scientists. And, BC is a very serious disease with complicated & multi-faceted treatment. In addition to the chemo itself, it's no wonder we wind up with "chemo brain" - the brain simply gets overloaded! Therefore, we are all allowed our occasional melt-downs. You most certainly are allowed yours today.

    I sincerely hope you don't feel bad about questioning your onc. I'm sure you're not the first, and that she understands.

    Don't know much, at all, about Herceptin. But, there are many here who can speak about it from their own experience. And, yes, of course - a change in plans can certainly throw us off track. I've been thrown off of my track many, many times. It's never gotten easier to take. Somehow, try to find comfort in knowing that your onc is on top of your situation. She's right, and I agree. No good doctor should provide unnecessary or ineffective medication for any patient, no matter the disease.

    Please don't worry too much about those upcoming tests. Take a deep breath, Jackie. Remember: one step at a time... That's all you can take, just one step...

    The cumulative effects of chemo intensify; and, that final treatment can really knock the patient onto her/his butt. I know, because my last one was the very worst of all. Please go easy on yourself. Get lots of rest. Time is what's most needed now, in order to heal.

    And I think the whole radiation situation is adding to your stress/anxiety level - while you're physically wiped out from chemo at this moment, I'll add - because you have to go all the way to Billings. Away from home, your hubby, and beloved Tootsie. But, again... One step at a time. You know you have to do it. As it gets closer, I know you'll get more accustomed to the plan. Eventually, you'll accept it & move forward with grace & dignity. As you have throughout your journey.

    You have my heart tonight, Jackie. Hopes & prayers your way, especially for a better day for you tomorrow...

    Kind regards, Susan

    Herceptin
    Jackie ... I know you must still be in shock and confused ...

    On 1/21/09 I had a lumpectomy and at that time I was told all I would need would be radiation. However ... when I went to the oncologist he told me that the reports had come back indicating HER2+. I had no idea in the world what he was talking about because I knew he was talking chemo ... and my brain just shut down. Thank goodness I had a friend with me who did listen and paid attention to what he was saying. I would suggest you check the web for HER2 ... and herceptin and I think you will probably feel more comfortable with what the oncologist is telling you. From what I understand if you are HER2+ that is almost a "good" thing because it means that herceptin will "work." If you are HER2- ... herceptin will do nothing for you. Also ... from what I understand ... herceptin isn't really "chemo" in the "real" sense of the word... even though it is given by infusion.

    Anyway ... my oncologist told me I would need taxol ... along with herceptin ... every week for 12 weeks. This week will be week #8 ... and I have had NO nausea. It is not at all like the rough stuff you had before. The only side-effects I've had are from the taxol ... not the herceptin. It is my understanding that just about the ONLY thing they have to watch out for with herceptin is the heart... which is why the doctor ordered an echo for you. If that comes out OK ... you should be good to go. I don't know how many infusions your doctor told you you'd need ... but after my 12 weeks of taxol/herceptin ... I will continue to get herceptin every 3 weeks for a year. I hesitate to say this ... and I am almost embarrassed ... but last week when I saw my oncologist and he asked how I was feeling ... my answer was "this is a breeze." After reading the posts here ... I have so much admiration for those who have had it much rougher ... many surgeries, ACT, TAC ... or whatever those tough chemo mixes are. So I would say it sounds like you've already been through the worst part of it ... and herceptin should be a "breeze" for you too. But ... I don't want to influence you too much ... so be sure and read everything you can about it on the web ... because all I can do is speak from my own experience.

    hugs.
    teena
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    Jackie
    I know you must be totally confused. Doesn't your pathology report have all of that on there? It should...mine does. Perhaps you should request the FULL pathology report from your doctor. Maybe you didn't get all of it. And, that might make you feel better. I have just read a lil bit about Herceptin and I think you just have to watch your heart. But, they are going to test you and make sure your heart is strong enough. Will you still have radiation? I am still taking radiation, so, if you have questions on that..I will help you all that I can.
  • celinelvr
    celinelvr Member Posts: 30
    rjjj
    rjjj, sorry to hear you are upset. When we get an idea of what things are and where we stand and all that changes all a sudden it can be unerving. I have a friend that has just finished her hercepton therapy. It was not as bad as the chemo she had to take and she still grew her hair back at the same time.

    I would like to know more about this diet you are starting. What so bad about the white flour/sugar stuff? I gave up diet sugar for fear it gave me cancer.... I don't eat white bread anyway, but I do eat other stuff that may have white flour in it.

    Hoping you are feling better about the change in plans after you have a chance to read up on things.

    Milly
  • tommaseena
    tommaseena Member Posts: 1,769
    celinelvr said:

    rjjj
    rjjj, sorry to hear you are upset. When we get an idea of what things are and where we stand and all that changes all a sudden it can be unerving. I have a friend that has just finished her hercepton therapy. It was not as bad as the chemo she had to take and she still grew her hair back at the same time.

    I would like to know more about this diet you are starting. What so bad about the white flour/sugar stuff? I gave up diet sugar for fear it gave me cancer.... I don't eat white bread anyway, but I do eat other stuff that may have white flour in it.

    Hoping you are feling better about the change in plans after you have a chance to read up on things.

    Milly

    Herceptin
    Jackie,
    I too am negative for the hormone thing but HER2+(HER2neu). I finished my 4 treatments of A/C on 4/21 and will start Taxol w/Herceptin once a week for 12 wks on 5/7 and then Herceptin alone every 3 wks for one year. I have been one of the fortunate ones who hasn't had any nausea while on the chemo.

    The only side effect from Herceptin is the heart thing. I had and Echo prior to me starting my chemo treatments and this Friday I will be having another one--I will be thinking of you when I am having mine done---then my doctor will have an echo ordered every three months while on treatment. You should be closely watched while on this medication and that is the reason for the echo.

    You should get the full path report if not from your doctor then from the hospital. I know that when they did my biopsy they should have done the special staining since they had enough tissue and then I would have known that I was HER2+ before I had surgery(double mastectomy with reconstruction). And knowing this prior to surgery you would know what you were up against in this fight and not taken by surprise and get different treatment after the surgery was all over. This happened to me as well. I was told when I went in for my surgery that since there would be a small amount of breast tissue--close to the skin that more than likely I would just have to be on Tamoxifen(spelling) but then after the final path report I felt like I was thrown in to a pack of wolves because then everything changed. I saw my oncologist for the first time one week after the final path and she explained everything to me step for step and that gave me confidence that I can beat this and I will.

    Many hugs,
    Margo
  • rjjj
    rjjj Member Posts: 1,822 Member

    Herceptin
    Jackie,
    I too am negative for the hormone thing but HER2+(HER2neu). I finished my 4 treatments of A/C on 4/21 and will start Taxol w/Herceptin once a week for 12 wks on 5/7 and then Herceptin alone every 3 wks for one year. I have been one of the fortunate ones who hasn't had any nausea while on the chemo.

    The only side effect from Herceptin is the heart thing. I had and Echo prior to me starting my chemo treatments and this Friday I will be having another one--I will be thinking of you when I am having mine done---then my doctor will have an echo ordered every three months while on treatment. You should be closely watched while on this medication and that is the reason for the echo.

    You should get the full path report if not from your doctor then from the hospital. I know that when they did my biopsy they should have done the special staining since they had enough tissue and then I would have known that I was HER2+ before I had surgery(double mastectomy with reconstruction). And knowing this prior to surgery you would know what you were up against in this fight and not taken by surprise and get different treatment after the surgery was all over. This happened to me as well. I was told when I went in for my surgery that since there would be a small amount of breast tissue--close to the skin that more than likely I would just have to be on Tamoxifen(spelling) but then after the final path report I felt like I was thrown in to a pack of wolves because then everything changed. I saw my oncologist for the first time one week after the final path and she explained everything to me step for step and that gave me confidence that I can beat this and I will.

    Many hugs,
    Margo

    Thank you sisters
    I am so grateful that i have all of you! I will try to get a full path report like you suggested, and go on to the next step. One at a time...i guess i was looking down the road to far. I am a little overwhelmed at leaving home for rads. I will keepyou all posted on my echo-gram and the no white/flour/sugar diet. I am going to research this and see if they have a book or something on it. All she told me is it eleminates a lot more foods than you would think. This i'm pretty sure of (guess i'll live on lean quisine haha. Thank you so much for your encouragement..and like Margo says we will beat this too!!
    Love Jackie
  • mimivac
    mimivac Member Posts: 2,143
    rjjj said:

    Thank you sisters
    I am so grateful that i have all of you! I will try to get a full path report like you suggested, and go on to the next step. One at a time...i guess i was looking down the road to far. I am a little overwhelmed at leaving home for rads. I will keepyou all posted on my echo-gram and the no white/flour/sugar diet. I am going to research this and see if they have a book or something on it. All she told me is it eleminates a lot more foods than you would think. This i'm pretty sure of (guess i'll live on lean quisine haha. Thank you so much for your encouragement..and like Margo says we will beat this too!!
    Love Jackie

    Don't worry, Jackie
    I know this must come as a shock to you. Of course. You had one thing in mind and now are being presented with something else. My biopsy results were ER positive, but after surgery it turned out that I was triple negative. I cried as well, and felt that I had been dealt a setback. But my oncologist didn't see it that way. Jackie, Herceptin is a very powerful drug. It was been a miracle drug of sorts for HER2 positive breast cancers. It is very fortunate that you get to take this. Your hair will grow back on Herceptin and most people have very few problems with it. It is not like the chemo we've been on these past few months.

    I second you doctor's suggestion of diet (not that you need me to recommend anything!). My onc. told me to eat low fat and mostly vegetarian. White sugar and flour cause inflammation that can lead to cell proliferation. Tumors are fed by sugar. I try to avoid both, but I am not always successful. There is a book called "What to Eat if you Have Cancer" that was helpful to me. I'm sure you already know, but avoid overly processed foods, white bread, white rice, white pasta. I find that I really enjoy whole wheat, multi-grain, spelt, quinoa, barley, etc. They taste a lot better to me now than the white stuff. As for the sugar, I mostly eat fruit for my dessert fix. Last night I made a milk shake out of rice milk, bananas, and frozen wild blueberries. I use a bit of either agave necter or stevia if I want to sweeten something. Anyway, you can handle this, Jackie. It will be OK. PM me if you want more specific diet/exercise resources.

    All my love,

    Mimi
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    rjjj said:

    Thank you sisters
    I am so grateful that i have all of you! I will try to get a full path report like you suggested, and go on to the next step. One at a time...i guess i was looking down the road to far. I am a little overwhelmed at leaving home for rads. I will keepyou all posted on my echo-gram and the no white/flour/sugar diet. I am going to research this and see if they have a book or something on it. All she told me is it eleminates a lot more foods than you would think. This i'm pretty sure of (guess i'll live on lean quisine haha. Thank you so much for your encouragement..and like Margo says we will beat this too!!
    Love Jackie

    Good morning, Jackie!
    Hello, dear! Am glad to see you "here"... I was thinking of you earlier, hoping today is at least a little better for you than yesterday.

    :-)

    This may be of no consolation to you at the moment, but... I'd like to share with you the following, in the spirit of trying to cheer you:

    From what I've learned from this group about Herceptin, I wish it was "right" for me.

    Although you'll need to be away from home (and I know you're a "homebody") for rads - you most certainly will then begin to recover from chemo. I found, like for many others - probably, that once I began to feel physically better following chemo... My mood & outlook lifted, too. I sincerely hope & pray that this will also be so for you, Jackie. Being "beat up" constantly is difficult not only for the body; but, also mentally, emotionally & spiritually. I'll be hoping & praying that you'll "breeze" through your rads.

    Kind regards, Susan
  • peggy65
    peggy65 Member Posts: 100
    i don't blame you at
    i don't blame you at all.talk about feeling out of control. the whole thing is so scary because we don't enough about it and have to depend on if someone did the test right or someone read the result correctly. whew! all will work out. sometimes we just want to know when it will work out. love, peggyl
  • Mikes Sunshine
    Mikes Sunshine Member Posts: 129

    Good morning, Jackie!
    Hello, dear! Am glad to see you "here"... I was thinking of you earlier, hoping today is at least a little better for you than yesterday.

    :-)

    This may be of no consolation to you at the moment, but... I'd like to share with you the following, in the spirit of trying to cheer you:

    From what I've learned from this group about Herceptin, I wish it was "right" for me.

    Although you'll need to be away from home (and I know you're a "homebody") for rads - you most certainly will then begin to recover from chemo. I found, like for many others - probably, that once I began to feel physically better following chemo... My mood & outlook lifted, too. I sincerely hope & pray that this will also be so for you, Jackie. Being "beat up" constantly is difficult not only for the body; but, also mentally, emotionally & spiritually. I'll be hoping & praying that you'll "breeze" through your rads.

    Kind regards, Susan

    Hang in there
    Jackie, I am sorry you are going thru this on top of everything else. All I can say is hang in there . The side effects from the chemo will lesson as time goes by I am almost 3 weeks post my last treatment of AC and hope to never have it again in my life. My stomach is feeling much better now and I am starting to not feel as tired. My eyes continue to run all the time but I am sure that will stop soon too. This has been a long road for you and changing the plans now can't be easy for you. I continue to keep you in my thoughts. You are an amazing lady always so uplifting to my spirit. Love, Nancy
  • kartiae
    kartiae Member Posts: 16
    Jackie,
    Just keep a positive

    Jackie,
    Just keep a positive outlook on it all. I am allergic to the herceptin so my chances of getting cancer again is like 80% and I have been on tamoxifen for 3 years and I have to see a doctor tomorrow to find out if I have Uterine cancer now from the Tamoxifen. I just keep a positive attitude because it the people who let it get them down that are the ones who don't make it. Take care, you are in my thoughts and prayers.
  • tgf
    tgf Member Posts: 950 Member
    kartiae said:

    Jackie,
    Just keep a positive

    Jackie,
    Just keep a positive outlook on it all. I am allergic to the herceptin so my chances of getting cancer again is like 80% and I have been on tamoxifen for 3 years and I have to see a doctor tomorrow to find out if I have Uterine cancer now from the Tamoxifen. I just keep a positive attitude because it the people who let it get them down that are the ones who don't make it. Take care, you are in my thoughts and prayers.

    Kartiae
    Please let us know how your doctor appointment goes Thursday. I'll be thinking only good thoughts for you ...

    hugs.
    teena
  • lynn1950
    lynn1950 Member Posts: 2,570
    Away for radiation
    Jackie,
    This whole lack of control just sends us spinning. It is not easy to "just let things be in the moment," especially when "things" keep changing. You have been so strong through all of this. Letting those emotions out is important and good.

    I had to leave home for radiation, too. I stayed near the hospital in the Bishop Foote House in Boise. It was donated for the use of cancer patients (mostly). I was also eligible for a "scholarship" that paid the rent for my room. The people there were lovely, and that helped a lot. I hope that there is a good situation for you in Billings.

    Love, Lynn