Onc decided I need one more Taxol:/

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Billynda
Billynda Member Posts: 121
edited June 2014 in Stage III Breast Cancer

Today was supposed to be my last!  :(  Then we were talking about scheduling my PET scan (April 1 - my anxiety is getting the best of me again now that it's coming close).  I keep thinking I can't see how the spot on my liver that the first PET picked up could be cancer.  Then, every time I see him, it seems he is certain that it IS cancer.  It freaks me out.  So, he told me today that nest time I'll come back in 3 wks (instead of 2, like I've been doing) to do my Herceptin but that he wants me to get one more dose of Taxol.  He told me before that if the spot is cancer then we'd continue with Taxol a little longer, but never mentioned tacking on this 5th round of Taxol.  FRUSTRATING!

One good thing is that I talked to him about ooph vs. hyst.  He told me that me being er/pr- (which I actually will be getting a second opinion on anyway) - that he doesn't think either is really medically necessary, but he also doesn't think that it is unreasonable, either since my GM did have ovarian cancer.  He said it's a personal decision and he's fine with tubal ligation, ooph or hyst, whatever I choose.  My OB just wants me to do the ooph, but I'm still leaning towards the total hysterectomy.

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  • Pure
    Pure Member Posts: 1,796
    edited March 2010

    Why does he want a fifth? WHy is he so certain it is cancer? How is your blood word-does it show that your liver is elevated? Mine is at 44. I think people with mets there liver blood work will show in the hundreds.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2010

    Oh, I am so sorry. It is hard when you have the "finish line" in your mind and it gets changed. I wonder myself why he is giving you an extra one? Does it have something to do with the Herceptin??

    And he has no way of knowing that your spot is cancer. No way. I have heard of so many other people who have had scares that have turned out to be nothing. 

    This must all be so distressing. I am so sorry you are having to go through it. 

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  • apple
    apple Member Posts: 7,799
    edited March 2010

    hey billynda.. i had to have  18 more taxols. (every single week for 6 months, minus a week.  i am so happy to have hair finally and actually need a cut..... man up.Smile 

    good morning - i love you, sorry to be tough.

    if you use the search function you can fine threads outlining the wisdom of a total hysterectomy.  (the search function here is better than google). Some of us really have to aggressive attach cancer and you certainly sound up to it.  I agree with Kerry.. there is no way to know the spot on the liver is cancer..  there are lesions and such that could turn up. that are not cancer.  My own sister has a TENNIS ball sized tumor that they are confident is not cancer because of the growth pattern.,...

    I would however assume that it could be and kill it..

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  • Pure
    Pure Member Posts: 1,796
    edited March 2010

    yeah I would question him more. With just one stop it could be so many things. Have you yourself gotton the path and read it? It just seems weird if he thought it was cancer why isn't he having it biopsised to make sure its not er positive. If it is you could use anti hormonals. 

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  • Billynda
    Billynda Member Posts: 121
    edited March 2010

    The reason I didn't question too much is because I will have my next PET and my 2nd opinion appt. before I go in for the next Taxol/Herceptin anyways.  I have read the PET report and it says one 1.9 cm spot on my liver - that's it, no little spots, no other spots on any other organs.  If the next PET still shows a spot, whether the same size or bigger/smaller, I will get a biopsy because I found out too that if it's a liver hemangioma that estrogen from pregnancy can enlarge it and then it can shrink once the hormones level out.  As if it's not complicated enough.  The Path from my BLM shows 0% er and pr.  Tomorrow is my 2nd opinion appt. and I will ask her too what she thinks of all this.  I also got my tumor slides so I will have them test them, too.  So, I'm doing what I can.  When he first told me about the spot he said that it is not certain it is cancer, but it's just whenever I talk to him about it, he just always puts a big emphasis on IF it's not cancer - not IF it is cancer.  My blood work in February he said was slightly elevated.  I didn't ask how much because I was freaked out enough that it was elevated.  I can't remember who it was, but someone else said don't pay too much attention to the levels while you'reon Taxol, anyways.  Yesterday, he said my blood work looked great.  So, if he's doing it because of the slightly elevated levels in Feb., that means he had all this time to tell me he wanted to do one more tx. 

    Also, it's not the fact of having one more Taxol that I'm frustrated about, it's thinking that this is my last Taxol and THEN him tacking one more on.   

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  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2010

    This disease sucks.......after all of the miserable treatments we go through we have to deal with the emotional side as well - part of which is the "what if's".  I am so sorry you have to have another Taxol treatment added to what you thought was the end.  I know it's hard, but it does sound like your onc is being aggressive.  (((HUGS))) 

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  • Diana63
    Diana63 Member Posts: 773
    edited March 2010

    Billynda, I am so sorry, I know a little how you feel, I was at what I thought was the end of my Taxol, and he said nope we need 4 more. I said whats this we business, I'm the one taking it. Anyway I had a mini break down and bit the bullet and did them. I took 16 total but it was supposed to be 12, he said the stats say that 18 is better.

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  • Pure
    Pure Member Posts: 1,796
    edited March 2010

    Thats a good sign that your blood work was good. Taxol DOES raise your liver blood work so it sounds like that is doing good. I have a feeling it's NOT cancer.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited March 2010

    I feel your pain on having the finish line changed.  Next Monday is supposed to be my last AC.  My platelets were low so I'm trying to beef up my proteins and water because I really, really want it to be my last.

    It's good that the onc wants to be aggressive but I'm unclear why he didn't make this the plan from the get-go.  It'll be interesting to hear what the 2nd opinion says.

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  • Billynda
    Billynda Member Posts: 121
    edited March 2010

    Alright, so I had my 2nd opinion appt. today and I didn't find out anything super encouraging or discouraging.  I feel like I know more, but still don't know anything if that makes sense:)  She said that I can be "cautiously hopeful" that it's not cancer because it is just a single point and no other organs or spots are involved and my tumor markers were 40 on 2/17/10 (which was two weeks after Taxol #1) but that I have to realize that since we have no baseline (because they didn't do any scans during pregnancy before AC), that we have no idea if it was always just a single point mass or if the chemo has been doing it's job in clearing up other little spots... :(  She also said that she agrees with me on a total hysterectomy.  She also said that my docs at COH are doing exactly what they would be doing there (except I think she probably would have already had me do a liver biopsy, I'm going to schedule an appt. for that Monday) that I'm in good hands and that there's nothing different that I could've done to make things better - hearing that made me feel a tiny bit better. 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2010

    Well, I would take all that as good news!

    It also sounds as though she doesn't think the liver is cancer, but obviously can't rule it out 100%, so she will biopsy it. 

    And it is very reassuring to know you are getting all you should be. 

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  • Pure
    Pure Member Posts: 1,796
    edited March 2010

    That is good news!!!

     I hope that gives you some sense of peace.

    I am glad your getting it biopsied-then there will be no more wondering. Was your tumour markers a 40 or the blood work they run and one of them shows your liver blood work? 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited March 2010

    I think that it's very encouraging that she is going to take action and get the biopsy done.  Then you'll know and be able to get rid of those terrible doubts.  That she is able to be hopeful it's not cancer is a good thing!  She wouldn't raise your hopes if she was in doubt.  I'm pulling for a clear biopsy!!!!

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  • Billynda
    Billynda Member Posts: 121
    edited March 2010

    Thanks girls, I have been on my knees praying out loud about this. 

    Pure - the CA15 test or whatever the heck it is, that's the tumor markers right?  They were at 40.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2010

    Billynda....sounds like its good news....wishes that it keeps that way....thats for keeping us posted....sending hugs your way.....

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