new one in town

Options
wetcoast
wetcoast Member Posts: 193
new one in town

Comments

  • wetcoast
    wetcoast Member Posts: 193
    edited January 2008

    Well this is a place I never thought I would be! On Dec 11/07 I was diagnosed IDC stage 1 (1.7 cm tumor) historical grade 3. I went back Jan 8/08 for a partial mastectomy and sentinel lymph node biopsy. 4 nodes removed and all have come back negative. Yippee//

    I am ER, PR, Her-2/neu negative. I have yet to see the oncologist as he is on vacation so do not really know the next step at this point and time. Nothing to happen until at least the 28th of jan. Seems like years down the road. From everything I have been reading it looks like chemo and then radiation. I guess I am looking for someone that might have a comparable situation and wonder what protocol they had. I know that everyone is dealt with differently but as you all know the waiting drives a person nuts. I am 48 years old that is a runner and loves to run. I ran 2 marathons last year and qualified for Boston in April 2008 and had signed up. I may be a cheer leader but I still want to go. I guess if I have to be the new one in town I couldn't  have found a better place to be with lots of information, experience, positive energy and smiles. Happy trails girls

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    You're right, this is a great Board to come to even under the worst of circumstances.



    Very sorry to read of your recent diagnosis. I'm ER+ myself, but wished to take a moment



    to welcome you. Soon others will come along too more than likely to say "hello".



    All the best to you,

    Tender

  • CaNatalie
    CaNatalie Member Posts: 70
    edited January 2008

    Hi Wetcoast,

    Just wanted to say welcome. I would not have made it this far without the support from here as well as the great information. To answer your question about protocol, my situation is somewhat different in that I am getting chemo then surgery. I will say that when first  diagnosed my tumor was 2cm, I was node negative and the chemo regimen I am getting is Carboplatin and Taxotere. It has definitely kicked my butt (and hopefully the cancer), but it has not been as horrible as I thought. Hope your visit with the oncologist goes well. I would consider getting a second opinion for treatment options as I saw two oncologist and they both had very different approaches.

    Take care,

    Natalie

  • ravdeb
    ravdeb Member Posts: 3,116
    edited January 2008

    Hey...

    I had a 2 cm tumor, node negative and I'm triple negative as well. I was diagnosed Sept 2005. I had a lumpectomy (clean margins), snb (clean), dose dense AC followed by 12 weekly Taxol. Then I had 33 rads treatments.

    They are now doing carboplatin for triple negs as well as a Taxane (Taxol or Taxotere). Try to get a second opinion but overall..you do need chemo as that, along with rads, is all we've got.

    Good luck and be well.

  • NancyM
    NancyM Member Posts: 289
    edited January 2008

    Hi Laurel - I had a 2.8cm IDC and 2 positive nodes and a lumpectomy in 2005.  I had adriamycin + cytoxan (4 doses) and Taxol (4 doses) plus radiation. 

    While your first and utmost priority is getting rid of any remaining cancer cells, you should know that some people have had nerve damage in their feet and hands from Taxol - since you mentioned marathon running, I know this could be something that you want to consider.  I am NOT suggesting turning down a drug that your oncologist recommends for your treatment - only that you and your onc talk about side effects. 

    Best of luck to you and hope you get to Boston (even as a cheerleader!)  My ma's family is from Boston (it could get wicked cold so take a sweatah and get some chowdah!!)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    What does triple negative mean??? What are the implications of that??

  • smithlme
    smithlme Member Posts: 1,322
    edited January 2008

    Hi Laurel,

    I'm so sorry you had to join us. I was diagnosed on 3/28/07 with a 2cm tumor and no node involvement! All nine that were removed were clear. I chose to have a Mastectomy. Because my C was high grade, my onc went aggressive. I was given 4 rounds of AC, two weeks apart, followed by 4 rounds of Taxol, also 2 weeks apart. To build my counts fast, I had to learn to give myself Neupogen shots for 7 days following each treatment. It wasn't fun, but I knew I had to do it. The Taxol caused neorapathy in my feet, but as a friend told me, at least I have feet! It's all about attitude and the will to live. I also developed Lymphedema in my left hand and upper arm, so I also wear a compression sleeve and glove. My TRAM flap reconstruction is January 28th and I am more than ready! It seems like forever since my diagnosis and not just 10 months...

    Linda

  • NancyM
    NancyM Member Posts: 289
    edited January 2008

    Crazydaisy, triple negative is short hand for saying you are er/pr/her2 negative.  Negative for the 3 main receptors, that is.  From what I've been told, the good thing about this is that chemo seems to be a great defense against these cancer cells.  However, we can't take things like Tamoxifen or Herceptin afterward as they won't do any good.  I see that you are er/pr-, but if you are her2 - as well, then you are triple negative.  If you are her2 + then your onc will talk to you about having Herceptin as part of your treatment.  Good luck to you! 

  • NancyM
    NancyM Member Posts: 289
    edited January 2008

    Linda, I have LE in my arm and neuropathy in my feet...it's been over 2 years since I finished treatment and the neuropathy is gettng much better.  I hope you find improvement over time, too!

  • ravdeb
    ravdeb Member Posts: 3,116
    edited January 2008

    The other thing about triple neg is that we have a high risk of getting a recurrence during the first three years BUT the risk significantly lowers after that. I've even read that after 8 years, with no recurrence, some doctors cautiously say you are cured! So, although triple neg tends to be aggressive, this is not so after about 3 years...

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    I'm at a similar stage you are - lump + snb and am waiting to see my oncologist (also on vacation) this thursday. I sometimes think the waiting is worse than the treatment because you can imagine too many horrible things. In my case the tumor was .9cm and 2/2 lymph nodes were clean.



    Probably the worst thing about being triple neg is that we are only 15% of the people getting breast cancer, so till now, we haven't gotten much benefit from all the research that is being done. That's changing - hopefully soon enough for all of us!



    Susan

  • wetcoast
    wetcoast Member Posts: 193
    edited January 2008

    thanks to everyone for the posts. Patience is definitely not my virtue. I just want to know what they are going to do and begin. What ever happens will happen, I am a STUBBORN person and I can do this. Underneath my arm and bicep it still feels numb anyone else with the same//I would love to go for a run but dr said I shouldn't for 4wks. I'll wait until 3 and maybe sneak a short one.

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    it took awhile for the numbness to wear off - I was sorry when it did. Until then I didn't feel the stitches! Enjoy it while it lasts.



    I'm not patient either - I'm from NYC and believe that the only way to drive is with one hand on the horn so everyone gets out of my way. Having said that - don't run before they tell you to. There are internal & external stitches - why risk it? I went for a bike ride 5 days after my surgery & regretted it the next day.



    I think we feel better than we are - especially when we are still numb.



    Susan

  • nosurrender
    nosurrender Member Posts: 2,019
    edited January 2008

    Guitargirl and Wetcoast, I am sorry you both have to be here.

    I am past the six year mark of my tripleneg diagnosis.

    It can be beaten.

    They have made great strides in research now and they know a lot more than they used to!

    hang in there- this is the worst part of it. Things will get better as you get stronger and have a treatment plan in place.

    Guitar girl I thought I was the only one who drove like that!

    Hugs,

Categories