Oh the waiting game!

lovelylola
lovelylola Member Posts: 279
edited March 2014 in Breast Cancer #1
Long message
Monday, I finally got in to see the 2nd opinion onco dr who would be following me here on the Big Island. This is almost 2 week since the first visit on Oahu. I'd finally made a decision about chemo and would be having Taxotere and Cytoxan followed by 5 years of Arimidex. I'd gotten a wig, scarves, hats and was mentally prepared. Thought this would just be to go over in more depth the actual chemo treatment plan. Well, Murphy's law of never counting on anything came to play.
This onco dr (who by the way I like alot more than the one on Oahu) took about an hour and a half to talk about the pros and cons of chemo, port vs vein, side effects etc. I told him the my decision was based on the info that I was given by the other doc who said without treatment, both chemo and arimidex, I was at a 40-50% chance of recurrence and with it the rate dropped to 5-10%. At that point he asked if anyone had gone over my pathology report with me because the graph of the figures didn't play out that way. Then he spent time reviewing the report with me that indicated 56% of alive and cancer free in 10 years with no treatment, 73% chance of alive and cancer free in 10 years with just arimidex and 81% chance of alive and cancer free in 10 years with both chemo and arimidex.
This made me rethink everything a bit. My cancer is Stage 2a invasive ductal carcinoma, no lymph node involvement, a tumor of 2.2 cm and I did have a bilateral mastectomy with no reconstruction. He asked me if I had heard about oncotype testing. I told him I had through you all here but the other doctor had indicated I "had to have" (in his opinion) the chemo and it would be a waste of time and money.
Long story short, my new onco dr could sense my apprehension (isn't everyone) with chemo and made the referral for the Oncotype testing. I talked with them today about my insurance, which won't cover it but they do have a Patient Assistance Program that I qualify for.
Now I feel like I'm really taking charge. I should have been more forceful in the beginning. I will hopefully here in a couple weeks. If I have a low Oncotype score, I don't think I will opt for chemo, even with the family history. Even if I do opt for it, I am making the decision based on all the info I can get, instead of relying solely on the doctor recommendation (of which I had conflicting info).
Has anyone else dealt with Oncotype testing and then opted not to have chemo? I have been so blessed with all the support and information here. Lola

Comments

  • Redzey640
    Redzey640 Member Posts: 3
    Oncotype
    Hello Lola, I also had a second opinion with an oncologist today who recommended the oncotype testing. My insurance doesnt cover the test and my oncologist is writing them a letter. I was also set to start chemo but I am glad I went for a second opinion. I believe it is 10-14 days until I hear the results. I hope you get good news!
  • lanie940
    lanie940 Member Posts: 490
    I have. My score was 21, the
    I have. My score was 21, the low end of the medium range. I opted against CHEMO it since it would have only improved my results by 2-3%. With RADS and the hormones, my recurrance rate is 13%. EVERY woman has a 12% chance of getting breast cancer in their lifetime.
  • Calleen
    Calleen Member Posts: 411
    lanie940 said:

    I have. My score was 21, the
    I have. My score was 21, the low end of the medium range. I opted against CHEMO it since it would have only improved my results by 2-3%. With RADS and the hormones, my recurrance rate is 13%. EVERY woman has a 12% chance of getting breast cancer in their lifetime.

    Me too
    I had the oncotype done a few weeks ago and I scored a 10. I was stage 2A with no lymph node involvement. my tumor was 2.3... So right now witout anything else my chance of recurrance is 10% ... So based on that my Doctor said Chemo would not be a benefit for me.. and if I decide to take tamoxifen my score drops 3%. I am going to opt out of taking anything at this point. Too many side effects of the tamoxifen for just 3%...I too had a bi-lateral mastctomy but I had immediate reconstruction. so I didn't do rads. Now I'm waiting on the second surgery to put some headlights on these new boobies... I think I look like a giant scary smiley face right now. with my tummy scar as the smile, my belly button that was moved up as the nose and the new nippleless boobs as the weird looking eyeballs...LOL..
  • lovelylola
    lovelylola Member Posts: 279
    Redzey640 said:

    Oncotype
    Hello Lola, I also had a second opinion with an oncologist today who recommended the oncotype testing. My insurance doesnt cover the test and my oncologist is writing them a letter. I was also set to start chemo but I am glad I went for a second opinion. I believe it is 10-14 days until I hear the results. I hope you get good news!

    insurance coverage
    when the company that does the oncotype testing contacted me today for formal approval to do the testing they did mention the Patient Assistance Program (PAP). Based on where you live, they have a threshold to be below for your adjusted gross income. I am below the threshold so they indicated that there would be no out-of-pocket expense for me. They will try to get my insurance to cover it since it doesn't require a prior-authorization and said they are willing to appeal if the insurance so no again but I'm still covered to have them do the procedure. You might still want to call them and find out about the program and whether or not you may qualify for the PAP. The number I called today was 1-866-662-6897. They are open M-F 8:30 AM to 7:00 PM EST. If you still want to have the test, the worst they can say is no you don't qualify for the PAP but it could be worth a shot if you want a clearer picture of options. Good luck and I hope your news is good too! Lola
  • lovelylola
    lovelylola Member Posts: 279
    Calleen said:

    Me too
    I had the oncotype done a few weeks ago and I scored a 10. I was stage 2A with no lymph node involvement. my tumor was 2.3... So right now witout anything else my chance of recurrance is 10% ... So based on that my Doctor said Chemo would not be a benefit for me.. and if I decide to take tamoxifen my score drops 3%. I am going to opt out of taking anything at this point. Too many side effects of the tamoxifen for just 3%...I too had a bi-lateral mastctomy but I had immediate reconstruction. so I didn't do rads. Now I'm waiting on the second surgery to put some headlights on these new boobies... I think I look like a giant scary smiley face right now. with my tummy scar as the smile, my belly button that was moved up as the nose and the new nippleless boobs as the weird looking eyeballs...LOL..

    I am going to pray for a
    Calleen -I am going to pray for a score like yours. Depending on the score, I will evaluate the arimidex. It has it's own set of issues as well. However, my tumor was very high estrogen positive so it may still be necessary. Only time will tell but that da**n clock is so-o-o slow! By the way, I got a good giggle for the day with the visual image of your "smiley face". I have a vivid imagination and your description set it off. No offense meant! Lola
  • susie09
    susie09 Member Posts: 2,930
    Calleen said:

    Me too
    I had the oncotype done a few weeks ago and I scored a 10. I was stage 2A with no lymph node involvement. my tumor was 2.3... So right now witout anything else my chance of recurrance is 10% ... So based on that my Doctor said Chemo would not be a benefit for me.. and if I decide to take tamoxifen my score drops 3%. I am going to opt out of taking anything at this point. Too many side effects of the tamoxifen for just 3%...I too had a bi-lateral mastctomy but I had immediate reconstruction. so I didn't do rads. Now I'm waiting on the second surgery to put some headlights on these new boobies... I think I look like a giant scary smiley face right now. with my tummy scar as the smile, my belly button that was moved up as the nose and the new nippleless boobs as the weird looking eyeballs...LOL..

    ?
    I thought they only did the Oncotype test on certain cancers. I thought you had to be Stage 1 or maybe 2 with clean nodes. Cause I thought Stage 3 was aggressive cancer and required chemo? Guess I am wrong?

    ♠♣ Susie ♠♣
  • lovelylola
    lovelylola Member Posts: 279
    susie09 said:

    ?
    I thought they only did the Oncotype test on certain cancers. I thought you had to be Stage 1 or maybe 2 with clean nodes. Cause I thought Stage 3 was aggressive cancer and required chemo? Guess I am wrong?

    ♠♣ Susie ♠♣

    Susie - The way I understand
    Susie - The way I understand it is like you do. I believe it was developed to save low risk cancers from an aggressive treatment that may not have any significant added benefit. My cancer is Stage 2A with clean nodes and relatively small 2.2 cm tumor that was Estrogen positive. Maybe one of the other sisters can shed some light on this. I'm just learning about it as I go through the testing process.
  • Akiss4me
    Akiss4me Member Posts: 2,188

    Susie - The way I understand
    Susie - The way I understand it is like you do. I believe it was developed to save low risk cancers from an aggressive treatment that may not have any significant added benefit. My cancer is Stage 2A with clean nodes and relatively small 2.2 cm tumor that was Estrogen positive. Maybe one of the other sisters can shed some light on this. I'm just learning about it as I go through the testing process.

    You are correct Lola and Susie
    It is for Estrogen positive tumors that are stage 1 or 2 with NO node involvement. My score came back less than a "1". First ever. They retested three times. I fit the criteria but also had a tumor that was grade 3 which is more aggressive. Needless to say, chemo would not have benefited me. Since my tumor was so close to the cut off size of 2 cm (it was 1.9 cm) but a grade three....without the test, they would have leaned towards chemo just to play it safe. The test proved absolutely no benifit to me at all. So it is a very beneficial tool. Pammy
  • ColoradoGal
    ColoradoGal Member Posts: 14
    I opted for no chemo after I got my Oncotype of 21
    Stage 2a, IDC, no lymph nodes, no vascular invasion, no family history and otherwise healthy, so I am taking my 90% rate of survival and bridging the gap to 100 on my own via more rest, taking better care of myself. NO chemo for me. I had THREE second opinions (haha) and none of them could give me a compelling reason to have chemo - given my paths and oncotype. I am praying for a low low score for you.
  • lovelylola
    lovelylola Member Posts: 279

    I opted for no chemo after I got my Oncotype of 21
    Stage 2a, IDC, no lymph nodes, no vascular invasion, no family history and otherwise healthy, so I am taking my 90% rate of survival and bridging the gap to 100 on my own via more rest, taking better care of myself. NO chemo for me. I had THREE second opinions (haha) and none of them could give me a compelling reason to have chemo - given my paths and oncotype. I am praying for a low low score for you.

    With or without chemo and
    With or without chemo and arimidex, that is the question. Only time will tell. So much good info from you all! That was an awesome score! Thank you. Each of us has to fight this beast the best way WE know how and sometimes NO to some treatment is the best. One of the best things to come out of the onco visit this week besides the Oncotype testing referral was that my onco dr was supportive of doing non-medical things as well to fight this. He has referred me to the naturopathic onco dr in town. I'm making the appt tomorrow. Of course, my insurance doesn't cover this type as well but it's worth it to me. Take care and keeping on fightin' Lola