CHEMO OR NOT?

Options
saraand45
saraand45 Member Posts: 47
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Will i nee chemo?  I have lumoectomy with 3 of 3 neg nodes. Tumor size 2.5 cm.  I don't see amny post on this type it is an ivasive ductal but maily made up of mucus.  I am told it has a good prognosis.  Mt breast surgeon doen't know if I will need chemo. I am going for a consult with medical oncologist next week to find out.  I am so anxious to know. If any one knows anythinf about this please let me know. As alway thanks for you help.

Hugs and Prayers,Tina

· Share on FacebookShare on Twitter
«13

Comments

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

    Hi Tina,

    So sorry that you find yourself here, but you will find much help on these boards.

    Have you had the Oncotype DX test? That might help with the decision. 

    Your tumor size might have some oncologists recommend chemo, but the negative nodes, HER2 negative, and low grade might mean that the risks of chemo might outweigh the benefits, and hormone therapy with Tamoxifen or an AI could be the better choice for you. 

    If you have any doubts about the oncologist's treatment plan for you, get a second opinion.  In the end, you are the one who will have to decide if chemo is the way to go for you, or if you are more comfortable with a different treatment plan.  You will be the one living with the short and long term effects of whichever combination of treatments you choose.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Hi Tina - We don't know if you will need chemo or not.  Do you know the grade of your tumor from the pathology ?  What age are you ? I agree with PatMom - if the oncotype DX  test hasn't been ordered yet you should ask your onocologist about it.   They would send in a sample of your tumor tissue and run some additional genomic tests on it -  the outcome of the oncotype DX test is a recurrance score which can help with the decision on whether chemo is beneifical or not. Scores are graphed into low risk of recurrance, intermediate risk and high risk of recurrance. There's a trial underway (TAILORX) which is looking at the intermediate risk scores - too be safe they've also included the high end of the low risk scores and the low end of the high risk recurrance scores in the trial. 

    In any case, I'm sorry you've had to join us - but glad you found this site - as there's a wealth of information and support here.   You're in the toughest part of the journey right now - you've been diagnosed with cancer but don't know what your treatment will be.  Things will get easier when you have a treatment plan in place and you're following through with the decisions that have been made.  

    I'd encourge you to create a list of questions for the oncologist .. write them down on a piece of paper and consider taking a tape recorder with you and asking the oncologist if you can record the appt.  You might also want to take someone with you and give them the job of taking notes and helping to make sure that your questions are answered and understood.

    Sending you lots of hugs and strength,

    Doreen  

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Tina,

    My diagnosis is almost a twin to yours...I was 46 yrs old the day I had my lumpectomy....I had the Oncotype testing done and had a score 12...there are many things that they use to guide in the decisions to do or not do chemo....

    I did lumpectomy, 37 radiation treatments, hysterectomy and am currently taking tamoxifen.....It will be 2 yrs since my nightmare started this coming November and I find that things are mostly back to normal and that I do need to be vigalant in breast care but that it doesnt control my life....you can do whatever you need to do and we will all be here to help when we can if you need us.

    Hugs

    Jule

    · Share on FacebookShare on Twitter
  • searching4
    searching4 Member Posts: 55
    edited October 2008

    Yes, Tina, ask about the Oncotype test--  it is specifically for women with node negative, hormone positive tumors.  It measure 21 genomes and will categorize your risk as low, medium, or high.  High generally equals chemo recommendation from the oncologist.  Low, probably not unless your tumor had other characteristics that indicated more risk.  Intermediate---  ah, there's the question mark.  You and your oncologist will decide.

    By the way, it takes several weeks, so ask now. 

    Deb

    · Share on FacebookShare on Twitter
  • saraand45
    saraand45 Member Posts: 47
    edited October 2008

    Thanks everyone for your feedback.  My appt is Tuesday with the Medical oncologist.  Monday I see radio oncologist.  Doesn't chemo if needed come before radiation?  I want to know how to work all this around my work schedule.  I know I want to know everything yesterday, but it seems this has been going on and on forever.

    Hugs and Prayers,

    Tina

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Tina - yes, you would do chemo first (if needed), then the radiation,  and once radiation completes -  some form of hormone theraphy - either tamoxifen or one of the Aromatase Inhibitors -  depending on whether you are pre-menopause or post-menopause.

    I understand that you want to know everything yesterday - I was the same way ...  things just didn't happen soon enough for my comfort.  It does feel like you're just waiting waiting waiting.  I hope your wait will end soon and you'll  get your treatment plan in place. 

    Hugs,

    Doreen 

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    My IDC was 2.2 cm and I had the Oncotype DX done which gave me a score of 11 and no chemo.  You really need to have the test done.  Good Luck!

    · Share on FacebookShare on Twitter
  • searching4
    searching4 Member Posts: 55
    edited October 2008

    Yes, it's chemo first although my oncologist had me start the radiation anyway while waiting--  but the first request was lost, so I waited 4 weeks for my result, not 2.

    · Share on FacebookShare on Twitter
  • hopefullady
    hopefullady Member Posts: 210
    edited October 2008

    Hi,  I don't mean to confuse you, but ask your doctors about the sequence of your treatment.  I had lumpectomy, then radiation (mammosite) and now am undergoing chemo.

    Chris 

    · Share on FacebookShare on Twitter
  • scarp
    scarp Member Posts: 104
    edited October 2008

    Mine was 1.2 cm, Stage 1, grade 2, ER/PR+, Her-2-, 0/7 nodes, age 46, lumpectomy, history of BC (mom) braca1 neg and braca2 unspecified.  Before onco type they were leaning toward the chemo since it was over 1cm, my age and history.  Onco type was a 15 and after a lot of debating decided that I would go for CMF, it seems less toxic.  I begin on 10/28

    · Share on FacebookShare on Twitter
  • swm63
    swm63 Member Posts: 32
    edited October 2008

    what is cmf?

    · Share on FacebookShare on Twitter
  • scarp
    scarp Member Posts: 104
    edited October 2008

    Cyclophosphamide, methotrexate, and 5-FU.  there is a tread under "help me get thru treatment"

    · Share on FacebookShare on Twitter
  • otter
    otter Member Posts: 6,099
    edited October 2008

    Chris (hopefullady), you said this:  "Hi,  I don't mean to confuse you, but ask your doctors about the sequence of your treatment.  I had lumpectomy, then radiation (mammosite) and now am undergoing chemo."

    I'm pretty sure the most common sequence is lumpectomy, then chemo, then rads, and finally estrogen blockade (tamoxifen or an AI).  Chemo usually precedes radiation, unless the rads are Mammosite like you (Chris) had.

    otter 

    · Share on FacebookShare on Twitter
  • saraand45
    saraand45 Member Posts: 47
    edited October 2008

    Hi,

    They are recommending chemo becaude of size of tumor, then radioation, not a candidate for mammosite because of location of tumor. They want taxol oncw e every 21 days and cyclohosphamide.  What is that like?  I have to make decsion soon.  Although they are still trying to treat an infection post surgery.  Seems to be getting better now. Did skin punch Tuesd ay to rule out IBC.  All my doctor think it is very unlikely. Thanks for all you help.

    Hugs,

    Tina

    · Share on FacebookShare on Twitter
  • ethansmimi
    ethansmimi Member Posts: 2
    edited October 2008

    Good Evening,

    I have very similar dx.  Tumor 2.5 cm 0/3 nodes ER+/PR+, HER2-.  The Oncotype dx test is a very good tool.  My onocologist used that and I was borderline to have/or not chemo.  We chose chemo, 4 cycles.  Really not that bad.  Cytoxan and Taxotere.  I am now undergoing 33 radiation treatments and have started Tamoxifen. Good luck.

    · Share on FacebookShare on Twitter
  • saraand45
    saraand45 Member Posts: 47
    edited October 2008

    How bad were the side effects?  Did you lose your hair? Were you able to work?  MY oncologist  wasnts 4 cycles of Cytoxan  and Taxatore too. Plus 33 rads and tamoxifen.  Thanks,Tina

    Good luck to you too!!! 

    · Share on FacebookShare on Twitter
  • scarp
    scarp Member Posts: 104
    edited October 2008

    Think I made a mistake...The "C" in CMF is Cytoxan.  start Tues, so not sure what its like yet but I hear CMF is very doable with minimal hair loss, less nausea and less risk of low white blood cell count.  Can bring on early menopause which doesn't matter cuz the estogen has to get stopped to.  In 78% Estrogen +

    · Share on FacebookShare on Twitter
  • saraand45
    saraand45 Member Posts: 47
    edited October 2008

    How were yor side effects.  Did you lose your hair? Were you able to work. Your diagnosis does look alot like mine. I think I am leaning towards doing it.

    Thanks,

    Tina

    · Share on FacebookShare on Twitter
  • scarp
    scarp Member Posts: 104
    edited October 2008

    Tina - I will let you know the SE after Tues.  Got to  "Help me get thru this treatment" and then to CMF question.  There are a lot of pages to read but if you go thru the 1st few, you'll get a good idea.

    · Share on FacebookShare on Twitter
  • mary6204
    mary6204 Member Posts: 373
    edited October 2008

    Sara, Sorry you have to go through this, but Good luck, you'll be fine.  I didn't have the chemo you will have, but I survived and so will you. I had taxotere, carboplatin and Herceptin

    You'll look back and be glad you did it.  Anything to keep cancer from coming back is good.  God Bless and hope you get all your questions answered.  I finished 3-1/2 months ago and I feel fabulous.  Mary

    · Share on FacebookShare on Twitter
  • pdb
    pdb Member Posts: 68
    edited October 2008

    Sara - Did you discuss the Oncotype DX test with your oncologist? Is he/she not considering it solely due to tumor size? I see several women have already responded that they had tumors larger than 2cm that were grade 1, just like you. I fall into that category as well. My Onc was originally gung-ho on Chemo, just based on tumor size and my age at the time (45). But I pushed hard for the test (it was fairly new back in 2005) and based on my low risk score, all doctors said chemo was no longer an option. The risk of side effects were much greater than any potential benefit.

    I know this is a difficult decision and one that only you can make. Just seems that with a low grade tumor, your doctors should be offering this test as a way to better customize a treatment plan that is the best it can be for you and your specific situation.

    Best of luck to you as you move through this journey. Stay strong, Fight hard.

     Phyllis 

    · Share on FacebookShare on Twitter
  • PinkLaddy
    PinkLaddy Member Posts: 133
    edited October 2008

    Hi Phyllis,

    I'm awaiting on my test as well. Can I ask what your score was?? I'm 47 and just curious since you were about the same age.

    Thank You,

    Jerri in AZ

    · Share on FacebookShare on Twitter
  • vision4utoo
    vision4utoo Member Posts: 138
    edited October 2008

    Hi - Just finished 4 rounds of Chemo - I have similiar dx Saraan45.  No rads and I am not complianing. Though I am beginning to question why?  I did ask for the Oncotype (16) for me which is intermediate?  I had a mast in July, due to multicentric, multifocal nature of two tumors I was not candidate for Lumpectomy.

    Saraan45 ~ the SE's of chemo are doable, it is normal to be very apprehensive of the unknown and chemo is serious medicine.  I lost my hair (on most of body), but didn't mind so much as I don't identify it as defining who and what I am - I am so much more than my hair or breast!  We all are.  SE aren't pleasant - not going to say otherwise, but I didn't feel like I wanted to die or anything from them - more of a nuasiance and everyone reacts differently - I was nauseaus and was dropped head first into ChemoPause, hot flashes, sweats, mood shifts(crying) Ugh! The worst for me has been the extreme fatigue and nueropathy in hands and feet, now that I am on the other side - feelings are beginning to come back and feeling a bit more like me again!  Take care and visit site often - many wonderful women here to help with you questions and give emotional support!  hang tough!

    · Share on FacebookShare on Twitter
  • pdb
    pdb Member Posts: 68
    edited October 2008

    Hi Jerri

    My Oncotype score was a 17.....tail end of the "low risk" category. Good luck to you....hope you get good news when you get your results.

    Stay strong,

    Phyllis

    · Share on FacebookShare on Twitter
  • scarp
    scarp Member Posts: 104
    edited October 2008

    pdb - I wish I saw your oncologist because my score was a 15.  I was 1.2 cm, stage 1, grade 2 ,all else the same and they have left it up to me.  Needless to say, I begin CMF tomorrow.

    · Share on FacebookShare on Twitter
  • PinkLaddy
    PinkLaddy Member Posts: 133
    edited November 2008

    Hi All,

    Now here I am with this Decision. My onocotype was 9 my tumor was 2.8 IDC, Stage 2 and Grade 2. Will see the Medical Onco. tom. for the first time. My surgeon and Radiation Onco. both stated I will need some sort of Chemo. I just don't want this to return at all. This last week I had a friend who went for her 1st 6 month Mammogram after Chemo. and Radiation and now they are doing a Biopsy.

    I'm so Flustered!!

    · Share on FacebookShare on Twitter
  • swm63
    swm63 Member Posts: 32
    edited November 2008

    scarp.....how was your first treatment on the 28th??

    · Share on FacebookShare on Twitter
  • hostanut
    hostanut Member Posts: 178
    edited November 2008

    saraand45,

             My tumor stats were exactly like yours, except mine was 2.5 cm........that 's the only difference.  I opted for no chemo, but rads followed by Arimidex instead.  Both my med. onc. and bs said if they felt I really needed the chemo, they'd push me to do so.  They didn't, and I decided not to.  It was early stage, with low aggressiveness, no nodes........at the time, I was not encouraged to have the Oncotype DX test done.  I probably would have the test run, if I had it to do over again.  Anyway, I'm 2 1/2 yrs.out and doing just fine.  Hope this helps.     Nancy

    · Share on FacebookShare on Twitter
  • PinkLaddy
    PinkLaddy Member Posts: 133
    edited November 2008

    Hi Nancy,

    Thanks for the reply. I did see the Med. Onco. yesterday and really the Oncotype was higher than 9 but both my BS and Rad. Ono. and now the Medical Ono. all say Chemo then 2 years of the Tamo. then switch to the Arimidex I think because of the age factor with the hormones. They were looking at other numbers as well and the age. Now the decision which kind of Chemo but have to do a Body scan then get a port.

    How are you doing on the Arimidex?? Any side effects??

    Thank You,

    Jerri

    · Share on FacebookShare on Twitter
  • hostanut
    hostanut Member Posts: 178
    edited November 2008

    Jerri,

          My grade was 1 and stage IIa because of the size.  I'm 60 now and was diagnosed at 58, so that was a factor in my consideration of chemo or not.  Yes, I am on Arimidex and the first autumn I was on it, my hands felt stiff in the AM, but seemed better as the day wore on.  I AM getting older, and so now I tend to have stiffness other places as the weather turns colder (in WI) but I have had no major problems with the Arimidex.  I started on Tamoxifen but developed an all-over rash......due to a drug-drug interaction with Singulair.  All my docs were scratching their heads, till I saw my allergist the following spring and he told me why that happened.  In the meantime I'd been switched to Arimidex and all's well.  Hope all goes well for you, too!   Nancy

    · Share on FacebookShare on Twitter

Categories