chemotherapy or not

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cenerentola72
cenerentola72 Member Posts: 6


Hi , i am 41 years old and i live in Italy.sorry for my english

I have low grade  breast cancer , 6 mm. but 3 nodes positives. er . pgr pos. herb b2 neg.

I am waiting for oncotype test this week.

some doctors say chemotherapy , some say tamoxifene and decapeptyl..

I dont' know what to do and i am scared to take the wrong decision...

Is ther anyone in my situation..

I am strongly need some advice...

thanks a lot

 

 

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Comments

  • mdg
    mdg Member Posts: 3,571
    edited November 2013

    Buongiorno!  I am sorry you find yourself here.  Like all of the decisions we make in this process, chemo is a personal choice.  There is no right answer...only the right answer for you.  Make a decision you can live with and have no regret.  I was 45 when diagnosed with stage 1 BC.  My pathology showed LVI even though I had clear nodes.  I chose the chemo but one of my main reasons was that my son was only 4 when I was diagnosed.  I wanted to do everything I could to be here for him.  I am on tamoxifen now for a few more years.   There are so many things that go into your decision making and some of them are related to your life situation.   I know you will find many women here that had just as hard of a time deciding on chemo.  Buona fortuna....

     


     

  • cenerentola72
    cenerentola72 Member Posts: 6
    edited November 2013


    are you italian ? From where ?

    I live in Perugia near Assisi

    My child is 5 ... some doctors say it's safe only tamoxifene but i don't know....

    Grazie  for your kind reply..As you knlw my life has changed in the last month....

  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2013


    cenerentola72


    Welcome to our little community. I am sorry you have to join us, but know that you are not alone in this horrible journey. I didn't have a choice, I had to have chemotherapy if I wanted to try to get rid of the cancer in my bones. However let me say that it wasn't as terrible as I imagined. There were lots of good drugs to prevent nausea and vomiting, which was one of my biggest fears. Fortunately I own my own business so was able to set my schedule according to my treatments and recovery. I also have no children left at home so I had my husband to help me on the tougher days.


    Some oncologists want to throw everything they have at the cancer, therefore strongly recommend chemo. Perhaps once your oncotype test comes back you will have a clearer picture of what you want or need to do. Good luck to you. Please keep us posted.


    PS I was in Italy 10 days ago in the Tuscany area. It was gorgeous and the people were outstanding! I love your country.

  • mmvh
    mmvh Member Posts: 5
    edited November 2013


    Don't worry about it too much right now, just gather information which is why you are here, (so good for you!)


    I am also trying to make that decision about chemotherapy and I have an oncotype score of 16 but one lymph node involvement that was 3 mm. As I understand it, if it was 2 mm or less they would not be recommending chemotherapy to me. Once you get the score they may have a different view but also your age would be part of the decision as well. In my case, two oncs have recommended I take part in a trial where I could be put in a group having chemo & hormone treatment or just a group with hormone treatment. And the third said I should do chemotherapy. Its a tough decision.


    Good luck!

  • NoTime4This
    NoTime4This Member Posts: 21
    edited November 2013

    I  also 41 years old. I was hoping to avoid chemotherapy more than anything, but since a micro metastasis was in one node, my doctors said I needed it. I was only able to do part of it because of side effects. I wish I could have completed it, because my oncotype is high. Soon I will have radiation, then tamoxifen for ten years. Luckily I go to a state of the art cancer center and trust my doctors.

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 269
    edited November 2013


    cenerentola72 - The Oncotype test score should help you decide. I never had it done, so maybe you could ask your oncologist to do it. You living in Perugia is making me crave Perugina chocolates. I've been to Assisi 20 years ago but didn't make it to Perugia.

  • cenerentola72
    cenerentola72 Member Posts: 6
    edited November 2013


    my oncotype test is  3 . So even if i have 3 node positives i think my decision is no chemo...

    Please someone tell me if it is the right decision....

    Or if not....

    Bye

  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited November 2013


    Cenerentola - I wanted to chime in. Some doctors here in the US do not do the oncotype testing to node positive cancer because they essentially assume that you need the chemo because the cancer has already escaped the tumor site so to speak. My mom had a 0.5cm (5mm) tumor - stage Ia - no node involvement. She was told she did not need chemo, and the chemo would not help her. She went to Stage IV in 8 years. Fortunately, she has been Stage IV for over 13 years now (and lived much longer than the initial oncologist had predicted - two years), but she regrets every day that she has not forced the doctors to pick the aggressive treatment route. There would have been no guarantees that she would not have progressed to Stage IV even with the chemo, but at least she would not be regretting today that she did not do everything possible to fight it. I was 40 when I was diagnosed last year; and I too have two small children. I always made my decisions based on the assumption that my chance of recurrence may be 100%. Individually, for each of us, we either have a 0% chance of recurrence or a 100% chance of recurrence; these tools, such as oncotype, are JUST tools. There is a margin of error in them; and in some instances, a tumor that comes back low recurrence risk on oncotype has come back high recurrence risk on a different test performed. As a young woman with a young child, you need to think about hitting this cancer as aggressively as possible. I was node-negative but had a very high Ki-67 and very high Oncotype; so, for me the choice was very easy. I understand that everyone has a different approach and needs to make the decisions for themselves. I had one of the hardest chemo regimens - dose dense AC plus 12 rounds of Taxol. Even that was not bad. I think many people hesitate about chemo because they think it will be awful - it seriously was not that bad. And even it is the most awful thing imaginable, it is still better than losing your life to this disease. And there are other chemo alternatives - maybe you can do the CMF regimen which some practioners call the "chemo light". Once you go to Stage IV, the cancer is still treatable but no longer curable. I would not want any woman (or man) fighthing this disease to have my mother's regrets. Living with Stage IV disease is not easy. It is hard and painful. (This is the cold hard truth). She had 8 surgeries for broken bones - for some sites, she had to have surgeries twice. She had to have surgery TWICE on her entire spine (each lasting over 12 hours and extremely high risk). She had both legs broken (pathologically - meaning due to the cancer) several times. Bottom line is that I wish each and every one of you the best; and I hope you never have to deal with this disease again. And if you are Stage IV - I hope, wish and pray for a cure every single day.

  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2013


    YoungTurkNYC -


    What a thoughtful and informative post to cenerentola72. I might have not chosen chemo if I were in her shoes but you certainly layout an arguement for hitting the cancer with both barrels especially with her age and young children. There was a time earlier this year I thought of not doing anything other than the surgery, even knowing mine had spread, but my adult children and son-in-law wrote a heartfelt letter begging me to do everything I possibly could to fight the cancer, even knowing what a huge sacrifice it would be to undergo chemo. It was that letter that changed my mind and clarified the reason I had to fight...my children and grandchildren. I don't have any regrets doing so and even though it was a struggle, if it extends my life, it was worth it.


    My thoughts and prayers to you cenerentola72 as you figure out what's right for you.


    Amy



  • cenerentola72
    cenerentola72 Member Posts: 6
    edited November 2013

    Thanks a lot for your posts..

    Well i am a little more scared after YoungTurkNYC , but I decided anyway to dont' do chemotherapy.

    My situation is  in the gray zone...

    But you and your mother can have regrets,

    Nobody in the world advice chemotherapy with 0.5 mm cancer and o nodes.

    except in the case that is triple negative, Herb b2 positive or G3

    For me is different . But my heart say no chemo so i will go on with tamoxifene

     

    Thank you everybody for the help

  • Lily55
    Lily55 Member Posts: 3,534
    edited November 2013


    Cenerentola - I am chiming in to give you some support. was diagnosed at Stage III and it was in my lymph nodes too but I still refused chemotherapy even without an Oncotype test. I know, 18 months later, that it was the right decision for me so all I can say is trust yourself, there are many many mysteries about cancer and cancer treatments and we all have more power than we think we have.


    Good luck

  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited November 2013


    Cenerentola,


    I wish you all the best with your decision.

  • msphil
    msphil Member Posts: 1,536
    edited November 2013

    hello sweetie, I was diagnosed at 42, in process of making wedding plans ,I wanted the lumpectomy, but I wanted to do whatever would allow me the most time I could get. so I went with mastectomy with chemo and rads and 5 yrs on tamoxifen(Praise GOD) I am now a 19 yr Survivor,each is a individual choice, BUT I want what would give me the most time here with husband and family.  msphil ( (idc, stage 2, 0/3 nodes, L mast, 3 months chemo before and after surgery,rads(7wks), and married, and 5 yr tamoxifen)                                                                                                      

  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2013

    Cenerentola, No one can tell you what you should or shouldn't do - and they shouldn't. It is your decision and your life. All we can offer is our own personal experiences and decisions we made. There are no right or wrong decisions if they are ones you make with the information you have. A 3 is a very low Oncotype score; mine was 11. Of course the test isn't fool proof - there is no such thing when it comes to the C word but it does provide you an indicator, albeit a bit flawed, of just how aggressive your cancer is and based on what doctors know what the percentage is of a recurrence. Keep in mind the Oncotype test is done on your particular tumor - no other factors are considered like family history, etc. Again it isn't infallible but for now it is a test a lot of Oncologists are using to determine treatment plans so as not to overtreat women. I for one am grateful for it. My tumor is deemed non-aggressive, smaller than first thought and is one that would not benefit from chemo. One thing to keep in mind once you decide don't second guess yourself or look back. You are the one making the decision about your life. Good luck and keep the faith. Diane

  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2013


    this is such a hard decision. the only advice I have is to try to make a decision that will let you sleep soundly at night. All the data in the world won't help you do that..... Like you, I had young children when dx. i was in the "gray" area on the oncotype--- I decided to do chemo and I have not worried about cancer for a minute since I finished. I am not suggesting that you do or don't do chemo-only you can decide.... just try to think about what will give you the most peace years and years from now.....


    best of luck

  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited November 2013


    hi all- I searched out this sight because I'm also struggling with this. I had no lymph node involvement Dbl MX nov 5 with nipple/skin sparing surgery. All good then BAM oncotype DX results come in. 18 is my score. So I'm 46 with two kids 20 yr old and 6 yr old. Dr. Already said I'd be taking tamoxifen for five yrs which will bring the number down ( need to do more research on this haven't grasped the whole thing yet....maybe never will) then they said with chemo the numbers would be even lower. Sooooo confused. Need more info, any suggestions? Oncotype DX 101 or oncotype DX for dummies?! Help!

  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2013


    Nancy


    there is a report that comes with the oncotype score. Ask your onc to review it with you. It can give you more data to help make this decision. you may find, after reviewing it, that chemo only gives you a small % benefit-- which will help your decision. After you review it, ask your onc" If I was your sister/mother/aunt-what would you recommend based on all this data" When I asked my onc that she said"I would find it hard (my score was higher than yours) to NOT give you chemo"... that was all I needed. Did four rounds of A/C--- it was not fun, but I knew deep down that it was the right thing for me.... everyone is different. But you want to have as much info as you can before you decide.... you need to be able to sleep each night knowing you made the best decision for you.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited November 2013

    There are circumstances when chemo is clearly not advisable, but when there is a doubt, I would do chemo (which is what I did). It is not fun; but it is temporary, a couple months out of the whole rest of your life; which you want to be very long and completely cancer-free!

  • Annie54
    Annie54 Member Posts: 247
    edited November 2013


    Also be aware that bc can spread via the blood system - so negative nodes doesn't guarantee that cells haven't circulated to other places in the body. Chemo would help deal with those.

  • bluepearl
    bluepearl Member Posts: 961
    edited November 2013


    The + nodes and age would be of concern to me but follow your heart!

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited November 2013


    I was Stage 2, one positive node and 50 years old when I was diagnosed.


    This is an entirely personal decision and it is a very hard one to make because everything comes at you so quickly after diagnosis. It`s overwhelming and scarey.


    My surgeon put it this way for me: ``... the average North American woman lives to an average age of 84 years. You are 50 years old. You have 34 years to get through cancer-free and chemotherapy can give you a significant edge in accomplishing that ...``


    I opted for chemotherapy after reviewing all the factors that pertained to my pathology and situation.


    If you are struggling with the decision, perhaps see if you can see a counsellor or another doctor for a second opinion. The more information you can gather may help you make a decision that is right for you.

  • cenerentola72
    cenerentola72 Member Posts: 6
    edited December 2013


    Thanks for your reply..

    My oncotype is 3 so i decided to don't do chemotherapy but only ormonotherapy...Tamoxifene and goserelin  to  have ovarian ablation.

    I read that many of you don't agree but  i believe that chemo is not good for me...

    sometimes i have already doubts but i want to look forward...

    Thanks everybody....

     

     

     

  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited December 2013


    Thanks for all the responses to my last post about chemo etc. I saw my oncologist and the score 18 I found out was with tamoxifen already factored in. My oncologist said no chemo. Went to my BS and she totally disagreed with the oncologist. She said it's NOW that you have a chance to beat this! so I'm going for two more opinions. Then I get a call from my original oncologist and she says she wants to send my tumor out for mammoprint testing?? Another type of genetic testing because my case has been bothering her and she wants to make sure that not having chemo is the right thing to do! Ugh!! Never black and white always gray! I have two other appnt's set up with oncologists for fresh eyes. Has any one else oncologist hopped? Anyone know about mammoprint?

  • josgirl
    josgirl Member Posts: 231
    edited December 2013

    Nancyjeanne1967, Oh I have so onc hopped! I had 4 opinions before I settled on the last onc.  I even requested to switch since I didn't click with the first one I saw at the big research hospital.  I ended up going with the one I was switched to.  So I saw 2 at the big research hospital, one at the local clinic, and one at the VA (I am a vet so would qualify to have my treatment there).  Oh and my cousin has been a practicing onc for 30+ years and asked his opinion too.  I ended up going with the one who listened to me and who was doing his own research.  He is at the big research hospital associated with the University of WA.  He is doing a lot of research into pregnancy related BC and I want more kids so that is a great bonus.  But ultimately I appreciated the way he answered my questions and that I didn't get the standard of care response to everything.  I am an individual and am not content simply to survive this cancer.  I have other dreams and goals!  Plus your onc is the one that will follow you for the rest of your BC journey (course you can always change) - not your surgeon or radiation onc so it is more important that you have mutual respect.  So meet with the other oncs and see what they say (or don't say) and evaluate their resource structure as well (I liked that everything was in the same building and I only coordinated with one scheduler for all my tests/chemo/apts). 

    Also remember that you are the one to live with this so do your own research and read up on others experiences here...course everyone is different but as an aggregate it will teach you better than dr google will.  And come to your oncs office armed with questions (especially your next opinions as you can compare and contrast what they say).  Soemtimes it seems like they are robots spitting out the same thing and other times they have very different opinions.  You need to be your advocate here and push your docs when you don't understand or fully agree with something. 

    However, I will say that while I did chemo (TCx4 and had an oncotype of 31 and 1xpositive node so not sure if test is even applicable), I don't think it always the best thing to do.  While the oncotype test is a tool to reduce overtreatment by identifing those women who will not benefit from chemo, it is not foolproof.  However, neither is chemo.  Many women threw the kitchen sink at their cancer and still had it metastisize and others never did chemo and are cancer free.  There are so many variables and so much unknown.  And chemo comes with its own risks (both long term and short term).  Nothing about this journey is easy....but no choice in that matter.  The best thing I can tell you having just finished chemo is to do what you feel in your gut is right and then don't look back.  And only you can decide what your gut is saying....best of luck and pm me if you want.

  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited December 2013


    josgirl-I've realized through this journey that it's truly a crap shoot and yes I agree you have to go with your gut. Two surgeons told me to do a lumpectomy I chose bilateral MX and turned out my tumor was 2.5 cm not 1.7 and they found pre cancerous cells in my left so yea I agree with "go with your gut". When I was told no chemo I just knew deep down it wasn't right. I'm going for three more opinions because in a crime scene there's more to look at then just the DNA there's a a story to be told just like with cancer it's not just about the onco test score there's a whole story!! Thanks for your advise and help I really needed it hence the reason I came to this " community" because you guys are the ones that understand! Thanks!

  • hjpz
    hjpz Member Posts: 348
    edited December 2013


    Chemo is 100% a personal decision. I caught a lot of grief from my doctors (especially my pushy surgeon) 12 years ago when I refused to undergo chemo with Stage 1 BC but I stuck with my decision and treated my cancer successfully with Tamoxifen, Zoladex, and diet changes. Unfortunately for me I am BRCA2 positive so I developed a new cancer on the opposite breast. Chemo was again recommended to me before I even had surgery this time. I meet with my oncologist tomorrow to set up my treatment plan but have no plans to do chemo at this time. Luckily for me, my oncologist is pretty open to my questioning personality by now! The main thing is to be confident in your decision and not look back. Attitude plays a role in everyones treatment IMO so if you feel you are doing what is best it makes a difference.

  • KRISH
    KRISH Member Posts: 8
    edited May 2014

    Hi hjpz! i am also stuck at this moment whether my mother who is stage II A  , grade 2 with 0/15 nodes , ER strongly positive 90 % , PR 70 % , HER 2 neu  -ve , Ki -67 protein  -5% should undergo chemo + hormonal therapy. Our medical oncologist says it is not required but surgical onc who did mastectomy says it is required.  I consulted another surg. oncologist who says one should get 4 cycles of TC. Now i am confused. European soceity of medical oncology /Japaneese soceity of medical oncology says chemotherapy is not required in luminal type A cancers; it is only required if you have > /= 4 lymph nodes positive , grade 3 tumour or T3. Our medical oncologist has advised femara 2.5 mg/day x 5 years only alongwith Inj.Zometa every 6 month . Going through all available literature and what my medical oncogist told me , it seems appropriate to avoid chemotherapy at this stage because chemotherapy has its own side effects , particulary cyclophosphamide which is a part of every BC chemo regime. Cyclophosphamide administration increases the risk of bladder cancer 9 times with variable incidence of AML / Myelodysplastic syndrome . Its a very difficult decision to make. Being a medical professional myself ( interventional cardiologist ) , the decision is very difficult ethically , morally and socially. My mother is diabetic also. Medical onc says chemotherapy is less likely to offer advantage in luminal type A cancer with other comorbidities. Really  a catch 22 situation !

  • KRISH
    KRISH Member Posts: 8
    edited May 2014

    My mother is having STAGE II A tumour , 0/15 lymph nodes , ER strongly positive -90% , PR -70 % , HER 2 negative , Ki - 67 score - 5 % , grade 2 tumour ,  tumour size 2.7 cm. She is diabetic with Coronary artery disease  ( 50 % stenosis in LAD ) She underwent modified radical mastectomy with axillary lymphnode dissection. Her surgical margins are clear. Since Ki -67 score is less than 25 % and she is having comorbidities, her medical oncologist advised her only Femara 2,5 mg /day x 5 years and no chemotherapy . She has to take Inj. Zometa every 6 months and bio  D3 vitamin daily. Chemotherapy benefit is less in Luminal type  A cancer . its indicated only  when grade 3 tumour , lymph nodes > 4 or mets , recurrence risk based on oncotype Dx assay is  30 % or 18 -30 % . Chemotherapy acts on rapidly proliferating cells . Her proliferation index is 5 % ( Ki 67 )- so not so aggressive . Moreover she is on statins ( lipid lowering drugs ) and metformin for diabetes . New research shows people with diabetes on metformin and statin have less chance of metastasis as statin reduces RANKL - a protein requird for matastasis. Despite all this information, still its very difficult to say how cancer will behave as you correctly mentioned in your post. Its a difficult decision for chemo though i am a medical professional ( interventional cardiologist ). But still i believe what my medical onc says and will go ahead with femara tablets only.

  • KRISH
    KRISH Member Posts: 8
    edited May 2014

    My mother is having STAGE II A tumour , 0/15 lymph nodes , ER strongly positive -90% , PR -70 % , HER 2 negative , Ki - 67 score - 5 % , grade 2 tumour ,  tumour size 2.7 cm. She is diabetic with Coronary artery disease  ( 50 % stenosis in LAD ) She underwent modified radical mastectomy with axillary lymphnode dissection. Her surgical margins are clear. Since Ki -67 score is less than 25 % and she is having comorbidities, her medical oncologist advised her only Femara 2,5 mg /day x 5 years and no chemotherapy . She has to take Inj. Zometa every 6 months and bio  D3 vitamin daily. Chemotherapy benefit is less in Luminal type  A cancer . its indicated only  when grade 3 tumour , lymph nodes > 4 or mets , recurrence risk based on oncotype Dx assay is  30 % or 18 -30 % . Chemotherapy acts on rapidly proliferating cells . Her proliferation index is 5 % ( Ki 67 )- so not so aggressive . Moreover she is on statins ( lipid lowering drugs ) and metformin for diabetes . New research shows people with diabetes on metformin and statin have less chance of metastasis as statin reduces RANKL - a protein requird for matastasis. Despite all this information, still its very difficult to say how cancer will behave as you correctly mentioned in your post. Its a difficult decision for chemo though i am a medical professional ( interventional cardiologist ). But still i believe what my medical onc says and will go ahead with femara tablets only.

  • KRISH
    KRISH Member Posts: 8
    edited May 2014

    Hi josgirl totally agree with you. Every person is different and there are multiple variables involved. What may work for someone might not work for others. We have to balance the risks and benefits of chemotherapy .

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