deciding chemo or no chemo...help!

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mdg
mdg Member Posts: 3,571
edited June 2014 in Stage I Breast Cancer

You can see my stats below.  I am 45 years old.  I just got an oncotype score of 17 and my med onc is not recommending chemo.  I feel like it still seems a little gray....at 18 I would be in the intermediate range for oncotype, but at 17 I am in the low range.  I don't know what to think of it especially since my pathology report indicates "angiolymphatic invasion".  I am worried that even though SNB showed clear nodes, this has set the stage for cells to move around my body and we don't know if that has occured yet fore sure.  I am having a hard time finding valid information on the "angiolymphatic invasion".  All I can find is that it suggests a poorer prognosis for distant recurrence but nothing really tangable.  I don't know what to do!  My med onc says she thinks the benefits don't  outweigh the risks but she will give me chemo (TC X4) if I want it for peace of mind.  She said I don't have aggressive cells and chemo is looking for more aggressive cells to kill so it may not really be as effective on a lower grade/ER PR+/HER- tumor.  She said that my oncotype score of 17 means I have an 8-14% of distant recurrence in the next 10 years and that they give you the average (11%) for your recurrence score (eventhough it is a range because the confidence interval is 95%).  So if I am really at 8%, I may benefit 1 1/2% from chemo or if I am as high as 14% I may benefit 3% from chemo, but again we don't know if chemo will actually do anything to your slower dividing cells.  Is there anything else I can look at to help make this decision?  I am getting a second opinion just in case.  Any ideas???  This is really a tough one.  I am doing BLMX with reconstruction next week - and I thought that decision was hard. 

Comments

  • lago
    lago Member Posts: 17,186
    edited January 2011

    I would ask you onc if it were her sister what she would recommend. Also keep in mind that you will be doing some kind of hormone suppression. If you decide against chemo you must commit to that hormone suppression for 5 years.

    Grade 2 is intermediate grade. Grade 1 is low grade.

    and nothing wrong with getting a second opinion from another onc.

  • mdg
    mdg Member Posts: 3,571
    edited January 2011

    Lago:  I did ask her what she would do.  I have a young child (4) and my onc is pregnant with her first baby.  SHe said she would not do the chemo because she thinks the tamox will be the best way to deal with it and the benefits don't outweigh the risks.  SHe also said that her personality is figured into that (she must be saying we don't have the same personalities).  In general, I am type A, more a worry person and very analytical.  She must be more laid back than me. 

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited January 2011

    i would also get a second opinion, just so you have another

    viewpoint...many oncs recommend chemo just to cover them

    selves,..but remember chemo can have serious side

    effects also...many times that is not mentioned....looks like

    you will need somekind of anit estrogen therapy as well.

    You will rest better having two different doctors views..

  • susand
    susand Member Posts: 226
    edited January 2011

    mdg, I agree with lago and socallisa about getting a second opinion.  After my first oncology consultation I decided to get a second opinion.  The second oncologist gave me a very different and more aggressive approach to my chemo and following treatment.  So.....I decided to get a THIRD opinion!  I traveled to Memorial Slone Kettering Cancer center.  When the oncologist there gave me the exact same treatment plan as the Second oncologist I was then comfortable making my decision.  You can never go back in time so make sure you take all the steps you need to feel comfortable with your decision.  Best of luck to you. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    That's a tough one. I would have no hesitation to say "no chemo" except for the angiolymphatic invasion.  Personally, that would make it a little tougher for me.  I tend to lean more towards the chemo may do more harm than help ~ in lower onco score cases.  Sometimes people still get recurrences even after chemo.  Unfortunately, nothing is guaranteed with bc. :(

    My oncologist actually did tell me what he recommended would be the same for his wife or daughter. We have very similar stats, including age.

    I'm a little surprised  you have all this info BEFORE the BMX?  Did you have a lumpectomy first? I thought they need to do final pathology and oncotype score from the tissue taken during surgery?

    It sounds like you are doing alot of research and hopefully that will empower you to make the decision that feels best for YOU. :)  Hugs to you and hopes for a smooth and speedy recovery from your surgery.  I am 7 weeks out and feel pretty damn good. :)  

  • Alyad
    Alyad Member Posts: 817
    edited January 2011

    I agree that a second opinion and even a third would be good.  And like you onc said- your personality does figure in to it. I wasn't going to do chemo until I had a + SNB, despite it being reccomended for me (due to a high Ki67 score- lots of dividing cells- the ones that chemo kills- but at the time I didn't have a great understanding of what that meant). 

    I am somewhat of a worrier too- I was in a grey area whether to do radiation or not- I had a mast but had false negative SNB and refused the ALND- so there could have been more. I got a second opinion on that and did the radiation. For me - I had to ask myself- if I do get a recurrence- will I beat myself up for not doing X treatment? and for me the answer was I wanted to do everything I could.

    I am still dealing with this a little- I stopped taking tamox after 6 months (not so much due to SE's, I was having some fatigue and I thought that might be causing it so I stopped- It wasn't the issue, tho I had another side issue that I had to switch antidepressant meds bc of conflict with tamox- which recent research has shown is not a problem as they thought... so now I am just hemming and hawing about whether I should go back on. I feel like if it does come back I might feel like- you idiot - you should have taken the Tamoxifen. And also I should lose weight and I should exercise more and eat better....

    Good luck with your decision-  it is really hard. For what its worth- chemo really kicked my butt and altho the loss of hair seems superficial- its not. I wouldn't do it personally unless it was clear it would benefit.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2011

    mdg

    I don't know what this lymphatic invasion issue is, but honestly, that would give me pause.  I think the second opinion would be critical--

    I was a worrier--- and I think I have said this before-- once I made the decision to go with chemo, I just never looked back.  And I have not lost a night's sleep since.  I think you know yourself well enough--- the % might or might not matter--- all helpful to make a decision-but you don't want to be laying in bed at night second guessing yourself.

    I did chemo because I have kids--- and I wanted to give myself the best possible chance to be around for a very long time...... it was an easy decision, but then again, my onco score was in the mid 20's.  

    Get the second opinion then really think about it---- I think the right answer will absolutely rise to the top for you--you are doing due diligence...... but knowing yourself is half the battle.

  • catbill
    catbill Member Posts: 326
    edited January 2011

    Hi mdg,

    I understand your struggle, particularly when you have the angioinvasion diagnosis to consider.  I think if I had the choice you're faced with, I would want to do whatever allowed me to say that I'd made a good decision, and I'll never have to look back.  It sounds like maybe you haven't reached a decision yet.  Getting another opinion may help solidify things for you, particularly if the second opinion is the same as the first one.  If you are still torn, then maybe chemo really would make you feel most comfortable.

    It's a really hard decision to make.  I thought a long time before I decided to take my oncologist's recommendation for no chemo.  In the end, I felt there was a lot of risk for minimal benefit if I did chemo.  I wish you wisdom , and clarity in your desicion-making, and peace once your decision is made.

  • bdavis
    bdavis Member Posts: 6,201
    edited January 2011

    mdg...

    I am 48 (as of yesterday) and a woman in her 40s is not a reason to skip chemo... I have 4 friends going thru this, age ranged 37-50,and all of us are in chemo except the 50 year old... and these are not friends I met at the cencer center, these are people i know.

    As much as chemo isn't fun, it does give you a better chance that stray cells aren't floating around your body that can show up later. I wouldn't want to think later, when I'm 55, 65... that I hadn't done everything I could do to prevent recurrance. My onc decided to do chemo without the oncotype because he said he would't sway his opinion with the oncotype... He said that my tumor at 1.9cm was a larger stage 1... I had a micromet in my sentinel Lymph node, meaning even tho it was small .38mm, it had migrated... not liking that... I think the only way I'd feel comfortable without chemo would be if I had DCIS... I am young at 48 and have a LOT of life left... so I am pleased with my chemo and agree with the decision.

    Good luck and get a few opinions.

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited January 2011

    I think I would go with chemo.   Cancer is such a nasty beast that even a small percentage point of amour is worth having.   But maybe I am biased becaused I did very well during chemo. 

  • mdg
    mdg Member Posts: 3,571
    edited January 2011

    Fearless - I am thinking the same thing exept my med onc seems like it's not going to do much.  I hope the second opinion helps tomorrow.  Maybe the other med onc can explain more and make this clearer to me..........this stinks, but I guess all of you already know that :)

  • susand
    susand Member Posts: 226
    edited January 2011

    mdg: good luck with your second opinion tomorrow!  Please keep us informed with how it goes.  You will have more tools to go into this appointment with since you have been thinking of it and asking questons.  Make sure to write any questions that are imortant to you down so you dont forget anything.  Its amazing how much a second opinion can help clear things up.  And if it doesnt...there is always a third:)

  • Sherbear
    Sherbear Member Posts: 215
    edited January 2011

    Like everyone else, I think you should get another opinion to ease your mind.  My oncotype was 17 as well, but I think due to my age (36), my oncs wanted to be as aggressive with me as they could.  At first I was shocked as the type I had was supposed to be slow growing (and I was WAY naive) so I got in with another onc for a second opinion, consulted over email with one at another cancer center (thanks to a friend), and talked to a private doctor who is also big into alternative therapy as well and they all said the same thing: chemo.  It all came down to my age they said.  I felt so much better after getting another opinion and it made the decision a lot easier and I was lucky and did really well on the 4 rounds of TC.  That being said, if my oncotype score was lower (say, under 10), I think there's a chance they would have just recommended hormone therapy, who knows?  Good luck with everything! :)

  • mdg
    mdg Member Posts: 3,571
    edited January 2011

    Sherbear:  I asked my med onc if they consider me young or at what age is the cutoff for chemo in this situation and she said age 35.  Well, I personally consider 45 young and am worried about no chemo.  I am also looking into a second opinion from one more cancer center out of state by mail. 

  • Sherbear
    Sherbear Member Posts: 215
    edited January 2011

    You are totally young!  Sorry, I hope my comment didn't come across wrong, I was just stating what they we telling me.  When you're premenopausal like us, they want to hit it with as much as they can and as hard as they can although I did decline a few other recommended therapies.  My one onc told me that if I was 18 or over in my oncotype score, they would have had me do AC-T, and I really didn't want that at all (and I could have just said no anyway).  I wasn't excited about chemo, but it went by really quick and I did well on it (with the help of an ND among other things) and after radiation I'm looking forward to detoxing it all out of me as much as I can.  Everyone is different though.  When you finally come to a decision, it will be what you feel most comfortable with and that is half the battle of getting through a lot of this :)  Good luck!

  • Halah
    Halah Member Posts: 352
    edited January 2011

    Good luck tomorrow, Maria! Ask the onc about the verbage in your path report if it will ease your mind.

    Mindy :)

  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2011

    MGD I just posted on the other thread. Get all the pages of the oncotype chart...look at where you fall, the margin of error, and the mortality rates. You can make a case for skipping chemo...or probably for doing it.

    On the node positive chart there was really only a benefit north of 20.5. My onc said up to a 20 he was fine with people not doing chemo. The bars on the node negative chart are a little different , because there is much better data.

    I think if you want to do chemo I would get a couple of opinions.

    You might also be a good CMF candidate.

    Good luck!!

    Good luck and feel free to message me...or look at my old threads on this.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited January 2011

    I was diagnosed on the hinge of 2001/2002 before the current therapies were available (including trastuzumab for those like me who are HER2 positive), and although I did chemotherapy and got through it like most do, I have had more time since that confusing time to learn more than I knew then. What I didn't understand then is that even if you or I have some remote likelihood for distant recurrence, the majority of the time the chosen chemotherapy is not effective because it simply doesn't happen to match up with the type of cancer cells one has. (Throwing the book at it doesn't mean the book will hit what you throw it at.)

    My older sister also had ER+ IDC 2 years before I did, and she chose not to do chemotherapy, just rads. She did only 2 weeks of tamoxifen. Neither of us have had any recurrence of IDC. She did not go through the months of not only chemo, but all of the support drugs such as steroids given with every dose of chemo (which is not mentioned as being part of the deal when one does chemo but are part of standard treatment). Nor are other support drugs that get incorporated into treatment mentioned at the time one is trying to make a decision, such as blood boosters, antinausea drugs, etc. etc. I was self-employed and doing chemo was a hardship for me, whereas she did not have to go through doing chemo, or having no choice BUT to work. She also has had 10 full years of NOT dealing with the vaginal dryness and loss of libido that has been part of my life, and which also is almost never discussed with us by the oncologists at the time of having to make such a hard decision.

    I guess I would want to at least have an oncologist who was straight about all of this with me before I ever did anything like chemo again, instead of being so dishonest about it all. If your onc, male or female, has openly addressed these issues with you as part of the deal without having to be prodded to do so, then maybe you are getting as much truth as there is about it from the onc.

    AlaskaAngel

  • Katherine_P
    Katherine_P Member Posts: 4
    edited January 2011

    I just went thru this decision over Christmas.  I'm 52, ER/PR +, HER -, 1 cm, neg nodes with an Oncotype of 17.  I have 10 year old twins which somewhat puts me in the "younger" situation.  However, I decided against the chemo - downside seemed higher than small potential risk reduction.  I just finished day 15 of accelerated whole breast radiation.  Will be starting Femara in about a week.  I was on HRT before I got the cancer diagnosis in November so having wicked hot flashes and am emotional wreck.  Has anyone hear anything on use of antidpressants for hot flashes with potential interaction w aromatase inhibitors?  I know there were issues with Tamoxifen.  Meeting with my oncologist this afternoon so would love some advice.

  • bdavis
    bdavis Member Posts: 6,201
    edited January 2011

    I am 48, never had the oncotype test because my onc said it wouldn't sway his opinion that I need chemo... I am young, in my opinion, and want to be as aggressive as possible, thinking I have a good 40+ years left in me (longevity runs in my family),,, I don't think anyone can really compare notes about chemo vs no chemo... there are way too many components. I, for example, had a micromet in my sentinel node, small but there nonetheless... I wouldn't be able to sleep at night not doing chemo. I need to feel that I have done everything I can do to beat this... If I had clean nodes, small tumor, clear margins, then chemo would have been a bad idea... only difference for me was .38mm micromet... that made the difference between chemo and not.

    Also I am ER+/PR+ 98% for both... so I am hugely estrogen / prog positive... so again, it was right for me... no ones stats wil match mine and it is all individual.

    Betsy

  • susand
    susand Member Posts: 226
    edited January 2011

    katherine, my oncologist said that Effexor is a very good antidepressant for hot flashes and there is no interference with AI's.  there are a lot of women on different threads that use it.  I researched it and decided against it, especially because my hot flashes mellowed out.  The only down side that I have read is that it is very hard to stop taking it and you have to ween off it slowly or you will have withdrawals.  You might want to check on the Hormone Therapy section.  I know there were lots of discussions reguarding effexor there.  good luck!

  • gutsy
    gutsy Member Posts: 391
    edited January 2011

    Mdg, I understand you will have a mastectomy in the next week. Would it not make sense to see what the pathology report states and make your decision from there. My oncoscore was 20 and I decided on chemo. It was tough, but I never second guessed myself. When I spoke to my surgeon she totally agreed that it was a good thing to do it. For her the age thing was very important. I am in my forties. I had chemo before my mastectomy. My final pathology report stated that there were no signs of invasive cancer, wide clear margins, and some residue of insitu cancer. Chemo does not work on dcis in the ducts. Before the chemo and during the chemo I did a lot of other things to keep my body as healthy as possible which really helped me bounce back after treatment.

  • nikola
    nikola Member Posts: 466
    edited January 2011

    I was 42 and in my onc's eyes that is young. He told me if I was 20 years older he would be comfortable of not recommending chemo, but being in 40-ties was way too young.

  • mdg
    mdg Member Posts: 3,571
    edited January 2011

    OK ladies....met with the other med onc this morning.  I reviewed my basic situation and stats with her and initially said no chemo for me.  WHen I reviewed my questions with her and concerns, she listened completely.  I asked why women in their 30's would benefit from chemo and a woman 45 would not.  She said they think because chemo especially puts younger women into menopause and there could be a link to less estrogen that way too.  She is looking into studies to examine this further.  We reviewed the adjuvent online and that clearly indicated a 5% additional risk reduction with chemo.  She said normally does not recommend chemo unless there is a 5% benefit at minimum...well that demonstrated 5% and the main driving factors were my age and the Grade 2 tumor.  She put in different numbers to see how it would respond (using a slightly higher age and lower grade tumor) and it appeared that the main driving force of my potential chemo benefit was age and the fact that I was not grade 1.  She also talked with me about angiolymphatic invasion and said it is understudied and not well understood.  I did look on the original path report from my core biopsy and that indicated no angiolymphatic invasion present.  This doc said that often times the core biopsy causes angiolymphatic invasion after (as the body responds to the inflammation from biopsy).  So..this is all very interesting.  By the end of the hour plus conversation she said she wanted to do more research on different options (risk reduction from blockiing overies and such too) to compare to benefits of chemo.  SHe wants to review my case at tumor board next Friday and she wants to call me back if she has some studies for me to review before then.  At the end of our conversation, she was leaning towards a chemo recommendation.  Very interesting...she too would do TC X4.  I feel a little better feeling like she listened to me and was willing to really evaluate what is out there for me.  I meet with her again in 2 weeks to review all of this.  I feel really good that I went to her.  I just feel like she is more analytical than me and she was ok with the fact that I was so well read on these topics/studies and said "you are doing exactly what you should be doing to learn and understand all of this - good for you!".  I really liked her.  I will keep you posted.......obviously it will take a few weeks to figure out what I will actually do.  I am leaning towards chemo unless she comes up with a good reason why I shouldn't. 

  • susand
    susand Member Posts: 226
    edited January 2011

    mdg, it sounds like you had a great appointment.  Please keep us updated as to what the tumor board thinks and what you decide.  I know its such a difficult decision.  If it makes you feel any better I have heard that the TC X4 is easier on the body than ACT (not that any chemo is easy).

    bdavis, I also had micomet in my sentinal node.  Today someone posted an article that might make you rest even easier!  it was on the clinical trial forum called "analizing the sentinal node for tiny mico tumors". It was very an encouraging article.

  • bdavis
    bdavis Member Posts: 6,201
    edited January 2011

    Thank you susand... read the article and is consistent with both bs and onc... makes me feel a bit better.

  • bdavis
    bdavis Member Posts: 6,201
    edited January 2011

    And MDG... TC isn't bad... if you need it, you should be fine.

  • lago
    lago Member Posts: 17,186
    edited January 2011

    I just finished 6 rounds of THC. Granted you don't have to do the H. To be honest it wasn't too bad. The SE just started to get to me at the 4th tx but still not too bad. During the first 3tx  I was working out most days… I'm 49 (for a few more weeks Tongue out )

    Good luck. Hope your SE are minimal.

  • nred2002
    nred2002 Member Posts: 59
    edited January 2011

    mdg, thanks for the info from your onc about angiolymphatic invasion.  My biopsy showed no evidence, but the surgical pathology report did.  It makes sense that taking a chunk of tissue out of the tumor would cause it to "react".  I am going to ask my new onc about this.  The previous one I went to (I'm also in the Detroit area) practically started the conversation with chemo, didn't even discuss Oncotype until I brought it up, and never pulled up Adjuvant Online for me or give hard data--and obviously in a hurry.  I think having an onc you can trust and relate to makes all the difference in the world, given the important role they play. 

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