DO I NEED CHEMOTHERAPY? I HAVE TO DECIDE NEXT WEEK

HY66

Hi everyone,

This is my first post - I was diagnosed on Mar 5 and had my lumpectomy on Mar 18.

 I will be doing 30 rounds of Rads (5 days a week for 6 weeks) and 5 years of Tamoxifen but have to decide next week whether to do chemo as well.

I met the onco yesterday and while he says the choice is mine, if I say yes, he will put me thru 4 rounds of Cytoxan and Taxotere 3 weeks apart.

AdjuvantOnline was down (still is) so he couldn't give me the precise additional benefit chemo would offer, but based on my profile, it's not going to be huge.

My BS is leaning towards no chemo and so am I, but it's so hard to make this decision.

I'd really appreciate hearing from anyone who's been in the same situation and how they arrived at their final decision.

Diet and lifestyle-wise, I'm going organic as much as possible, minimising red meats, exercising more and de-stressing as much as possible.  I'm 42, married with 3 kids, 16, 15 and 11.5 years old.

Many thanks in advance,

HY

nelia48

So sorry you had to join this group, but glad you are here for the support and information!  It's been such a help and encouragement for me.

I can't begin to give good advice here for you.  Since I was stage 3b and had lymph node involvement, I took everything I could get!  My oncologist didn't seem to give me a choice -- just said, "This is what we're going to do. . .!"  And I never questioned it. 

I'm sure others will come by who have the same diagnosis as yours and give some better info and opinions!

I'm hoping for the best for you no matter what you choose to do!

Cora

http://www.hiddenrichessecretplaces.blogspot.com/

KEW

Perhaps you should ask your doctor to run an Oncotype DX test.  Do you have to decide on chemo next week for sure? It takes several weeks to get the oncotype score back. Maybe you want to consider a second opinion.  It is a tough decision, the toughest I've ever made, but I felt empowered by having my score.  I choose not to do chemo, but I had the score and I'm being kind of aggressive by having a hyster/ooph.  Everyone has to make their own decisions, but we need as much information as possible, and that's why I suggest the Oncotype test. I don't see anything in your signature that would prevent you from having the test.

http://www.genomichealth.com/OncotypeDX/Index.aspx?Sid=33

I wish you the best in making your decision.  Lots of hugs.

 Karen

KEW

According to the website this group distributes the test in Australia, Healthscope Limited (Gribbles Pathology), it doesn't name a city.  I hope it helps.

Karen

shejoh

Hi....so sorry to hear about the cancer..I am also diagnosed same exact type of cancer..stage 1, 1.5 cms, ER/PR +ve...HER -ve...I am 34 years..I am waiting for my oncotype DX results...if I get a benefit of 10% less chance of recurrence in future by chemo...I would take it...it's a quite a struggle for 3 months...but still long term benefit is more...I would listen to the oncologist as they have more knowledge of medical treatment,..My BS did suggest chemo...with the same situation...The only option I wouldn't take chemo..if the oncotype dx. is very low...if I don't have even 10% benefit out of it then i woukdn't take it..second opinion would be a very good option too.

Sukiann

I'm in the same boat as you.  It is so difficult.  I'm awating the oncotype dx test to help me make my decision.  My onco is also leaning towards no chemo and i have a bigger tumor (2.5 cm) and now an additional dx of the sentinel node has micrometastis after a second staining (.5 mm) not much but it is worrisome to me.  I'm 44 with 2 kids 12 and 15.  I want to be around to guide them through life.  I don't know what to do either.  Do we put our bodies through 3 months of toxins to kill off any potential cancer or do we say no and go with just the hormones (although I have to have my ovaries out as i cannot take tamoxifin because they can cause blood clots and I have a family history of them).  The oncotype test will help.  I hope you can get it done.  Good luck and let us know what you choose.

WLL

My oncologist never gave me an option of not taking chemo. I had Stage 11A with no lymph node involvement. With chemo I was told that your risk of it returning drops.

My husband worked with a man that had colon cancer 6 yrs ago and he decieded not to have chemo and his oncologist told him if he did have chemo it would return in 5-6 yrs. It did and he has it all through his body, stage 4. He is currently going through chemo now, I just hope he makes it, he has small children. Just wonder if he had chemo before if it had returned.

 HY66-- Good-Luck with you decision

otter

HY66, you asked this:  "I'd really appreciate hearing from anyone who's been in the same situation and how they arrived at their final decision."

If you were in the U.S., your final decision would probably be based, in part, on the results of an Oncotype DX test.  KEW and shejoh mentioned that test.  It's designed to be used on tumors that are ER+ (like yours) and early stage (negative nodes), to predict the probability of distant recurrence (metastasis) and the likely benefit of chemotherapy.  My Oncotype result was used along with all the usual variables, like tumor size, tumor grade, my age, etc., but the Oncotype score swayed the balance and led 2 oncologists to recommend chemo for me.

Even so, 5 years ago decisions like this would not have relied on Oncotype testing, because it wasn't readily available then.

Hugs...

otter 

cs34

dear HY66,

this is a struggle and a difficult decision. i wasn't given the choice however, when the dr's advised me they feel i was "cured" by the operation alone, i asked myself at that moment, "if given the 'choice' would you opt for chemo or not?" and my answer to myself was yes. again, it's a very personal choice.

like i said, i have to do chemo and let me tell you, i am terrified but all i can do is picture myself 5-10 years down the line in the dr's office, yet again, hearing the news that i have cancer again. i will do EVERYTHING in my power to avoid that!!

i wish you all the peace and insight to make this decision. once you make the decision, don't look back! :-)

Anonymous

Well, here is my story -

My stats are similar to yours - 1.6cm IDC, grade 2, 0/3 nodes and 44 years old with two kids 10 and 11 (almost 12).

I am in Seattle, and yes, the oncotype score was an important part of my decision.  My score was 23.  

My oncologist also said that my age made chemo important - if I were, say 55 and post menopause she would have been more comfortable with skipping chemo.

I also had two opinions, which were the same with the same chemo recommendations.

I would get a second opinion and try to get an oncotype test done.  I started chemo a month after my lumpectomy, so I would think you have a little time to make this decisoin.

Good luck with this - we are all here for you whatever you decide!

Susan

Alo123

Good luck with your decision.  If you decide to do it you will get through it.  I just finished my four doses on Wednesday for a small .7mm IDC.  I am so glad I did it.  Not that I loved the chemo...but wanted to do everything I could at this time. 

Emily2008

Definitely look into the Oncotype score as this will provide an extra bit of information for you and your docs to use as you make this decision.

My score was 14, which was on the lower side, but I also had 2 tumors, am BRCA 2 pos, and was 35 at dx.  All these pieces of info factored into the final decision.  I also got the opinions of 2 oncologists, who both suggested 4 rounds of AC, which I completed in Nov.

This is a very hard decision, so my heart goes out to you.  Do your research, get opinions, pray, think, talk, and then make your decision and don't look back.

jezza

I have sent you a private message. Go to My Home at the top of the page to retrieve it.

I have sent you an Aussie link where the oncotype test is discussed (very expensive and no rebate in Aust. apparently..has to be sent to the US) and also a discussion about whether to have chemo or not.

Pick the brains of your medical team ..they have all your info. I was in a similar situation to you..hard when you hae differing opinions!

Hugs

jezza

Katalin

For what it's worth, I don't understand why they MUST know next week.  You shouldn't feel so pressured...take your time and lessen the stress and look at your options.  Lots of good feedback here!  Good luck!

idaho

Hi HY!  I am 47 and have almost the exact same stats as you.  I chose not to do chemo, it only upped my chance of no recurrance by 2%.  I did do radiation and am planning to have my ovaries out and a hysterectomy.  I will also take tamoxifen.  Good luck making your decision.  I couldn't take the oncotype because I could not afford it.  Soft hugs- Tami

Jamie6

My oncologist was pro-chemo for me, as I'm also 42 year old.  Then my oncotype test result came back and she told me that I would ahve no benefit from doing chemo, so to skip it.  I was stunned by the sudden turn-aroud in my doctor's recommendation.  Was quite relieved, actually.

One would think Oncotype DX is commonly available world-wide by now.  What's up with that?

anondenet

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You do not have to decide next week. That is completely arbitrary for your doctor to tell you that. This is a big step. Take your time and weigh your concerns.

They are overtreating people like crazy.

scarp

From the date of my surgery 8/8/08...I did not start chemo until 10/28/08.  Obviously it took me a while to decide but I did do CMF chemo and happy that I did.  Look to that thread under "Help me get thru treatment"

HY66

Hi Jezza, I saw that you have been in remission for 17 Years! Congratulations! Can you share if you have made some lifestyle or dietary changes during this time?

HY66

After much deliberation and talking with family and friends, I finally decided this past weekend to do the chemo - it'll be starting next Thursday and will be FEC x 6.  I'm praying and hoping for minimal sideeffects from the 18 weeks.

My major reasons for doing so were:

According to Adjuvant Online, my Recurrence-Free survival is significantly better with chemo + tamoxifen than tamox alone, and the RFS benefit is highly important to me.

Having said that I also want to take every percentage of survival that I can get so I can be around to see my kids grow up.

My bone scan showed a spot on my rib that they radiologist said COULD be suspicious. My onco said not to worry about it, and that it would difficult to biopsy that spot right now, so I hope the chemo will clear up that spot if it is indeed cancerous

At the end of my consultation with him, my onco said that the majority of women my age (or younger) would do chemo as they have more of their life ahead of them and a higher risk of recurrence and/or dying from cancer than from other diseases e.g. diabetes, heart problems.

I'm continuing to make diet and lifestyle changes as well - which I hope will increase my chances of staying in the positive ranks of the statistics.

So that's my decision - thanks for all your views and advice,

HY

lexislove

I'm glad you made your decision!  I think you made a wise choice & good luck on your treatment.