Diagnosed but scared

sweke · June 2013

Hi

I was diagnosed with IDC stage 1/grade 1/ no lymph nodes involved/slow growing/ER+/HER2-. I had a bilateral mastectomy. I am 43. My oncologist got the results of my oncotype test back and I was intermediate-26. High is considered above 31 and chemo is recommended. So I am in the middle and therefore due to my age and test score he has recommended chemo. According to onoctype, with just hormone therapy the chances of it NOT recurring in 5 years is 83%. If I do chemo and hormone therapy the chances of it NOT recurring are 94%.

I know this should be good news but I can't stop thinking about the 6%. And I want to live more than 5 years-10 years-20 years!! How does anyone deal with this type of mental attitude?

flannelette · June 2013

I don't know the right answer, of course, but of the 2, the hormone therapy is the bigger hassle as it goes on & on for 5 years and of surgery, rads & chemo has certainly impacted me the most with ses. And might go on for another 5 years. whereas the chemo is not fun but doable, and is over in maybe 3 months. and might give you peace of mind that you've done everything you could. I like knowing that it was on a search & destroy mission in all the wee corners where some hooligans might be hiding.

edwards750 · June 2013

I dont know the "right" answer because that can only come from you...it is your life and your decision. Doctors provide us with the percentages and odds and we make the call from that information. I had Rads, not chemo and am currently taking tamoxifen. I am 2 1/2 years from my DX. My oncotype score was 11; I am Stage 2, Grade 1 IDC. I had a micromet in the SN which prompted the Oncotype test. My ONC was ambivalent about chemo vs Rads. I gotta admit of course I didnt want to do the chemo but I think in retrospect if my score had been higher and my ONC recommended chemo I certainly would have done it. I am the kind of person that would always be looking back at what if...if I decided not to do it. From the posts I have read more women complain about the SEs of Tamoxifen and Arimidex than they do chemo. Whatever you decide good luck and dont second guess yourself. diane

Pessa · June 2013

I am very similar to you, though was 58 when diagnosed 3 years ago. Stage 1 (no nodes+), grade 1 ICD, ER +, PR- HER-, oncotype score of 28. I had a bilat MX, did not need rads but did opt for chemo. It was quite doable. Am on Arimidex, 2 years so far. I wanted to do everything possible to prevent a recurrance and knew that I would be upset if I had skipped chemo and had it return. I have a 91% chance of no mets/recurrance. It's the best that I could get. I think the chemo added only about a 4% decrease is recurrance rate, but for me it was worth it.

farmerlucy · June 2013

Sweke - It is such an impossible task to get those numbers out of your head. I know I ran them over and over and over. I think most of us do. My counselor told me over and over that I was not a number. This is all so new to you. It does get easier over time. If things get too tough don't be afraid to ask for meds. I took a low dose of anti anxiety meds for a year. I am now on 37.5 mg of Effexor which makes me sleep like a baby, chases the ghouls away, and helps with hot flashes.

Right now you can't imagine not thinking about BC all day every day, but it will happen. It just takes time. My counselor had me think of a daily "saying" when I was having such a hard time. Here are some I remember "Keep on keepin on." "Today's gonna be a good, good day!" "Am I going to die today?? NO! Then live today!"

I looked for answers everywhere, but they were nowhere to be found. Be gentle with yourself. Physical and emotional recovery takes time. A wise doctor told me it may take a year or even two years to accept my dx. He was right. I am 15 mos out now. Things are so much better. They will be for you too. Oh, and the other thing my counselor would tell me- "You know how long it will take for you to feel better? As long as it takes. " Hugs to you my sister.

sweke · June 2013

Thanks everyone! I have never second-guessed the chemo. Just wasn't prepared to hear it. What really throws me is that I had the "second best" type of cancer; with stage 0 being the best. And my oncotype came back intermediate but on the high side at 26. Just doesn't make sense to me since I was told that the cells were slow-growing and it wasn't in my lymph nodes. I will think of chemo as a precaution, but even with the 94% shot of it not recurring, I feel terrified of the future.

src3acs · June 2013

Hi Sweke, I was diagnosed with the same IDC, stage 1, grade 1, no lymph node involvement. My Onco came back at 18.....low end of intermediate. However, I wasn't really given a choice about chemo. I had a lung resection done due to a lung nodule the day before my BMX and DIEP in October 2012. I had complications from that and my MO said I was to sick to risk any side effects from chemo.....in others words she felt the chemo would make me very ill. I had fluid on my lungs and my breathing was still labored. So the 4 rounds of chemo she was going to recommend went right out the window. To be honest.....I worried for a short while and now I don't really think about it. I do take Tamoxifen and have had all of my reconstruction surgeries (DIEP, Lift, Fat Grafting). I go to my follow-ups, continue to get my lab work done. If by chance I would have a recurrence.....I will not blame it on the fact I wasn't able to have chemo. I am 47 and my first grandbaby was born 3 months ago. I also hope to live much longer than another 5-10-20 years. Stay strong....and I wish you well ......Sharon

auntienance · June 2013

Sweke, my stats are the same as yours, including oncotype score. I asked my mo about why such a high score for such a low grade tumor. He stated that he thought the test saw something the human eye could not. I opted for chemo and have no regrets, but my score surprised us all, including my mo.

msphil · June 2013

dear sweetie, I too had idc, but stage 2,3 nodes,L mast, chemo and rads and 5 yrs on Tamoxifen for hormones and (Praise GOD) I am a 19 yr SURVIVOR this yr. msphil

sweke · June 2013

Thank you! I am hearing more and more stories of women who are 8-10 years past diagnosis and it's giving me hope. I so appreciate you took the time to reply.

puppymama09 · June 2013

Sweke, our dx are pretty similiar and I also am 43 years old. I know what you mean, it seems like they give you these stats and they sound good, 95% for 5 years, then you stop and think wait a minute 5, 10 years?, I wanna live a lot longer than that. Scary, I don't quite understand how the stats work. It seems like once you have this desease you are targeted for life. My dr. didn't even do an oncotype test he just said due to my age I should have chemo, I am fine with that, I want to be sure to get rid of everything that might be lingering somewhere else.

I also love to hear the stories of people living for many, many years it is very encouraging! Do you know when you will be starting chemo? I should be starting around middle of July. Keep us posted.

firestorm531 · June 2013

This is one crazy roller coaster ride; so many numbers, so many decisions and an insane number of variables!

It's a wonder we don't lose our hair before getting chemo! LOL

I was 41 at my diagnosis and although I'm done with treatment (chemo/rads), I still turn the numbers over and over in my mind...I'm 'only' 42, call me selfish, but I want (at least!) another 30 years!

sweke · June 2013

Hi Firestorm. I hate us having to be in this spot but always gald to find someone similar. I started my first chemo today. So far not bad. Taking Cytoxan and Taxol as well. I have friends who are oncologists and asked them why the threshold for these survival studes end at 10 years? Do we just drop dead on the 10th anniversary of the diagnosis? Their responses were that after 10 years you are considered just as at risk as someone who has never been diagnosed. And it would be too expensive to pursue survivors who are past 10 years. But I am still a bit freaked out!

momand2kids · June 2013

Hi

almost 5 years out-- lumpectomy, chemo (onco of 26 or 27) radiation--- was on femara and lupron--now just femara, which I hope to go off of in the next year.....

So, your question about how do you mentally grapple with this? The 94% is the important number. When I was dx, my h asked the oncologist what my recurrence rate would be without chemo, it was calculated at 15%. His response was, "that means there is an 85% chance of no recurrence?".... I of course, was focused on the 15%..... but once we focused on the chemo (bumped it up to 91 or 92%) things got better. I have a better chance now (as do you) of getting hit by a car or some other thing....

So, it is a little re-framing, but it is early for that right now. You will think like this for a while--I highly recommend not trying to fight it.... just go with it. Then you will find, as you go through, that you are thinking about it less and less, and that you will appreciate that 94% and the surveillance post treatment. chemo is always a shock.. but once you wrap your mind around it, you will put your head down and do what you have to do.

For what it is worth, I worked during chemo, have 2 kids (they were 12 and 7 at the time). I honestly found the daily grind of radiation much more challenging....as my onc said at the time "chemo is not pleasant, but you can do it".

Best of luck

sweke · June 2013

Hi momand2kids

Thanks so much for your post. I'm barely a month out of diagnosis and already had the first treatment. My mind is an enemy as well at this point.

I still get so depressed and keep thinking about the what if's...are my lymph nodes swollen? Could the PET scan have missed anything?, etc. My kids are 9 and 7. The 6% I know is just a number but it's a pretty important number. My husband tells me I will be fine...look at all the others people out there who are just laying around, not eating right, whatever. I tell him that I already have a condition so that makes it hit home so much stronger for me. Next issue is that I am scared of food right now. Don't want to eat anything that could make the cancer come back. I was 115 and am down to 104....so any suggestions on food would be appreciated!

Patti777 · July 2013

Do not know if this helps. I am in early stages of my journey but do not let this control your life. There are always so many what ifs in our lifes. Most never come to be. Enjoy your kids and family. Our attitude is the biggest part of this fight. If we feel defeated then we are. Eat healthy and exercise.That is the biggest way of helping it to never come back. Laugh a lot. And know you are never alone. My grandfather had a stroke when I was a young girl. He decided he was done and gave up.He decided he was going to die. He did die 25 yrs later. What a waste of precious time. We are all here for you.

Power-House · July 2013

Thank you so very much Patti 777. That is exactly what I needed to hear right now. I am going to get up, make a schedule for my day starting with going to the gym! I am normally doing great! We had a packed weekend from shows to spas... even the water park! BTW, it feels great to scream really loud! lol. But waiting for the results of the Onco Dx test to determine if" to chemo" or not is starting to take a toll. 2 more weeks to wait.yesterday was really really hard. I just couldn't stop crying and felt like sleeping all day. Today will be better!! I wish all of you who read this an amazing day filled with productivity, steps towards healing, and filled with warmth and love. That is my wish to all of you! </p>

Patti777 · July 2013

Please keep me posted on your tests. Either way it turns out you will be fine. Just keep fighting and stay busy.

Diagnosed but scared

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