Oncotype/Chemotherapy

crusader1 · December 2008

Hi,

Just went to see my breast surgeon prior to my mastectomy and she told me the results of my Onco test which the oncologist had given. My numbers were 27. This is borderline as to whether one undergoes chemo or not. Anyone out there had a similar experience. I had clean lymph nodes after my unsuccessful lumpectomy. My tumor was 1.2 cm in size.

Thks once again. It seems that everytime I go to the doctor a new issue is brought up.

mawhinney · December 2008

My Oncotype Dx score was 30. One area was a little smaller than yours at .8cm. & a 2nd area in the same breast that was .2cm. I had a mastectomy. I was rated Stage 1b as the .8cm cancer had just begun to break the margin. Until we rec'd the Onco score everyone said I was in the very low risk group so the high score of 30 shocked me. At first my gut feeling was to have the chemo since I was just about in the high risk group. Then my husband, an engineer, figured out that in my case going with the chemo only gave me 3% better odds. We then decided the chemo treatment wasn't worth the slight improvement & the side effect risks. My oncologist said he was fine with our decision. I take Arimidex daily and hope I made the right decision.

otter · December 2008

crusader1, a score of 27 isn't necessarily "borderline".

The Oncotype scores are generally grouped into 3 categories. Scores from 1 to 17 are considered "low risk" for distant recurrence in the next 10 years; scores from 18 to 30 are "intermediate risk"; and scores above 30 are "high risk". "Distant recurrence" in 10 years refers to the risk that metastatic BC will develop in the 10 years following surgery.

So, your score places you in the upper third of the intermediate-risk range. I had a similar experience: my score was 26, which corresponded to a 17% likelihood that I would develop metastatic BC in the next 10 years. I decided that risk was too great, so I took the advice of the two oncos I talked to and went through 4 rounds of Taxotere & Cytoxan. There were some other characteristics of my tumor that made mine a higher risk than usual (besides the Oncotype score). Your situation might be different.

Your Oncotype results, and the likelihood that you will need or benefit from chemo, is best discussed with your oncologist rather than your breast surgeon. Just IMHO; but that's the medical oncologist's role in all of this.

otter

crusader1 · December 2008

Otter,

Thks for your reply. I know the Breast Surgeon does not have a role in this. Unfortunately on my preop visit for my mastectomy she gave me the results that the Oncologist had just forwarded to her. She gave me no advice but to weigh the odds and to get another oncological opinion. I am just upset because I did not think I would have these results until the end of January. As has been in my case each time I go to see the surgeon the story gets another ending.

Harley44 · December 2008

crusader 1,

I had a score of 28, and I thought it was WAY TOO HIGH, so I went ahead with chemo. I had a similar tx to otters, I had 4 tx of Taxotere & Cytoxan.

My pathology was also similar to otter's... .8cm, stage 1, grade 2, 0/16 nodes, ER+/PR+, HER2-.

My onc didn't care whether I got chemo or not. But my surgeon felt that it was VERY IMPORTANT for me to get chemo.

How old are you? I was 44 at the time, and my surgeon said that the younger you are, the more time you have to live, and the more time you live, the more time you have to have a recurrence. It made perfect sense to me.

Otter is right, it IS the onc's job to decide whether it will be beneficial for us to get chemo or not. But, in my experience, the oncs are NO HELP at all.

It is YOUR body, and YOUR decision. Good luck, dear, with your decision. Sending BIG HUGS your way!!

Harley

crusader1 · December 2008

Hi Harley,

Thanks for your reply .

I am 61 years old. How long ago did you have the chemo and the test. How are you feeling now?BTW how was the chemo?

My husband and I will definitely get a number of opinions before we make this decision. It is real hard as I am now trying to get prepared for my mastectomy on January5 and the reconstruction that will immediately follow with expanders.

I really thank you and all the other women on this board for taking the time and reaching out to answer my questions in this time of need.

Francine

EleanorJ · December 2008

Hi Francine, I agree that 28 is fairly high. TC (taxotere & cytoxan) is an aggressive treatment yet easier on your body. You're too young to be worrying about breast cancer coming. You have time to get another opinion before surgery, and you might even find out more information after the final path report is in. Until then, I hope you're able to enjoy the holidays & have a great Christmas

Tamara67646 · December 2008

I had an oncotype score of 25 and elected chemo - my onco was also very clear that at age 45, I needed to have chemo. I agree with Otter - I had a 16% chance of re-occurance and that number was too high for me. I had 6 tx of TAC and while I would not want to have to do it again - all the SE were manageable. I finished my chemo on 10/31/08 and am doing well as I go through radiation (I had a lumpectomy so rads is part of my tx plan).

Good luck with your decision

Tamara

Harley44 · December 2008

Francine,

I am sorry that I didn't give you further information about the chemo. For me, it went fairly smoothly, but everyone is different. I know I was TERRIFIED! I am the biggest chicken, and if I got through chemo alright, then so can YOU!!!

My MIL will be 80 in March, and she told me that IF she ever gets bc, she will opt out of chemo, but I tell her that at her age, NO onc will recommend chemo. It is different for us younger gals. Wink

Good Luck with your decision! Hope your Holidays are Happy! Try to relax and try not to think about your tx decision, while you are enjoying the Holidays!!

Hugs

Harley

Springtime · December 2008

Questions: <<Crusader, I hope you don't mind...>>

My tumor was 5+CM (ER+ PR+ Her-) according to MRI and I wasn't even offered the Oncotype test, at ALL... I was told I would get chemo, period (prior to any surgery). I wonder now ... what my score would have been, because they are saying I may not have had a good response to the chemo.

Does the Oncotype test give any indication on how effective chemo will be? Or is it just the likelihood of a distant recurrance w'in 10 years?

ladurbi · December 2008

Dx JAN06, 52 yrs old, Stg 2, IDC 1.8 cm, ER/PR +, Unilat mast w/imm recon (IGAP), SN -, 5 taken.

Oncotype score 25, Elected no chemo w/Oncs support. On tamox.

Will be 3 yrs nxt mo.

Harley44 · December 2008

Springtime:

I believe that the Oncotype test is for ER+ gals, who's bc was less than 1 cm, so if yours was 5CM+, then I would think that chemo would be a certainty.

I hope this helps you somewhat.

Harley

Springtime · December 2008

I see, so the size initially matters. Gotcha.

dlb823 · December 2008

Francine ~ Just wanted to lend my support to you and to what the others have already said. I also wanted to say that when you are first dx'd, it can be overwhelming, and chemo seems like the worst fate in the world to have to face. But try not to worry ahead. Do your research, talk to those who have been through it (as you are here), and even be prepared for your thoughts to swing from one extreme to the other as you decide what to do. You will have plenty of time when you are recouperating from your surgery to decide about chemo, so try to focus on getting that surgery behind you, as hard as it is to stay focused on just one thing right now.

And about chemo... Like you, I was absolutely terrified of it and spent hours searching the internet for reasons not to do it. But, the more I researched my dx and listened to survivor-friends, the more I realized how many women had done it and gotten through it just fine. Plus, there is at least one very new regimen (the one Otter mentioned that I was also on) that is very do-able -- especially with the help & support of other women on these boards going through it at the same time. So, try not to let your thought process get overwhelmed with too much information and too many decisions at once, and try not to be overly afraid of chemo if your mind and heart lead you in that direction. Best to you, and please keep us posted ~ Deanna

crusader1 · December 2008

Ladies,

Thks so much for all your advice. This board is a really great resource. My husband and I will continue to investigate our choices. It is good to hear that there are less aggressive forms of chemo. Yes I must first get thru the surgery and recouperate. I am optimistic about that.

Yes Springtime this test is for women with early stage breast cancer who have no lymph node involvement and small tumors.

Thks Deanna ,Harley and others for your time and well thought out advice .

Have a great holiday all..

Francine

holtbolt · January 2009

Hi Crusader.... yes, I am in that gray area as well and I feel your pain... I had an onco score of 22. It's a tough call for sure and I've been thinking about it nonstop... do it.. don't do it.... back and forth....but today I've decided to do it for added insurance (an additional benefit I'm told of 3-5%). That may sound low but I'm afraid I have the personality to second guess myself forever if I DON'T do it.... even if I'm doing it for no reason.... in the end... it will help me move on.... good luck with whatever decision you make... it's a personal one... and whatever it is... be at peace with it.

Otter, Harley.... I'm just about to start 4x TC... how was it??? Tell me it was easier than you expected... lol.... no, ok, just tell me the truth.... Laughing

auriga · January 2009

I start 4xTC Monday. Tell me the truth too. The real truth. Please. Embarassed

hopefullady · January 2009

Holtbold and auriga,

I'm sure the others will chime in soon, but here is my real truth for what it's worth. I finished four treatments of TC in November. I am really glad it's over, but if there was a need to do it again I probably would.

It was not as bad as I thought it would be. Of course, everyone does not have the same side effects. Some more, some very little at all. I will hope for you that you have very few.

Read the threads for a particular month and especially the one about Taxotere and Cytoxan only. There is some great information and some really helpful ladies on those. Keep in mind while you are reading posts that those who are not having side effects rarely post. So, you may be hearing the worst and not the best.

For myself, the infusion itself went smoothly and was really no big deal. Not the horror I had made it in my mind ahead of time. That day and the day after I felt pretty good. I kept it to small frequent bland meals for the first week. I had no problem with nausea. By the 3rd day, I kind of felt like a truck ran me over. Just really exhausted and had to force myself to move around. About that time my taste buds went crazy also and nothing tasted like it was supposed to. That lasted for several days. Things gradually got better until it was time to do it all again! )

Keep in mind that they have really good drugs for nausea now and that for every side effect that you come up with, they can pretty much prescribe something. Don't be afraid to tell your doc what you are feeling. They want you to do well. I had to get used to taking a LOT more drugs than I ever have before, but it's only temporary. Really, you can do this.

Holtbolt, just like you, I have that second guessing type personality. The decision to have chemo, once I finally made it, gave me much peace of mind. Whether or not I really needed it. I had a lumpectomy, mammosite radiation, oncotype score of 20, and will be on tamoxifen for five years.

You will be done with four treatments before you know it.

Chris

Harley44 · January 2009

holtbolt,

Hi. I finished my tx on Oct 9 2007. It really wasn't all that bad. As Chris said, they have some really good drugs to help with the se's of the chemo, especially the nausea. I didn't have any problems with nausea. Halfway through, I had problems with fatigue, but since the effects are cumulative, that is to be expected.

Everyone has different se's, so your experience may be different. Remember to pamper yourself, and make sure you get rest when you need it. Also, remember to drink LOTS of water and juices, to help flush the chemicals out of your system, for the first few days after your tx. It is important to keep drinking water!

The initial fears about chemo were worse than the reality for me. I am glad that it's over, but if I had to do it all over again, I'd do it.

When do you start your tx? There is a thread about Taxotere & Cytoxan, and it has lots of helpful advice there. It's under Chemotherapy... I didn't find any of these threads until I was almost through my tx.

Good Luck! Please keep me posted on your progress.

Hugs

Harley

auriga · January 2009

Thank you both for the assurances. You do make it sound as if it is not the worst thing that will ever happen to you. That is what I am imagining. I even have nightmares about it.

I have been reading the thread on Taxotere and Cytoxan or trying to. It is so long and I only get a chance to read a few pages at a time. Those women are so helpful.

I'm sure this whole thing will be nothing to what I am expecting. At least I hope so.

Thanks again for the info.

Harley44 · January 2009

Auriga,

Before I started my tx, I kept reading where other women were posting, saying that chemo is definitely Do-Able. I thought WTH? But it was true. No, it isn't something that I ever would WANT to do, but it really wasn't all that bad.

Since I "only" had 4 tx of Taxotere & Cytoxan, I didn't get a port, but by the end of my tx, my veins were about shot, and since we can only use one arm, because of the risk of lymphadema, they had trouble getting the IV in that last tx...

I am the BIGGEST chicken, and if I could get through tx, then so can you.

Please post often and let me know how you are doing, k?

Good Luck holtbolt and Auriga!

HUGS
Harley

auriga · January 2009

Thanks Harley. You're really convincing me maybe it won't be so bad after all. I will definitely let you know how it goes.

Harley44 · January 2009

Auriga,

I hope your tx goes well for you. My experience was that it really was not as bad as my anticipation of it... I was petrified! We met some friends after my bc dx, but before my bilateral mast., and subsequent onc appt. to set up chemo., and our friend Dave said to me, "you are petrified, aren't you?" That was EXACTLY how I felt!! But the tx itself, in actuality, wasn't nearly as bad as I had anticipated.

Hope you will find your experience to be the same. I hope to help you in any way possible. One piece of advice that I would like to give you before you begin your tx:

Ask for Neulasta shots, the day after your tx. They help to boost your wbc, so you won't be in as much danger of catching something, because of your lowered immune system. When you get the Neulasta shot, be sure to take a Claritin (regular Claritin, NOT Claritin D) for three days AFTER you get the Neulasta shot. It will help to prevent any lover back or bone pain you may get from the Neulasta. I didn't believe it, but my chemo nurse told me to take Claritin, and I didn't have any problems with the bone pain. My onc also mentioned it when I went for my followup. He asked me if I had taken the Claritin, and I said YES. So it works, but I don't know why.

Sending HUGS your way!!
Harley

auriga · January 2009

Thanks Harley. I had previously read on these boards to take the Claritin. I just didn't know how long to do it. I was planning on doing it for only 1 day afterwards. I am so glad you cleared that up for me.

I took the "shopping list for chemo" with me and went to town at my local CVS yesterday. I even bought a basket to put everything in and set it all up in my bathroom. I'm either very organized or scared out of my wits. I vote for scared.

I'm sure it won't be as bad as I anticipate. Then I will feel like a complete fool. In the meantime, I'm just staying busy today trying to keep my mind off it. It's not working.

Thanks again.

hopefullady · January 2009

Auriga, I will be thinking of you tomorrow. I'm sure you'll do fine.

Holtbolt, when is your first treatment?

Chris

auriga · January 2009

I survived my first chemo! One down, three more to go! It was not bad at all. Just ended up being a very long day. The nurse said I might get nauseous last night, but it never happened. So far today, I feel great. I hope this keeps up

The other good news is she said I will not need a Neulasta shot because I have treatments every 3 weeks, so your bone marrow has a chance to build up in that amount of time. I am so glad. I was a little hesitant about that shot as I read about the SE's.

I'm still dreading the day my hair falls out. That will be traumatic I thnk. But hey, I can deal. I've dealt with everything else so far.

Thanks for all the encouragement ladies.

Harley44 · January 2009

Auriga,

I am so glad to hear from you!!, and I'm glad that your 1st tx went well!

The fatigue is cumulative, so I didn't feel very tired til I was over 1/2 way finished. Pamper yourself, and rest when you need it.

I got my tx 3 weeks apart, too, but my wbc still plummeted the week after tx. The thing about having a low wbc is that if you go out in public, you can pick up infections very easily, and it is very important to protect yourself. Make sure to wash your hands obsessively, to make sure you don't pick up germs and bacteria from other people and anywhere. I found that it was better protection for me, to get the Neulasta shot the day after. After my 1st tx, I went back 9 days later, and my wbc was VERY LOW! They made me take antibiotics for 5 days and they gave me Neupogen shots for 4 days. I had to give them to myself, after the nurse showed me how to do the 1st one. Let me tell you, the Neupogen shots were WAY worse than the Neulasta. JMHO

I went to see my surgeon one week after my 1st tx. He didn't know that I had decided to get chemo, and he had been feverishly trying to convince me to do it. His office is always so overcrowded, I was terrified I would get sick, and that is the day that I started feeling sick from the chemo... no nausea, but I just felt like I was getting the flu, I had a headache, and felt feverish. Be careful to watch for the signs that your wbc is getting low... chills, fever, achey, flu like se's.

The hair... oh, I NEVER got used to not having hair. To me, it was worse than losing my breasts. But everyone is different.

This is such good news! Please keep us posted.

Hugs

Harley

marlenet · January 2009

harley44

wow sounds like i have the same treatments as you. Reading you info made me feel better. I start the 13th Jan. every 3 weeks. 4 treatments ,same drugs as you. I was told the dose will be mild as i had early stage cancer. How did you feel in between treatments? thank you all for your stories.

Harley44 · January 2009

mar66

I had 4 tx of Taxotere & Cytoxan, 3 weeks apart. I did well, and only felt flu-like se's the week after my tx, when the wbc is typically low. I feel that the Neulasta shots protected me from having some kind of infection from having low wbc.

In between tx, I really felt ok. After the 2nd tx, I started feeling the fatigue, and it IS cumulative, so especially after my 3rd and 4th tx, I was very tired.

Just take care of yourself, and rest when you need it. Oh, and remember for the first few days after your tx, drink LOTS of water, to flush those chemo chemicals out of your system!!

Also, if you get the Neulasta shots, remember to take a Claritin, every day for 4 days, to help relieve the lower back/bone pain. It helped me tremendously!

Good Luck! Please keep me posted, and let me know how you are doing, ok?

HUGS
Harley

auriga · January 2009

Hi Harley,

I'm still doing great over here. My face is just a little flushed from the steroids I assume. But, other than that, I'm doing fine. The nurse did say they will check my wbc when I go back for my second tx. If it is low then, they may consider doing the Neulasta shot. I certainly hope not. That sounds worse than then chemo I think.

I also had someone else mention to me that they started feeling bad the week after, not the week of. Maybe that will happen to me too. Or maybe I will breeze right through this with. Wouldn't that be funny after how terrified I was? Ha.

Harley44 · January 2009

Auriga,

I think it would be WONDERFUL if you breezed right through chemo!! I didn't have too much trouble with my tx, but I did have the low wbc after my 1st tx, and I had to get Neupogen shots, and take antibiotics (Levaquin, I think), so after that, I decided that I didn't want to go through that again, and risk getting an infection, so I got the Neulasta shots. They really weren't too bad, when I took the Claritin to counter act the se's. But, you may not have any trouble at all. I hope you breeze right through!!

HUGS
Harley

Oncotype/Chemotherapy

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