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Onco-type DX Test
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samrenfro posted:
This is my very first post. I was diagnosed with Stage II hormone positive 1.7 cm invasive lobular carcinoma on December 20th after discovering a lump in November. This did not show up on a mammogram or ultra sound or needle aspiration. However, after seeing the lump (it was visible next to my nipple) my GYN sent me to a surgical oncologist who did all these tests including a surgical biopsy. Since the biopsy didn't show clean margins, these tests were followed by an MRI and ultra sound to look at my lymph nodes. I had a brest conserving mastectomy and breast reduction on the other breast on February 9th. The Dr. called me a week later to let me know that there was no sign of cancer in the lymph nodes or in the breast after surgery. All along I have gotten conflcting messages from various drs. and health care professionals. I was told that my treatment after surgery would be radiation and arimimdex. Then I got a call from a lab saying that my tumor was sent to have a onco-type DX test to see if I needed Chemo. No one had ever said I needed chemo. My dr. said that this was just rountine and apolgized for the lab calling me. Has anyone else had this experience.. I get my results next week, but I am nervous that there is more the matter with me than what they are telling me. I've seen the path report after the biopsy, but not after surgery. I'm 69 year old.
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judyfams responded:
The Oncotype test is a test done to analyze your tumor's DNA to determine the % chance of recurrence of your cancer over the next 10 years and whether or not chemo would be beneficial for you.

This is an expensive test and not all insurance companies pay for it - but Medicare does and that is why Medicare patients usually have this test done. I know since I was 67 when I was diagnosed last year and wanted the test and was told that Medicare does pay for it.

I think it is an excellent test and all insurance companies should pay for it. You still have options after you get the test results. If your results indicate that you would benefit from chemo - you can still opt not to do chemo. This is your body and only you can decide what treatment path you want to take. This test will just give you more information to help you make your treatment choices.

The only mistake was that the lab called you instead of your doctor explaining it to you.

If I were you, I would not worry about the fact that the Onco test was done on your tumor. When you get the results you should discuss all your options with your doctor, and make your decision based on what works for you and only you - not what your friend or sister did. You have to be comfortable with your treatment decision.

It takes about 2 weeks to get the results of the test. Much good luck to you.

Judy
 
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samrenfro replied to judyfams's response:
Thanks for your reply. Did the test help you make a decision on whether you needed chemo or not? I did do research after I heard about the test and saw that the test predicts by using a scale of 1-100 how likely your cancer is to recur and how likely chemo is going to help. And, it is done on hormone positive lymph node negative patients who are stage 1 or 2. The waiting for the results of all these tests is almost the worst part of the breast cancer. You have reassured me that this test is becoming routine for those who have insurance.
 
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judyfams replied to samrenfro's response:
My Onco score was 20 - in the low intermediate range. Numbers 1-18 indicate that chemo is not necessary and numbers 31-100 indicate that chemo would indeed be beneficial.

Numbers 19-30 do not yet have statistics to indicate whether or not chemo would be beneficial. There are clinical trials being done since 2006 on the benefit (or not) of doing chemo for those in the intermediate range.

My surgeon said I should not do chemo and my family doctor thought I should. My % chance of recurrence was 12% over 10 years which is reduced in half by taking an antiestrogen drug - which would bring me down to about 6% and if I did chemo that % might be reduced by another 1%. So I had to make the decision on my own.

My oncologist said he would support me with whatever decision I made. I did not ask my adult marrried children (I am divorced, parents no longer alive) to help me make the decision as I did not want them to tell me to go for chemo and if I had bad sude effects from it - they would feel guilty, and if they said no chemo and the cancer came back they would also feel guilty - so I made the decisiion totally on my own and just informed them of my final decision.

I opted to go for chemo because FOR ME - if I did not do the chemo and the cancer came back I would have always questioned myself and had regrets. Also if breast cancer has a distant recurrence it usually shows up in the bones, brain, liver or lungs and I did not want to take that risk with those organs. So I had 6 rounds of cytoxan/taxotere. It was not a problem for me and I feel that I have done everything I could and if the cancer comes back - then it was meant to happen.

I made the right decision for me - it may not be the right decision for you or other women - but I was comfortable with that decision and have absolutely no regrets. I handled the chemo well by eating many small meals of lean protein, and eating lots of fruits and vegetables and drinking a lot of water. I took time to rest and made sure to always eat during the day.

The important thing is that MY DECISION WORKED FOR ME AND GAVE ME PEACE OF MIND. Your decision whatever it is should bring you peace of mind - if it does that then you know you have indeed made the right decision for you.

I would only suggest that when it comes to radiation, please check to see if you can have it done in the prone (face down) position. Some radiation oncologists do not mention this , but you and every other lady should ask - because if your breasts are large enough to hang down and you tumor is not located near the chest wall you might be a candidate. If radiation is done in the prone position your ribs, lungs and heart are afforded the maximum protection they can possibly have. Most women do not even know to ask about being irradiated in the prone position.

Much good luck to you and let us know what your onco score is.

Judy
 
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LADYPAR72 responded:
had loblar cancer also stage ib, had many troubles with surgeries even tho i had 10mm lump.thank god for mamo.s as i never nor doc,s could feel lump, had a needle biopsy of rt breast ok before surgery had already had surgical surgery on affected
left breast showed the cancer soi went to a
cancer center and had margins done showed microscopic on 1 node . this was is 2010 if today they would take the one node but i was a year to late so had sentenial nodes removal. was told i didnt need chemo
. i chose a onocologist close to haome to get radiation and hpormone pill for 5 yrs. im 71 . went to local and he said chemo lite. now the decision was mine, i decided to go with cancer center and no chemo . i wont regret it at my age i didnt want to go thro it and it,s not like im 50 , then i may have, but since i had cellutitis twice and injections for antibiotics and then thyro that got a bacterial blood infection and blood clot, had to take cuimadin 4 months .
i was not in good shape on hosp 4 times so i was not in condition for chemo , radiation for me was tough but got thro it . the ratio of survival was not enough percentage.
i,ll take
my chances and if it comes back i will never say i should have. that was my choice and we all have that at lease. had my 6mo mamo and was fine and a bone scan do to some shoulder problems and no cancer. turned out i had polymyalgia another painful thing to get through but im tough old cookie.
good luck on your decision,
 
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samrenfro replied to LADYPAR72's response:
Thanks for the helpful information. I will let you know what my onco score is and what I decide on Friday.

It's so nice to know that others understand what I am going through.
 
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ReelinDealin replied to samrenfro's response:
You sound like me agonizing over your decision. Listen to what Judy says...she puts it so well. I had to weigh lots of factors and more came up "pro" chemo therapy than "con". I start tomorrow and my decision was sooo hard. Nobody wants chemo...yuck! I hope and pray my side effects will be minimal. I also cut my hair short which I'd worn long for years and years...and it's kinda cute. I didn't want to shear it all off...but it's ear length now and will be less to clog up the drains and vacuum cleaner. Best wishes on your test results (mine was 32) and keep on posting when you decide what to do about chemo.
 
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samrenfro replied to ReelinDealin's response:
Thanks for sharing your decision. Good luck to you with the start of your chemo treatments. Let us know how the chemo is for you. You may have already posted this information, but what kind of breast cancer do you have? Have you bought a wig yet? I had a friend who gave me one. I tried it on and it felt really weird.
 
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rachael67 replied to samrenfro's response:
Sam, regarding head wear/wigs/scarves when going through treatment, please scan through our "Tips" found on the right side of this board. There are quite a few posts concering help with most everything one would need while on this journey including head gear. In fact, as I recall I believe it is the TLC of the American Cancer Society which gives one free wig.

Please check the suggestions. Should they not be helpful, please repost as I know this community will offer their own experiences.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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samrenfro replied to rachael67's response:
I will not need a wig! I met with my doctor yesterday and found out that my onco score was 11! That means that my cancer is not particularly aggressive and I won't need chemo. I was ready for whatever, but was relieved that I won't have to do that. Before they had the onco test, I would have been a candidate for chemo because of the type and size of my cancer. I meet with the radiation oncologist next week and will start radiation in a few weeks. After that it will be arimidex. I have seen that several of you have had problems with that drug. I will have a base line bone density test soon to keep track of an bone loss through treatment. It doesn't seem fair that one of the side effects is weight gain - haven't we been through enough. I am grateful to all of you who replied to my post. Sometimes this can feel like a very lonely journey even though you are surrounded by people. However, most just don't understand - not their fault - they just haven't been through what we have.
 
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judyfams replied to samrenfro's response:
Congratulations!

When you meet with your radiation oncologist ask him if you are a candidate to have radiation in the prone (face down) position. In this position, the armpit, chest, lungs, ribs and heart are not irradiated as the radiation comes from the right and left side - not from above. Candidates usually have early stage breast cancer, no positive nodes and need to have a breast that can hang down on the table. I had mine done in that position and had no problem lying on that position as it only takes a few minutes for each session.

Also I am starting Toremifene which is an antiestrogen drug similar to Tamoxifen but with fewer side effects than Tamoxifen. My oncologist also wanted me to take Arimidex, but I told him that I would not take an AI since I have suffered with joint pains from having rheumatoid arthritis since I was 35 - and will never go back there again.

My med. onco says that AI's are more effective than the Tamoxifen family for treating hormone pos. bc. My rad. oncologist says the statistics are very close for the different types of antiestrogen drugs and agreed with my reasons for wanting to take the Toremifene. I have had a hysterectomy so I do not have to worry about the possible problem with uterine cancer. So for me I think this drug is the right choice.

You can google Toremifene and do some research on these antiestrogen drugs and their side effects and make up your own mind. I sometimes think some doctors push one drug over the other because of the pharmecutical companies - rather than trying to match the best drug with the patient's needs and medical history!

Good luck as you continue this journey!

Judy
 
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samrenfro replied to judyfams's response:
Thanks for the great advice. I had seen on another post that you offered that advice, but I had completely forgotten about it. i will mention the prone position to my rad oncologist. I am early stage, node negative and still have enough breast to hang down.

I have read about Tamoxifan and Arimidex, but have not studied them too much. I looked up the side effects this morning and was not happy with them. I won't start taking the pills until after radiation - so have a little time to ponder the question of which drug to take. I don't have the joint problems that you have, but I know that it can promote bone loss. I am 69 and in great health (funny to say that with a cancer diagnoses). So, I am hoping whichever drug I take will not be too bad.

I still currently work full-time and am just about ready to call it quits full-time - but I need the insurance. What a conundrum.

I also support a disabled daughter who is 48. Sometimes I laugh and tell folks that we will all go into assisted living together.
Thanks again for the great advice. I'll be back when I start radiation and let everyone how it goes.

sam
 
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rachael67 replied to samrenfro's response:
Great news!!! Congrats!

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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sadblossom responded:
Hello sam,
That is EXACTLY how it was handled with me. All the events that have lead up to your onco-type testing is exactly how it was done with me.It is a form of routine.So don't put added worry on yourself. I was totally in the dark about the testing until the lab called me also.I even told the lab to hold off on the testing until I spoke to my doctor because I had no idea what they were talking about.The lab told me that they call in order to inform us that the test were ordered to be done because they are costly test and wanted to know if I could afford it and if I could not then they would qualify me for special funding. It was puzzling to me. However,I called my surgeon and spoke to her about the call and she explained it to me as this test was to see if my % of recurrance would be high enough to warrant chemo. Mine was not high enough, no chemo. I had a 17% chance of recurrance but taking Arimindex would take it down to 8%. And according to my doctors 20% and up warrants chem.So..............I called the lab back and gave them permission to do the tests and I take the pill. After this testing I was also informed that my cancer was not likely to be an 'inherited' type so my female family members could be at ease. Good test.
I had stage 2, grade 2, 2cm tumor IDC. Hormone postive. Had 8 nodes removed, 2 had cancer. Also had 30 radiation treatments.It took 3 surgeries to get to clear margins.
The possibility of chemo was never mentioned to me either until I was told about the onco-type test. But my diagnosis was no worse after the testing than it was before the testing.It does NOT mean they are keeping any info from you at all. It is a routine method of protocol. They only give us a certain amount of info at one time because it is all so overwhelming and alot to absorb all at once. So please do not worry and by the way, you DO want this testing done.It plays a big role in your diagnosis and your treatment.And please do not worry. I would think that EVERYONE on this site has had the test.It does not by any means mean you are worse than being told.They are just getting more definite answers to what they mostly already know. And yes, I went thru the same thing. Normal. If I can answer any more questions please just ask.I hope I was of some help to relieve your mind.
Please return and let us know what you find out but do not stress out over this test, no need.
God Bless!
Pat~sadblossom
 
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bcdevil replied to sadblossom's response:
Pat,
I'm kind of confused, and with my surgery being Thursday i want to know if this is a test that i need to ask for, or is it done routinely? I'm having the double mast so do you think they will do the oncotype on me? I thought the chemo decision would be solely based on lymph node status. My mind is just reeling these days as i get closer to thurs. Please advise me is i should ask for this.
Strength and hope sweetie,
Sandy


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