Oncotype DX Test Results - Score of 20 & My decision on whether to do chemo
It was just my luck that the doctor should tell me that my score was a 20. The doctor said that I fall into that 'grey area', where they are not sure if chemotherapy is needed or not. He told me that the option to do chemo was up to me.
The odds of the breast cancer returning, either in my breast or anywhere else was 12%. Radiation and hormone therapy would lower the odds down to 6 percent. If I choose to do chemotherapy it would only lower the odds by another 1%-2%.
Why would I want to do chemo if it only lowered my chance of recurrance by only 1 or 2 percent? I suppose because a one or two percent chance could mean the difference between life and death. The doctor told me the chemo drugs I would be given and the side effects I would have.
The first drug is Cytoxan. The side effects are as follows:
- Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
- Hair loss. Temporary - usually begins 3-6 weeks after the start of therapy. Hair will grow back after treatment is completed although the color and/or texture may be different.
- Nausea and vomiting, more common with larger doses, usually beginning 6-10 hours after therapy.
- Poor appetite
- Discoloration of the skin or nails (see skin reactions).
The second drug is Taxotere. These are the side effects:
- Low white blood cell count (this can increase your risk for infection)
- Low red blood cell count (anemia)
- Fluid retention with weight gain, swelling of the ankles or abdominal area.
- Peripheral neuropathy (numbness in your fingers and toes) may occur with repeated doses.
- Nausea
- Diarrhea
- Mouth sores
- Hair loss
- Fatigue and weakness
- Infection
- Nail changes (color changes to your fingernails or toenails may occur. In extreme, but rare, cases nails may fall off. After you have finished treatments, your nails will generally grow back.)
The side effects make chemotherapy sound very scary. Escpecially when it would only lower my odds of the cancer returning by 1%-2%.
I asked the doctor why I should consider chemotherapy. He told me that even though they did the lumpectomy and the tumor came out with clear margins (they got all the cancer from the tumor) and the cancer did not spread to my lymph nodes it still could have spread through my blood stream. He told me that it could be in my lungs or somewhere else right now and could eventually grow and spread. He said that the chemo should kill these cells, where ever they may be in my body. I say 'should', because it is not guaranteed. This is why my chances of the cancer returning would still be about 4%-5%.
The doctor also said that since I am only 37 years old I should consider doing chemotherapy. I felt hopeful when he told me that I still had a good 48 years left in me and the chemo would help to acheive living into my 80's. He went on to state that he wouldn't recommend chemo to someone with the same results as me if they were in their 70's. He said the one or two percent wouldn't be worth it to them because the chemo could cause unrepairable damage to an older body.
After he gave me all of the facts I knew it was time to make my decision.
One thought came to my mind when I was trying to decide if I would should agree to the chemo treatment. What if I refused the treatment and the cancer returned in two years? How would I feel about my decision then? Of course I would greatly regret it.
And what if I agreed to do the chemo and the cancer still returned in two years? At least I would know that I did everything I could to fight it.
As much as I don't like the thought of losing my hair, I would much rather be alive and bald then dead with perfect hair!
I start my first chemo treatment on March 20th.
I would love to hear your comments. Please let me know if you have been through this and what your decision was. What was it like and do you think you made the right choice?
If you would like to talk to others or share your story, I have created a forum for discussion.
UPDATE: You can read about my first day of chemo and the side effects I had for 21 days.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I created some Breast Cancer Shirts that I have for sale on my site at YouDeserveIt.com
I created these after being diagnosed with breast cancer. I tried to find shirts for sale on the internet and was shocked at the high prices. So I decided to make some myself. Your purchase of any of these shirts will help me in my battle of breast cancer. If you have a suggestion of a shirt I will try to make it. Please let me know what you think by submitting a comment.
$20.00 $23.00
$20.00 $18.00
Your situation is very similar to mine. I got my oncotype results today and I am a 20 too. I have the same options and it is a very difficult decision to make. Reading about your experience is very comforting to know I am not the only having to make the right treatment choice. I wish you the best
Reply to this
Hi,
You are right, it is a very difficult decision to make. I guess we never really know if we are making the right choice, either. We can only do what feels right to us. I am interested in knowing your final decision. Have you decided to do chemo? Whatever your choice, I hope all goes well for you!
Reply to this
Hi, I had a similar situation--my oncotype was 15! but because I'm 42, they convinced me to go ahead with chemo (TC, like you). I spoke to 4 different oncologists and only 1 said I should skip chemo. They want me to live to 80, too! I'm all done--4 treatments at 3 weeks. Bald and tired. Now I don't know whether to do radiation or mastectomy (I had a lumpectomy, but there were isolated tumor cells in my sentinel node, so there would be a case for mastectomy). I'm sad to lose my breasts. I have to decide in the next few weeks. Another thought about the chemo is that it did stop my periods, and since I'm ER/PR positive, that will be helpful to starve any remaining cells. Sigh. All of it is sad. However, better any of this than not living. Good luck to you & thanks for sharing. I like your T-shirts!
Reply to this
I forgot to ask you about your ER+ status... do you mind sharing what your percentage is? Mine is only 30-40% receptive... which makes me thing hormonal treatmeant and mastectomy won't do the trick.
Reply to this
Hi Peggy,
I am ER Positive also, but my paperwork does not give a percentage. I am HER2-, Grade 1, Stage 1. After I am finished with chemo I will be doing 7 weeks of radiation and then 5 years of the hormone treatment. Thank you for your kind words in your other comment, and I will definately keep writing. It's the only way I know to help others who are going through this, too. Have you decided to do the masectomy? My doctor told me that it didn't lower the odds of the cancer returning, which is why I decided on the lumpectomy. I was going to get a masectomy if my BRAC1/BRAC2 gene came back positive - which it didn't!
Reply to this
Glad to read your comments...I too had a score of 20; no cancer in the lymph nodes and all tumor margins were clear. My oncologist understood that I wouldn't want chemo because of underlying health problems ( enlarged heart ) and my age being a big factor...almost sixty. I hope that I've made the right decsion; I believe that I have. Thank goodness for this test!! Best of the best to you!
Reply to this
I just returned from my appointment with my onchologist regarding my oncotype DX results. I have a score of 20. I am ER and PR Positive and HER2 negative. He explained that I had a 13% chance of recurrence and that if the cancer came back, it would likely be in my bones or organs first before it came back to the breast. He explained that if I went with the chemo, that it would lower the recurrance rate by 5 to 7%. I feel that if I could lower my chances from 13 to 5 or 7% that it would be worth suffering 3 months of chemo. I will be starting chemo next week.
Reply to this
So glad I found this page. I just got my Onco score this week. It was a 20. I had a masectomy to remove an early stage 1, grade 1 ER+ PR-, HER 2- tumor. It was unfortunately too close to the skin so I have to have radiation on my reconstructed breast. I feel like I have a new lease on life and am living every day! I also recently lost weight which played a big factor with my health. My onco gave me the same information and same percentages. I am not really worried about the side affects going through chemo as I am about the long term side effects. My aunt had chemo to treat her breast cancer and has never been the same. Therefore I am choosing to forgo chemo and go the route of radiation and tamoxifen. Unless the doctors tell me something profoundly different on Tues. BTW I am 44. Everyone has to make the choice that is right for them and unfortunately this is not an exact science. If my score had come back 35 or higher I would go through chemo in a heartbeat. But with a score of 20, I just feel that I do not need to overtreat and I should get on with my life. There is a study going on right now called TailorX to determine whether or not chemo provides benefit to those that are in the intermediate group. I think we are all strong women and will do well no matter the choice we make. Its ours to make.
Reply to this
Just wanted to say that I actually decided to go through with the chemo and so far it has not been that bad. I'm reading the blog and I think I am having the same kind of non-reactions. Thank you for sharing!!!
Reply to this
I am struggling with a similar decision. I am stage 1, negative lymph nodes, ER+, PR+. Her2 -, 2 cm tumor, grade 2. My surgeon called weeks ago to say my oncotype was 15 and since the cut off for low risk was 19 I wouldn't have to worry about chemo. I then went to see the oncologist and she said, the cut off for low risk is now 11 and I do need to decide whether to do chemo. I have been reading everything I can find about oncotype testing, the tailorx study and chemo side effects. I'm 48 with two young children. I want to do everything I can to remain cancer free, but I also don't want to inflict needless treatment on my body. I'm not comfortable letting the computer decide. I would appreciate hearing what other women in my situation have decided and why.
Reply to this
Amy, My decision was based off a scale that had a score of 18 or below as low. The score of 18 or below and the characteristics of my cancer would have resulted with a lower risk of reocurrence (around 5%). The score of 20 showed that my risk of reocurrence was around 13% and chemo lowered it to 5%. I was torn. I think you should ask to see the differences in the reocurrence with and without chemo to better understand and make your decision. However if it helps, let me tell that chemo just has not been that bad! I pounded water 3 days before and all the way through the first week. I have been out to dinner frequently and am going to events constantly. My hair is starting to thin but on the bright side I don't have to shave my legs anymore. I have my second treatment next Fri. If you decide to do chemo, go in with the attitude that you are going to rock it and that it is over in 12 weeks! But get the info first. And from reading everything that I looked at, the TailorX study lowered the scores for their study and I believe 11 was the cut off for low risk for the study. I hope this helps and am wishing you all the best with your decision. Kimberly
Reply to this
Thanks for the amazing post, Now I will read time to time that...
Reply to this
it seems to be nice collection of plus size clothes since many of my friends are plus size and she didn’t find there choice of clothes so i think it would be nice option for them.
Reply to this
I like your style, the fact that your site is a little bit different makes it so interesting, I get fed up of seeing same-old-same-old all of the time. I've just stumbled this page for you
Reply to this
This is my first time at your blog and I've really enjoyed looking around. I will come back again in the future to check out some of the other articles.
Reply to this
I can see that you are an expert in this field! I am launching a website soon, and this information is very useful for me. Thanks for all your help and wishing you all the success in your business.
Reply to this
I was very pleased to find this site.I wanted to thank you for this great read!! I definitely enjoying every little bit of it and I have you bookmarked to check out new stuff you post.
Reply to this
What an interesting blog! Thanks for the write up.
Reply to this
Good article...I will use some of these interesting principles myself...more great info please...
Reply to this