Oncotype DX Score of 25

SheWra · December 2018

Of course my score is 25! Right on the border, yikes. 25 = no chemo but a score of 26 = chemo. Is there anyone else out there who is right on the cutoff of 25?

I made it through so many hurdles. Negative lymph, ER+ HER2-, great margins after mastectomy, no radiation and now no chemo! I should be thrilled but now everything makes me nervous. I had two different types of cancer in my right breast, Invasive ductal, grade 1 and invasive lobular, grade 3 pleomorphic. The second one, the bad boy, is what makes me nervous about no radiation, no chemo.

This just plain sucks! I am 60 years young, postmenopausal, no uterus or ovaries so should I be confident the Tamoxifen will be enough?

I think I am looking for some positive support here,

Thanks

edwards750 · December 2018

Tough call girl. What does your doctor recommend? Idk no radiation or chemo is a dicey decision IMO. My sister had a similar score with ILC and she didn’t have either treatment. She had a MX and took Arimidex. Her BC came back after 4 years. It’s near the MX scar so not metastatic but it’s still a recurrence. Now she has had the radiation treatments.

Of course that doesn’t mean yours will come back but no treatment at all would make me nervous too. It’s kind of like Russian roulette.

If your doctor is indeed advising no treatment I would get a second opinion. This is too insidious and unpredictable a disease to take any chances.

Remember it’s your body, your life and your ultimate decision. Just be sure you don’t second guess yourself or look back and wonder what if..

Good luck and keep us posted.

Diane

SheWra · December 2018

ouch, thanks Dianne:

Breast surgeon said no rad necessary. Could probably have had a lumpectomy but I’m so small went for total mastectomy. Margins grrater than 2cm all the way around. Onc Dr. is fine with no chemo. So tough because I am super afraid of what chemo will do to my body as well. I decided no chemo with his blessing. Yes, second guessing but my gut tells me stick with no chemo.

Thanks so much for input

KBeee · December 2018

When they did the oncotype, did they test both types?I am thinking the grade 1 would give a different oncotype than the grade 3...but I am not 100% sure. You might want to ask that.

Meow13 · December 2018

Which tumor was sent to oncodx? Like you I had 1 ilc and 1 idc tumor but I only received one oncodx score. I don't know which tumor was tested.

LPLlibrarygirl · December 2018

SheWra, you made the best decision, for you, at the time. Or at least that's what my friends keep telling me about a similar decision I made. My oncotype was 29. I figured it was only 4 points over and I declined chemo. I am 68 and very active...and hopeful. My doctor said she would support my decision. I had a lumpectomy, 2 surgeries because the margins weren't clear. Lobular cancer is so elusive and tricky, as you know. I am ER+, PR-, HER2 - (the score was really in the equivocal area, but they called it negative) They thought my tumor was 1.6 cm and it turned out to be 3.7. That was devastating to me. And yet, I said no to chemo. I guess I couldn't imagine being sick. So now I will just probably worry about the no chemo, the questionable HER2, the 90% estrogen level, the elusive lobular...it goes on and on, doesn't it? If you take Tamoxifen be sure to get liver enzymes checked (you probably read about that from CanadaLiz in another thread). I am sure your doctors have a lot of experience with situations similar to yours, have the most up to date research information and really want you to have the best possible outcome. I know they don't like to tell us what to do, but I don't think they would let you make a decision that they thought was dangerous without discussing it with you. Share your concerns and get that second opinion if it helps. I always ask my docs what they would recommend for their mother!

Wishing you all the best.

windingshores · December 2018

One of the posts here says "no treatment at all would make me nervous too." Tamoxifen and aromatase inhibitors ARE treatment, and potent treatment at that. If you are hormone-positive, these drugs provide a good deal of safety. None of us has certainty but if chemo would be tough for you, it seems you have done a good cost/benefit review and can move forward.

The Oncotype report give information on your risks, with and without Tamoxifen, and also the benefit of chemo in your case. The company, Genomic Health, can be helpful with questions.

Have you considered a Mammaprint to clarify the situation? It only has high and low risk, no intermediate.

I am wondering why, if you are post-menopausal, you are doing Tamoxifen and not an aromatase inhibitor.

dtad · December 2018

Meow...same here. I had one Oncotype score with an IDC and ILC. Also do not know which they tested. Not convinced Oncotype test is the end all be all. Doesn't make sense that they would only test one tumor type. Good luck to all.

etnasgrl · December 2018

My Oncotype result was a 27. (This was in 2015 when 27 fell in the intermediate zone.) Given my age, (41), my oncologist wanted me to do chemo, but told me honestly that they just didn't know if the benefits of chemo would outweigh the risks. Knowing that, I declined.
Chemo is a POWERFUL poison/drug, which can do A LOT of damage to your body as it kills cancer cells. Some women have life long side effects. That scared me. I just could not put my body through all of that without knowing that it was receiving at least some benefit.
Some may disagree with my decision, but I made the best one for me at the time, with the information that I had. That's all any of us can do.
I did move forward with radiation and have now been on Tamoxifen for 3 years in February.

edwards750 · December 2018

winding shores - let’s don’t dissect that comment. Everyone knows it meant chemo or rads. Come on.

FYI I took Tamoxifen and I am post-menopausal because my drug of choice was Arimidex and it attacks the bones. Not the best choice for a person who has osteopenia.

Diane

Meow13 · December 2018

I agree hormone therapy is strong and effective treatment.

windingshores · December 2018

Edwards, my comment was intended to be helpful for a relatively new person who might not have confidence in hormone treatment only. I know I felt that way. I was trying to be reassuring. I am going to stay off this forum- I don't want to deal with unmerited hostility as well as cancer.

windingshores · December 2018

Also I had severe (unmedicated, due to reactions to meds) osteoporosis and was still put on an aromatase inhibitor at a major cancer center. It depends.

Meow13 · December 2018

windingshores, are you still taking AI's? Did your condition get worse? I still have lingering pain I hope it isn't bone mets. I think bone mets are really painful but not sure.

windingshores · December 2018

My bone density got 5% worse the first two years. I am entering my 4th year and just had a bone density scan and it is again worse, but less than the first two years (maybe 2%). I would rather be disabled than dead, frankly. I am doing fine thank to Tai Chi.

Many of us are in pain a lot so I have no idea how we know if we have mets.

voraciousreader · December 2018

in addition to getting the Mammaprint genetic test, I would recommend that a tumor board review your case and/or get another opinion from an medical oncologist. The tumor board includes a pathologist, radiologist and MO, so the review should be thorough.

Good luck

Sissy60 · January 2019

new here. I just got my oncotype result which surprised my doc and myself.. was 30. Been in a state of panic since getting it. When I got path results after surgery it was all good... clear wide margins, no lymph node, told it was stage 1b grade 2. Then with the Predict tool it gave me 3% benefit of chemo (at 2pc they don’t even offer it) so was very happy that I’d escaped. Wish wish I hadn’t done DX test. A fair few women I know have had my type of scenario (I’m 60) and just did radio and hormones. They didn’t have or weren’t offered the test... so are in remission without fear. And are all fine a few years down the line. I have to decide what to do. 30 isn’t sky high and was the intermediate cut off until recently (why change it?)but fear I will be panicking about recurrence yet chemo is no picnic and can having lasting effects. And is no guarantee. Plus I cannot see how I need it with my path results but I know oncologist will want me to go for it. So weird as they’d changed the the number from 30 to 25 so recently . All the tests and studies refer to intermediate as 18 to 30. It seems I have a 19% chance of a distant recurrence over 9 years but that’s 81% none. What a decision to make. Not slept or eaten. Still rcovering from surgery:( Don’t want chemo....just normal life lol

Good luck all xx

pupmom · January 2019

Sissy60 it would help if you put your stats into your profile. I don't know how to respond otherwise, but best wishes and

Sissy60 · January 2019

oh dear they were meant to show at the bottom but I must have done it wrong. A 2.4cm estrogen breast cancer. Ductal invasive. Clear wide margins and no lymph node or vascular involvement. Was told Stage 1b and grade 2. I’m in UK. . And my Predict score was 3pc benefit from chemo and they don’t offer it at 2pcent so was very happy with path results. Been knocked sideways with oncotype score. Although 30 isn’t mega high it’s taken away any peace of mind I had got back since surgery results. This is a rocky road for sure any others not had treatment with score of 30? Is it really that accurate?? Was planning for radiotherapy and hormones. Been a puddle for two days weeping and imagining I had a nasty tumour not the gentler one I thought....im 60, all the nurses I spoke to said my results would be low recurrence .:

Meow13 · January 2019

Alot of BCO members took their stats out of the profile as a precaution since BCO was using Outbrain. That info will show up in public Google searches. I believe private messages are private.

SheWra · January 2019

So similar to my decision. I’m also 60. I just barely made the cutoff for no chemo. I also did not have any radiation. I will most likely worry the rest of my life but my gut told me chemo would be overkill and I knew the level had been lowered to 25. I decided on no chemo. Had I come in at 30, I would have done chemo. I know how you feel about wishing you had never taken the test. Hugs and best wishes to you

edwards750 · January 2019

I’m glad I had the test. Mine was the Oncotype test. My MO recommended my taking it because I had a micromet in my SN. My score came back at 11 so I dodged chemo. I did have radiation though -33 treatments in fact. I also took Tamoxifen for 5 years. I was Stage 1b, Grade 1 IDC. I also had a lumpectomy. I’m 7 years out last August.

I can understand why you don’t want to do chemo. Who does for that matter? I don’t understand why you guys are refusing radiation as well with the scores you have. Why tempt fate? I have an 8% chance of recurrence. Of course there are no guarantees but I had a much lower score and my MO recommended radiation even with my score. It was no big deal for me. Little bit of burning and fatigue.

It is definitely your call but why would you want to subject yourselves to a constant state of anxiety questioning your decision? There is plenty of that going around just by having BC.

Whatever you finally decide just don’t second guess yourself or look back and wonder what if...

Diane

SimoneRC · January 2019

Hi Meow13!

I am rather technologically unsavvy! Can you give cliff note version explanation of the Outbrain and Profile issue? Just changed mine to private after reading your post. Wondering if I need to ditch signature as well? And, does just switching to “Private” do the trick or is there a need to get the information off the site entirely?

Thanks so much!

Meow13 · January 2019

I was not very happy about the big data collection I felt the profile could be used for marketing. Everything posted on BCO is public I believe private messaging is still private. Many of us are looking for answers and may leave us open to opportunistic companies. I participate to give my personal experience for others just "joining" the club.

http://www.spywareremove.com/removetrafficoutbrain...

Oncotype DX Score of 25

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