Decision time- Oncotype dx 30

Jackbirdie · February 2015

Hello all! I've been lurking around a bit, listening and learning. This is my first post. Most of my info is in my siggie. I am 57, live alone (except for my wonderful doggie companion). Yesterday was my second onc appt., at which we reviewed many test results. I have spent a lot of time reading over the last two months. I try to stop before I get too freaked out, and I have tried to keep Dr. Google off my medical team....

I have had a very difficult time recovering from surgery, lots of pain. I have as many words for pain now as the Inuit has words for snow. Well...almost. I wore my welcome out at the surgeon asking for pain med refills. I have a terrible scar. I was warned about underarm "dog ears" which would not have been visible every time I looked at myself in the mirror. Instead, I have two 1-2" mounds an inch apart in the middle off my chest. I feel quite like an ogre. I have learned here that if it doesn't improve to my satisfaction, I coukd have it dealt with with ps later. No plans for reconstruction. I don't think I would make a good candidate for another surgery. I started PT but it made it worse at first and then I got bronchitis and violent coughing was brutally painful. I'm starting to feel better finally, and I plan to start PT again next week.

I understand my pathology, and believe I understand the numbers. Well enough to understand that there is no safety in them. I am fairly healthy. Other than BC. I was very lucky to find a good MO, who recommend a CT/PET an an Oncotype dx before I even knew I needed one. I stepped up my reading to be able to use his time effectively.

Because I prepared myself, I was not doubled over when I got the results. I feel very fortunate that I was not among those who already have mets, via non lymph node travel. That was the good news. The more troubling result was the Oncotype. My score was... Is.... 30. I have come such a long way in understanding what all of this means. But I'd like to share my thinking and ask for others' experiences to help make the chemo decision (which btw, mo suggests TC, no A, due to my age and his general concern about irreversible heart damage with A) followed by Tamoxifen, a dissappointment, since blood tests revealed I'm not completely through menopause. I thought I would be on an AI. Maye the second 5 yrs he says. What a woman! No period for for years, but I'm still a little estrogen factory. ;-( Anyway,, I understand that at the high end of the intermediate onco score, I will only benefit an additional 4-5% by adding the chemo. I have two thoughts. One is I seem to be a wuss. I fear I will not tolerate chemo well, although it's only 5 months. My other, very divergent thought is I wouldn't want to look back later at this one chance to stop it at early stage, and regret I didn't do all I could to fight for myself.. I know there are no guarantees. Sorry this has been so long. I appreciate any input

Jackbirdie · February 2015

not sure why my dx info etc didn't show up. I have it set to public..... Maybe post was too long doh, showing up now.

Meow13 · February 2015

Hi Jackiebirdie, my oncodx was 34. It was bad news after the relatively good pathology. I chose no chemo about 3.5 years out so far so good. I just didn't want to risk my self with chemo but many come through it unscathed. I think the AI meds really aged me hopefully I will be off them after 2 years. I was 53 when diagnosised I will be 57 this year. Other than having had cancerous tumors I am in good health. I would do cold caps if in the future I need chemo. Good luck to you.

Jackbirdie · February 2015

Thanks Meow! How wonderful you are doing so well. I worry about the hormone treatment as I already have joint pain. Best of luck getting off them soon

Nash54 · February 2015

hi jackbirdie....I was dx at age 59. Oncotype was a 24. No chemo for me based on recommendation of my breast oncologist surgeon. I'm on Femara and so far no problems.

Professor50 · February 2015

Hi Jackiebird, I just wanted to say that it is big decision. One thing I hadn't thought of that I have noticed in surveying this message board is that some women start chemo and don't finish. Even if you agree to start chemo (or really any treatment) you are still in control of your own treatment. When my MO and I discussed chemo she said that the key is to remember that you will always feel different when it is over because you have aged during the process. So, you never will be "back" to the you you were. It sounded like she was suggesting that I trade in a year of my life as a 50 year old for many more years of my life as an older woman. I don't know how I felt about that. (Ultimately my score was too low to justify that exchange...). But anyway, the point is, keep in mind that your ability to make decisions doesn't end if you agree to chemo or anything else. And you never know how things are going to be until you give them a try.

bluepearl · February 2015

Hi Jackiebird! I have had two breast cancers, unrelated, and didn't get chemo for either. The second one was a grade 3 but .8mm which is considered small and oncologist didn't recommend chemo. Didn't have the onco score altho I was willing to pay for it. Who knows? Trust your gut feelings. Lots of women go through chemo unscathed but there are and can be after effects like neuropathies. Worry is an after effect if you don't do chemo but then that is also manageable. I worried about getting a second breast cancer which didn't stop it from happening so worrying was useless. Now I just go on with my life (altho my sister has stage 4 breast cancer and a spinal collapse because of it). Life isn't fair. We don't know what date on the calendar is marked for us. LIVE, LOVE and LAUGH!

Hopeful82014 · February 2015

Blue Pearl - thank you for sharing those insights. I am very sorry to hear of your sister's situation.

Professor - those are some helpful thoughts as well. I hope this will all be a moot point for me but it's ever so helpful to consider these approaches to the question, whether or not it ever arises.

Holeinone · February 2015

Jackbirdie,

Your bio did not come up on your first post because that is the way this website is set up. If you look at other threads it is always like that.

I had a lot of Cancer in the nodes & growing outside them, matted. Chemo was a given.

From what I have read, Adrmiyicin ( red devil ) is the chemo that effects the heart, and makes you the most sick. I had to have a echocardiogram last week. I had shoulder surgery, so it was precautionary. The tech that did the test, said they do not see near as much heart problems as they once expected. She said years ago, someone in my position would get one every 3 months.

I was 58 when I was dx & had chemo & rads. My Breast surgeon was super open, honest. He said several times If you were my wife, this is what I would want her to do. I agree with the post above, if you start chemo, and decide it is too much, you can quit. Same with Tamoxifien or a AI.

Cancer is sneaky & sucks! Good Luck with this decision

muska · February 2015

I am at a different stage, so my decision making process was somewhat easier: chemo was a given, and generally speaking my MO advised to get as aggressive a treatment as I could handle. I was 54 at diagnosis and in good health otherwise. I was still pre-menopausal but chemo put me in menopause and I was started on AI right after it. I do not feel any heart issues after AC, so haven't had any heart testing done since.

keepthefaith · February 2015

JB, it sounds like you are being very pro-active with your treatment and decisions; I think that's half the battle! Like others have said, it's a crap shoot. With an intermediate score, you should be eligible for a mammaprint test after the onco -test. I was offered it, but declined because I decided I would do the chemo anyway,with a 21 onco score. The mamma-print looks at more of the gene than the onco test does. My thinking was that I wanted to dance at my grandsons' wedding and would do all I could to make that happen! Chemo is not a cake walk, but for me, it wasn't as bad as I thought it would be. Good luck with your decision. Follow your gut and do what you think is best for you.

Meow13 · February 2015

Jackiebirdie, since you are both ER and PR positive AI treatment should work well for you. I am going to ask doctor for a prescription for pain so I can sleep better at night from the exemestane. Let us know what you decide on treatment.

JeniisStrong · February 2015

Hello all! I find it so terrible that others are going through this too!! I am 31, single, 1 child, and a few years ago I had the scare of my life!! I ended up in the hospital for a month and was diagnosed with behcet's disease. I had to relearn everything from walking, to talking, to bathing myself and feeding myself. I'm still disabled from it. My fine motor skills are off a bit, my speech is difficult. I have to literally process what I'm going to say or do. I'm in the process of fighting for disability and I promise you that this is NOT where I saw myself at 31!! So what else could go wrong right!??! I was diagnosed with breast cancer!! I received the phone call yesterday while making dinner... and of course who has an appetite after that kind of news!? So I am still in the "shock" stage and I don't know where to go or what to do!? I thought that maybe having people to talk to that are and have gone through it would be a good thing!! I'm trying to stay positive about the whole situation! But I have to tell you ALWAYS follow your instincts!! My primary dr found the lump and he said to "just watch it", but it was so abnormal for me to have a lump. I have never had a lump in my breast before. So I was paranoid and got a second opinion. He sent me to mammography and they ordered a biopsy right then and there. I'm so glad I went with my instinct to get a second opinion!! I hate to think "why ME" but it's hard not to! Especially with what I've already been through! I'm horrible at keeping up with things, just an FYI, but I am going to try to stay here and really get support and knowledge. Anything is a helpful thing at this point!! My next step is an MRI to see if it is localized or if it has spread, and to find out what stage I'm in. They're supposed to call me today to schedule the appt! By the way, I was dx with invasive ductal carcinoma. Good luck to all! Many prayers and thoughts are with you! Hope to make some new friends!!

Hopeful82014 · February 2015

Jen - just a quick note to send support and a welcome to the club we wish you weren't joining. More later. ((((Jen))))

Trvler · February 2015

Jeniis: I am sorry you have to deal with this now. I hope you can find the support you need here. It has been a godsend for me.

Nash54 · February 2015

JenisStrong....so sorry for what you have already been through and for what lies ahead. It is such a shock to get the diagnosis of BC. Once the shock wears off then it's onto "get er done" mode. Please keep us posted. There are so many women here who have gone on before you and their wealth of knowledge and advise is invaluable. Sending hugs and prayers.

Moderators · February 2015

Welcome to the BCO Forum JennisStrong, you certainly have been through a lot lately and now IDC too! It is not fair but we wish you the best.

You will likely find more targeted support in the IDC (Invasive Ductal Carcinoma) Topic and may find the following reliable information from our main site interesting - IDC — Invasive Ductal Carcinoma where you'll learn about symptoms, diagnosis, treatment, etc.

Wishing you our best

The Mods

cubbieblue · February 2015

Jackbirdie, my Oncotype score is also 30 and we are about the same age. Like Keepthefaith said, I would check into the Mammaprint test which does not have the intermediate category. My Mammaprint put me at high risk and showed that I would benefit from the chemotherapy. To be honest, I was probably going to take the additional 4% benefit indicated by Oncotype and do the chemo either way. Let me know if you have any other questions I can try to answer for you. Best of luck to you.

JeniisStrong · February 2015

Thank you all so much! I'm trying to stay positive!! I don't really know my way around the site yet, as it's all new!

doxie · February 2015

JenilsStrong,

You are too young for this! On the IDC Forum there is a thread for pre-menopausal women. That may be helpful for you. I'm post, so someone else may have other threads that could help.

Jackbirdie,

My oncotype was 30 and I did TC x 4. I was younger than you and had been post meno for some time. The tumor was very low PR and very high ER with a high Ki67 of 40%. MO wanted me to do chemo and, since people in my family live to the mid-nineties, I too thought I should. Also I have a lot of odd allergies so was worried I might not be able to tolerate AIs or Tamoxifen. Turns out I was allergic to Neulasta, a shot you get a day after chemo to boost white blood cell counts. I was told the reduction for chemo was 7%. Now they have found that ER+ is more likely to recur after 5 years and the oncotype is not as good predicting beyond 5 years. It would be interesting to know how chemo affects this.

Hopeful82014 · February 2015

"Now they have found that ER+ is more likely to recur after 5 years and the oncotype is not as good predicting beyond 5 years. It would be interesting to know how chemo affects this."

It sure would be, Doxie! Hadn't heard that about the Oncotype but will make a note to discuss with my MO when the time comes. Thank you!

Chloesmom · February 2015

Jackbirdie hope you were able to come to a decision. My oncotype was 25 but being PR- makes me less responsive to the AIs. I started chemo 12 days ago. So far not as rough as I expected. I'm 62 so am on CT. They kept me well dosed with anti nausea meds so made it through week 1 ok and now finishing week 2. For me the possible % decrease in recurrence was worth the crap shoot. So far I'm happy with my decision, but it's such an individual choice. Wish you well!

JeniisStrong · February 2015

Doxie: Yes! I feel the same way... but as they say God only gives us what we can handle! That... or my past life was bad. I was a HORRIBLE person! LOL... and now I'm paying for it! Either way.... I'm staying positive! Thank you for your words and the info! I will have to check it out!

Jackbirdie · March 2015

hello again everyone and thank you for all your thoughtful input. I got a bit overwhelmed and had to get quiet for a couple of weeks and think. I had bronchitis and still a lot of surgery pain and was just miserable. Still have too much pain. But I made the decision to go forward with chemo. Starting 6 rounds, 3 weeks apart, of TC and Neulasta this Thursday (March 5th). It was so very personal a decision. Of course I am scared sh__less. But have gotten more comfortable after reading all you have shared. Thank you all. So far I'm pretty uncomfortable with the port also, but it seems to be getting better. The weather has been wonderful here in coastal Oregon, and I have been very pleased that I have been able to put cancer aside and enjoy spring, the birds, the hummers, my garden, and generally appreciate being happy with the life that I have. Mind you- I am not one who feels this has been a blessing. It's not. But I will do all i can..thats it. then i get on with it.

Jackbirdie · March 2015

thank you Chloesmom! Glad you are doing ok so far. Will be thinking of you. And Jenils-Strong, I thought I was going to have to get stern with a friend who started with that "God only gives you what you can handle" business. But I opened the card and it said "God must think you're some kind of BADASS!!!! HAHAHAHA

Meow13 · March 2015

Hi jackiebird, I will be thinking of you this week. I hope the chemo goes well.

Jackbirdie · March 2015

thanks agin, Meow, for keeping me in your sights

Decision time- Oncotype dx 30

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