Low Oncotype but grade3, chemo or no chemo
Comments
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JunJun, best of luck to you. I know your decision was difficult. I was looking at your previous post about the ER and PR scores you listed from your Oncatype test. It felt like you were fuzzy on the data and I wanted to offer some info. I looked at my printout to see what you meant. My estrogen was 90% and progesterone was 70%, but on the Onca test the ER score was 8.6 and PR score 8.3. The Onca scale only goes up to 12.0 while the pathology percentages go up to 100%. The Onca test uses a RT-PCR to determine RNA expression of the genes of your tumor to determine their scores based on their scale, and the pathologist usually uses immunohistochemistry of the tumor to report the percentages. My point is that while the score numbers and percentage numbers look drastically different, they are consistent with each other.
suz6, I am happy to help out! No, no decision yet. Am still doing research so that when I see the oncologist on Feb 2 can see what he recommends, etc., and we can talk about what is the best course of action for me. I might also get a second opinion. Saw the surgeon today (it was good to get out of the house!
) and everything is going very well. See plastic surgeon on Wednesday and am hoping to get my drains out then. I think that when the drains are out sleeping will be easier. -
limegreen, good luck at the plastic surgeon on Wednesday. My drains are still in (Wed. is week 3) so I really hope they can come out. Even with the drains, sleeping is easier now. Just give it time. You seem to be doing well emotionally which is good. I am overloaded with info and am taking the rest of the day off to not think about cancer.
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Good luck with your decisions ladies. It is hard, but when you make your choice you will feel peace, I hope.
On the node positive chart, the chemo benefit starts above 20, but it was based on a small study.
I really hope they will do a larger node positive study in the future.
I sometimes get scared I made the wrong choice, but I am living my life full out, and trying to create a healthy lifestyle.
peace
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limegreen, thank you for your information about the difference and consistency between the oncotype ER/PR score and the percentage of pathology report.
I thought I was in the very high expression group of ERs and PgRs, so I predicted that I would be in the low-risk group of oncotype test. To be frank, I tried the test for my peace ! -- oncotype test is not popular in my country and my doc didn't recommend at first -- I was shocked when the score missed my prediction. oops!
Anyway, if I would not try the test, I would not understand my place and would not think about any additional treatment. My doc changed my treatment from 5 years TAM and 2 years Lupron (this is popular treatment for my pathology in my country) to 5 years Lupron, 10 years (?) anti-hormone drugs (now TAM), and 5 years Zometa (twice a year) after my oncotype score. Enlargement of hormone-therapy is proposed by my doc due to my decision not to do chemo. SE of hormone-therapy for me is very mild except for slight elevation of blood pressure (!). I think my treatment is not normal, but not bad. I think this is a very personal choice and other ladies may have other stories.
Thank you all, and thank you Shizuka for creating this thread. -
Got my drains out this morning -- yeah!, but oh...my...goodness what a very strange feeling!!! It hurt but it wasn't as bad as the nuclear injections I had just before my surgery. What I am looking forward to the most is that I can shower now
suz6, now we have to get YOUR drains out!
JunJun, good to hear from you. I am glad to know you have made a decision and are seeing it through. Don't look back, go forward and be well! Let us know how you are doing.
cookiegal, I'm with you, I wish there was more info too. I think you have a great attitude!
Smile when you can!
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limegreen. Yeah now are you getting your expanders filled? I was able to get one drain out. And I got the okay to drive. Maybe it is my age or something. I don't know if this is the place to ask, but are you going to go with gel or silicone implants?
I admire all you women who are making these difficult choices. You are so positive and encouraging. Thank you. I am waiting for my oncotype tests. They are testing the nodes from both sides which is good. I am also having a CAT scan monday. I just need all the information I can before I decide if chemo is the way to go. Peace to all of you.
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I am having to decide whether to do chemo myself or not. My lump was only 1.2 cm, grade 3 (due to irregular shape). AT first I was stage 1, no chemo, only radiaiton. After sent. node removal last week, node came back positive, but dr said it was only microscopic, so barely seen. He said he could consider it to be negative, but since there was a small spec, it makes it positive. So that put me at Stage 2A.
His personal opinion was that chemo would lower my risk by 5-6%. To me, that is not a big enough margin for me to do it. We decided to do the oncotype test and wait to see what the results are there. If lowering risk is less than 10%, I will NOT do the chemo since I will be taking Tomaxifen for 5 years. I will know on the 10th. If I do not do chemo, I will not have any regrets, since being on TAM and will be monitored every 6 mths. People that do have chemo do have reoccurences. I was told TAM pill alone lowers risk by 50%.
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Happy Sunday! Yesterday I was able to shower for the first time in 17 days. Sponge baths are okay and my honey washed my hair for me but to finally stand under that warm water.....
suz6, good to hear one of your drains is out. I hope you are feeling better all the time. As far as I'm concerned, you can ask anything you want. I am so happy to be a part of these discussion boards....I feel like we are all here to support and help each other through this. It is comforting that the changes, questions, and frustrations I experience are mostly common and I don't feel so alone. So many ladies have reassured me, offered advice or just listened and for that I am truly touched and so warmly grateful! I am happy to share whatever information I can about my experience and hope that it might make a difference for someone else.
I have saline implants. I thought I would have the expanders put in during surgery and then do the exchange later to silicone, but during the visit with my plastic surgeon a few days before surgery, he showed me something else which I really liked. The expander he put in during the mastectomy is the permanent implant. He showed it to me in his office. The expander has a tube coming out from it with the plastic port at the end. The expander sits in the breast cavity where it will stay and the plastic port (about the size of a quarter) sits just under my skin on the side of my breast under my arm. To fill the expander he injects the saline like a shot through the thin layer of skin into the port. I don't know how many times he will take to fill, but once my expander is filled to the max, and I am stretched, he will take a little bit of saline out to prevent capsular contraction. After all is okay with that, then in his office he makes a small incision in my skin to take the port and tube out. The expander is meant to be permanent so when he pulls the tube out the expander is self-sealing. He has been using this for a long time and says it works very well, plus I don't have to have a second surgery to make a switch. He has had patients who have had them in for as much as over 10 years with no issues. (plus, if by chance the saline breaks, your body just absorbs it). Also, I was a little afraid of the silicone, eventhough I had read they are safe now but, I was glad he suggested these saline ones for me. (wow! I just looked at this, hope it isn't too long)
I saw him this past Wednesday and I see him again on Feb 17th for my first fill. Before my surgery I was lucky if I could find a AA bra to fill out, but the expanders he suggested for me will give me an A-B size. I am hoping for as close to B as possible. My expanders have a 375ml maximum and during my mastectomy he filled each with 200ml. I don't know how much he will put in at the fill in Feb.
Good luck with your CAT scan and keep us posted on your oncatype test results.
Janina, nice to hear from you. The oncatype results will hopefully clear things up for you. When do you start your radiation?
My oncologist wouldn't give me any solid advice until ALL of info is in, which is good. He doesn't want me to expect one thing and then advise something different once all the tests are back.
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Janina, I am in such a similar situation as you are. I had one micromestasised node on the right side. That is why I am glad the lab is oncotyping nodes from both sides. Since I had a bilat masectomy, I am not doing radiation though. Let us know what you decide about chemo. I should be getting my results about then too.
Limegreen. Thank you so much for your info. I will mention the permanent expanders to my plastic surgeon. It is too late for me now, but I do appreciate your input about the saline. I too hope to fill a B cup at least. You would think with 4 kids, I would have had a little something. Not. This is my chance. Hurray! The date for implant surgery is June 28th so chemo or no chemo, I have something to look forward to at least. And I am trying to look at the positive end of all this.
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Not sure when I will start radiation. I go in on the 10th to find out Oncotype results. Does radiation come before chemo???...or how does that work.
I pray NO CHEMO!!, but am preparing to hear that I have to...so if I dont, that will be GRAND news!! lol!
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I had Grade 3 and an oncotype score of 9. I did not do chemo. I didn't have rads either because my surgery choice was bilateral mastectomy. Good luck to you in your decision. When you're balancing the pros and cons of chemo, keep in mind that chemo can do a lot of damage to the healthy portion of your body. You can PM me with any questions.
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Saw my onc the other day and he recommended chemo, TC, 4x every 21 days. I am seriously considering it, but have appointments in the next few weeks for 2 other opinions. I have no lymph node involvement and am truly on the fence with an onca score of 20. I hate being borderline!!!!
I will do chemo if I feel it is the best course of action for me. I have been reading about it and trying to get a perspective on the benefits of someone with my diagnosis. My onc said that one of the factors was that my ER was 90% positive. I have come this far, I want to make the right decision for myself. I know there are side effects but I have been reading several strings and the ladies mostly say it is doable.
Janina, my friend, you are having a tough time, I feel for you, it is a very difficult decision. I hate to say it, but microscopic involvement is involvement. You have to be honest with yourself and know exactly what you are dealing with so you can take care of yourself. I read on one of the other strings you are so upset about loosing your hair. I want you to know it is a natural reaction. This awful thing we are all dealing with is not only life changing, but it can change our outsides as well. The bright side is that if you choose chemo, you will get through it and your hair will grow back. Have you been on the Taxatore/Cytoxin string? Those ladies are wonderful and very honest about their journies. You are not alone and especially if you end up choosing chemo, you want to have those ladies by your side. (by the way, I'm on your side too) Good luck and let us know what you decide.
I have to say on a light note, my implants kind of make me laugh. I have bi-lat mast with TE and the TE are not full, so in trying to see what they feel like, it's kind of a strange experience. In the doc's office I was glad he let me hold the filled up implant and then the empty expander. I am a curious person and it helped me know what to expect. When I feel around on my skin, I can feel places where the expander isn't full yet and I kind of feel like a baggy waiting for the rest of the food
, and right now my breasts kind of pucker out on the sides toward under my arms where the fill port is located under my skin. It is a curious experience for me watching my own metamorphsis. I just hope I am indeed a freakin' B cup when this is all over!!!!
Hey suz6 - what's going on with you??!
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Hello ladies. My oncotype score came back 46 with about a 31% chance of recurrence; since I am in the high risk category, I am starting chemo next Friday. It seems strange to start chemo when, at this moment, I am cancer-free. My mind is not in the best place right now although I knew I would go through chemo if the oncotype score was in the high-risk category. However, many women have gone before me so it is not as though I am forging new terrain. I am scheduled for 4 treatments of T/C every 3 weeks. I am just going to keep my body as healthy as I can right now. Whatever course you decide we support you. It is a difficult decision.
On a happier note, my drains are out, the expander will continue to get filled, and I am on my way to a B cup.
Limegreen,
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suz6, good to hear from you and am sorry to hear of your high onca score. I am rooting for you and know you will make it through! A string you would want to check out is called "'Anyone on just Taxtotere and Cytoxin"'. Those ladies are wonderful. I have been on it so in case I have to do TC I know what to expect as these ladies are very honest and helpful. If you are going to do the TC let this group embrace you!
Am glad to hear your drains are out! Eventhough the doc said I could shower that night, I waited a few days anyway because I was still afraid to get them wet with the soap and all in the shower. It seemed to help.
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I will check out the TC site. Thanks. Limegreen, What have the other doctors said about your needing chemo? A book you may want to check out is the new edition of Anti cancer, A New Way Of Life by David Servan-Schreiber, MD, PhD. Good info about foods, vitamins, stress, yoga, etc.
I am working on keeping my immune system as healthy as possible before chemo. I appreciate all the support and information I received from you on the site as I was deciding about chemo. Peace, Hope and Victory to all.
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Hi suz6, am happy to help in any way that I can. My appointments are next week for 2 second opinions and if they recommend the chemo too then so be it. Thank you for asking, I will let you know what I decide. I will check out that book you mentioned. I am also trying to be healthy and am finally doing some soft exercising, after my walk today managed to stretch a little bit without having to take a nap.
Saw you on the T/C string and am very happy you are on there. Some of the ladies on there have commented that keeping active or exercising when they can helped. Those women are wonderful. I am also on a January 2010 reconstruction string that might interest you if you want to have a peek.
-Patricia
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Had my first chemo treatment today (Onco score 46). Thank you Ladies for your support as I made this decision.
Limegreen - any decision on chemo yet?
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Hi ladies,
I would be interested in hearing what some of you decided to do about chemo. Still debating it myself, even though I'm supposed to start chemo the day after tomorrow (T/C). I, too, have a low Onco score of 17, but Grade 3 tumor, 2.5 cm. What to do, what to do? I just knew my Onco type would fall in the middle of intermediate, and once again, no obvious clear cut decision. Someone said they prayed for a low Onco score, got a 10, and then decided to do the chemo anyway. Yeah, that would be me, too. I guess there never is, and probably never will be, a clear cut answer. Anyway, the best to you all, ladies. I've never met such a wonderful group of people. Thank you all very much for your information and positive attitudes!
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Hi everyone! I have a grade 3 tumor, just under 3 cm., and if my Onco score comes back under 20 and my SN biopsy is clear (surgery on Wednesday), I will bypass chemo and do hormone therapy. I am also a Type 2 diabetic and am more frightened of long-term side effects of chemo (kidney and liver) than I am of the return of BC. I will also add that I am 60 and in good health otherwise. I've managed my diabetes very well since diagnosis 9 years ago. The thought of skyrocketing blood sugars due to steroids, chemo-induced neuropathy, and statistics that show older diabetics who do chemo have more troubles and end up hospitalized more frequently than younger patients is a deal-breaker for me. If the Onco score is high, I'll have to reconsider. My first onco (now fired) told me the chemo benefit was just 5% based on the AdjuventOnline tool. That's not enough to make it worthwhile.
Once you make a decision about this, you can't look back. Many of us who throw the book at BC the first time still have recurrences. You just can't know what's going to happen. Statistically, the odds are in your favor that you will not deal with it again. But then statistically for most of us, the odds were against us getting it in the first place. It's all really a crap shoot.
Make your informed decision then go live life to the fullest!
Michelle
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Hi ladies,
I am 42 and had double mastectomy beginning of May. I am ER/PR pos and Her2 neg (had to have FISH as first one was incoclusive). Finally, I got that result back last week and I am seeing onc.for the first time tomorrow. I am from Canada and onco type is not done unless You are in trial. So many decisions, I will see what are suggestions of my onc. tomorrow, but I am hopping to get into the trial to have oncotype testing as well.
Good luck to everybody
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Hi Nikola,
I hope things go well with your oncologist, and you get a lot of answers. I'm not sure I would have been offered the Oncotype if I wasn't being considered for a clinical trial, but they did one on me. I fell right in the middle of the middle (17) so it didn't narrow down my options very much. But, it always helps to have more information for something that - to me - is practically mysterious. After much research, I would say I still have more questions than answers. But these boards are just FULL of information, and if nothing else, give me some good questions to ask my doctor. Good luck with your appointment, and let us know how it goes!
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Hi LuvRVing!
I luv your name - I have always wanted to go RV'ing! I think if I was in your shoes, I wouldn't want to chance the chemo messing with the diabetes, either. I'm having some kind of bladder problem and I'm supposed to start chemo tomorrow. I've been freaking out about that causing a PAINFUL reaction, because it already hurts. I had a complete abdominal CT scan last Thursday, and my onco wants me to come see her before my chemo tomorrow to go over it and then go on to the chemo. Don't know what's up with that, but I'll find out soon. But I know what you mean about not wanting to mix chemo with an existing problem; it seems it would only exacerbate it. Hope your Onco comes out just right! And you are right - we just have to make our decision and then be done with it!
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Thanks, Heartandsoul! Did my pre-op stuff today, surgery tomorrow and then information to base decisions will follow. My pre-surgery MRI showed one suspicious node. However, I had a horrible biopsy and there is a possibility that it's just reacting to the hematomas. I'm going to hold that thought until I am forced to let it go.
I hope your bladder problem is nothing serious and you can proceed with your treatment plan. I'm sending you positive thoughts and good wishes!
Michelle
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Hi Michelle,
Hope you're asleep by now and all goes well tomorrow! It will be sooo good to get that part over with. The decision-making is the hardest part, and I'm sure they know that. Yes, definitely hold that thought! It sounds very likely to me. Oh, the bladder problem was nothing my onco was concerned about, but she did give me that stuff that soothes the lining of the bladder and makes your pee orange. But what she wanted to talk to me about was a spot on one of my adrenal glands, which she said is most likely benign and that we will wait until I'm through with chemo to do an MRI on it. Sounds good to me, because I'm getting tired of multi-tasking my health along with all the regular stuff! So, I did have my first chemo today, with the Cytoxan bladder-aggravating drug, but so far so good. In fact, it wasn't nearly as bad as my imagination was! Please let us know how everything goes when you get a chance. Take care!
Lynn
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MIchelle - I will be thinking of you today and sending healing {{{HUGS}}}} to you.
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Hi everyone! My BS is a magician - I was in surgery around 1:30, back to recovery at 3:00 and they woke me up at 4:00. About 4:30 they took me to a holding room where DH and DD were waiting. I ate some crackers and jello, drank a Diet 7UP and then we were "outta there" at 5:30. I feel terrific, although I took the pain pills as a precaution for tonight. There were no surprises, the SN pathology was clear so no nodes were removed. It's all that I could hope for, under the circumstances. The Mammosite placeholders are installed and are bleeding just a little, but they told me to expect that.
Nicola - I hope your onco visit went well and you were accepted into the clinical trial.
Lynn - wishing you a "side effect free" chemo journey and a happy bladder!
Barbara - thanks so much!
And thanks for your hugs, positive thoughts and prayers. Tonight I am going to sleep without BC. I am so relieved!
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Hey Michelle,
I can't wait to hear how the tests you are waiting on turn out. I pray that you get the answers you want, because all we want is some peace of mind. My decision to do the chemo was very difficult - right now, I feel like I just can't endure it - but I will. Just have to work very hard to minimize the impact it has on our everyday life issues, for now and in the future. I do NOT want pain forever, so I will try to exercise through this. I need to start yoga <must buy new DVD>, since I can learn some stretching and relaxation techniques. My hope is that how I take care of myself DURING the chemo will have positive long-term effects for all the continuous, nagging problems women have been reporting. And if all else fails, I'll just do like my mother - imbibe a little bourbon and coke during the day to help keep the pain at bay and the spirits up. I don't care - it seemed to work for her! The pain pills really make me feel bad, and they do say alcohol has some medicinal benefits - stress release, blood thinner, whatever. I just want to be happy and pain-free again one day.
Here's hoping for good news for you - soon!! P. S. My bladder is happy - ish, which is better than before the chemo, so okay, I'll take that.
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Hi everyone!
I got a call from the surgeon's office a little while ago. Great news! The pathology report indicated the tumor was only 1.7 cm rather than the 3 cm we thought. All nodes tested were clear, the margins were clean, and I am going to the surgeon's office at 4:00 to have the real Mammosite tube inserted. The Oncotype DX score is supposed to be ready tomorrow.
I am one happy camper at this moment!
Michelle
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Great news. Now for the Oncotype. You'll be fine, I just know it.
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Barbara - thanks so much! I go to the Radiation Oncologist at 9:00 tomorrow morning, so I can see the light at the end of the tunnel. And I am now a Stage 1 so things are looking so much better! Oncotype due tomorrow but I might not hear until Thursday. I have to reschedule my appt with the Med Onc which was also at 9:00 tomorrow. I'd rather wait until I have the Onco score and verification of the ER/PR status so it's just as well.
I might get a good night's sleep tonight!
Michelle
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