MIDDLE-AGED WOMEN 40-60ish
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It's lips
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Well, actually a whole mouth stretched wide, but a lovely shade of lipstick.
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Elimar, why doesn't my cleaning person look likeyour duster boy?
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Gee, Momine, if you are not hiring ones that look like that, you are violating the Un-Glamorous Laborers In-Eligibility Statute that is the standard we hold to on this thread. We forgive you. You have suffered enough.
I think Meece is onto something with the Mystery Pic, but I will guess Life Saver just in case.
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Elimar- Have you ever heard of PAM50? I came acrossed it while looking for something else. It is very interesting and might give you and Sherry a little more peace of mind about your decisions. I am going to attach the 2 links.
http://theoncologist.alphamedpress.org/content/early/2012/03/14/theoncologist.2012-0007.abstract
http://oncozine.com/profiles/blogs/oncotype-dx-and-pam50-breast
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I don't know if the PAM50 sheds more light for Oncotype intermediates or not. I already know I am Luminal A, which does have good outcomes quite often. If I were to take the PAM50, I would have a 50% (as per article) to be "reclessified" into the low group. However, what does that mean when the next paragraph says:
“However, intermediate risk groups by one assay often include cases with discordant risk prediction by the other method. When discordant risk results are obtained it is currently unknown which assay will predict outcome more accurately.”
So one test may be more accurate for me than the other BUT WHICH ONE? So, back to being intermediate, with a chance I might be lower. Maybe.
Well, it's a start, and with more studies they can fine tune it to be more predictive for intermediates. Thanks for sharing the article.
You know, 18 is just over the intermediate border for OncotypeDx, but the way I looked at it was that 17 would have been the same for me OR what if they drew the "line" between 18 & 19? When my doc said I would only benefit by about 2%-3% and he doesn't usually recommend the risks of chemo unless the patient has a 5% benefit to do it. That's arbitrary too, but it seemed reasonable. I like reasonable.
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Elimar, I have no idea what the MO will say to me on Monday. He did say the cancer in my nodes is the same that was in my breast, so I can't see how the chemo would benefit me. One surgeon told me it doesn't matter what the Oncotype said, I beg to differ with him. I just wish there were more answers. I am going to ask if I qualify for the vaccine. I am not sure how that one works.
I agree with you that reasonable is good and if he is going to suggest chemo I want to know it makes sense and not just a shot in the dark. I figure if my chemo has no benefit why would I want to lower my immune system and the cancer then will be stronger than me. If my score had been 25 or higher I would have thought chemo then would be reasonable, but not with a 6. I was more upset yesterday with the news of the score than all the other bad news I have received lately. I am not sure why, but I actually felt sick to my stomach. It's all confusing.
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Dianarose My onco score was a 23 with a 14% recurrence rate. Chemo would have only benefited me 3% and my MO did not feel it was worth it unless it would benefit me at least 5%. I had two opinions and both said the same. However my MO did say it tumor had been 2cm or if my KI67 had been over 10% he would have recommended it no matter what the onco score was. I was a little leery of not doing it with such a high score but I am now doing Zometa every 6 months for three years which is suppose to lower recurrence rate alot for pre menopausal early state BC. MO has been following the study and when it was present in Dec he felt I was a great candidate. I have done one infusion and no SE's
Lisamarie so glad your home but hate that you had so many problems with the morphine. I think I stayed in a morphine coma while I was in the hospital. but that is OK sure beets feeling the pain.
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Sherry- I don't see anything about my Ki67 on my path reports or the Onco score pages. Is this something I have to request they do?
I think my largest tumor was 1.5 cm. Most of the cancer was very small and microscopic which doesn't help in my decision making process.
Have you changed your diet at all knowing that you are ER and PR positive? I found this site that lists foods that are high in estrogen and foods that block estrogen. I will have to research it further, but I posted it for you to check out. I don't trust everything I read on the internet. .http://dogtorj.tripod.com/id45.html
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diana the KI67 should be on your path report. You will not find it on the oncoscore. And yes I have lost 25 pounds with diet and exercise. I eat alot less meat and more veges and whole grains. When I was diag I asked all my Dr's what I could do to help not get cancer again and they all said the most important thngs was exercise and the next was good nutrition. I have also tried to go cleaner with all my personal products. As I have had to replace things I have gone with paraben and sulfate free products. I'll check out the website I am always in to reading new things.
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Another quick pitstop to say HI and hope all are having a good weekend, side effects and fears aside. I love that our thread continues to get new members, but it makes it hard to catch up when you only have time on weekends. I miss my regular catching up and knowing what's going on with everyone but reading five pages in a sitting doesn't work well for me, so I have to settle for some quick scanning of a page or two. Always know that I think of my good buddies often and love reading the posts I can.
Eli, your topper this week (swan) goes well with my avi!
Newbies...I hope your journey is a good one and that you get all the info you need, whether from us or from bc.org in general.
Love and hugs sistahs.
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Have an appointment with my MO this morning so I got up early to go over things and write down all my questions. I pulled out my last path report that I was given and was told it was the report from the mastectomy. I had put it away with all the other crap because it was ugly and I didn't want to deal with it. Well, I noticed some things that were just not right. It said the specimen was collected on 3/15 which was my lumpectomy date. It also said the specimen was from lumpectomy. The date completed said 4/15 (mastectomy was 4/11). I thought is was weird that the sizes, grades, etc... were exactly like the lumpectomy report, so it is one of two things. Either they gave me the wrong report and I got an ammendend lumpectomy path report, or they sent out the tissue from my lumpectomy and not the mastectomy. Either way I am really upset this morning. When I asked the BS for a copy of the last path report she is the one who handed it to the office help to make a copy. Now I wish I hadn't shoved it in the desk drawer and found this mistake earlier.
I want off this roller coaster !!!!!!!!!!!!!!!!!!
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Dianarose That must be really frustrating. This whole rollercoaster thing is bad enough with out having screwed up paperwork. I hope you get it squared away today and that it turns out everything is much better than you think
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I am almost certain I have the wrong report because they told me there was a total of 17 positive nodes and all I can come up with is 4. Also she said there was a brief paragraph about the left side having no cancer and I can't find that either. I am just tired of mistakes. There have been way too many with me. You have to be on top of everything and read everything a thousand times. It's hard when you are already an emotional basket case.
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Dianarose - I hope that you are able to get everything straightened out today. You have enough to worry about. Good luck - keep us posted.
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I am stressed enough not knowing what the plan is going to be with an Oncotype score of 6. I know I have a lot of postive nodes, but I just can't see how chemo is going to make a difference when it's the same cancer. I am getting a dam headache.
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It is so frustrating when you read your medical records and there are mistakes. At least you can question it today. Offhand I can rememeber scanning my Rad Oncs reports and seeing where he commented that my port site looked good. I NEVER had a port! Whose chest was he looking at??? I've also had reports which said I had an ultrasound on my right breast when it was a diagnostic mammo on my left one. It appears that we have to be our own proof reader on our medical records.
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Meece- it is dam scary. The first surgeon I went to had me scheduled for a left breast lumpectomy in January. It was the right breast and he had done a lumpectomy on the left breast over 7 yrs ago. I found a new surgeon.
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So far none of the errors I have found have been that dangerous, but any mistake in your medical records is bad because it can affect future tx.
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Dianarose-thats crazy about the surgeon scheduling you for the left breast again. Glad you found a new surgeon. Kind of reminds me of years ago when my obgyn did my hysterectomy . About two years later when I went in for a yearly exam he ask me " when is the last time you had your period." I told him "I haven't had one since you took out my uterus!" He seemed a little embarrassed lol. But let us know what happens today with your reports. We'll be thinking about you.
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Dianarose - I haven't been on here a lot for a WHILE, but I used to be one of the regulars. I had ILC with an oncotype of 11 - 2 sentinel nodes were clean, and I had a 2.1 cm tumor. Highly hormone receptor positive. Chemo wasn't offered by the medical oncologist I ended up with (she is part of a team with the breast surgeon and radiation oncologist - they're in a "Breast Center") because I'd allegedly get only a 1 - 2% benefit from it. BUT I originally saw an oncologist who'd said that he was completely going to make the chemo decision for me based on SIZE. There are so many different approaches. In addition, there's the matter of your cancer being ILC, which is the neglected stepchild of the breast cancer world. The tendency is to treat it just like IDC, but from the little available on the subject, it has some differences in how it grows and behaves...
I hope you got some good answers from the oncologist! Your pathology reports sound very confusing and inconsistent. It is interesting to me that your Oncotype came back as a 6 and yet it was allegedly in all of the nodes they tested. It STILL may not mean that chemo would help you: one of the anti-hormonals may be the best thing if it's typically highly hormonal ILC... But some women with ILC get a good, visible response from chemo. Have you been over to the ILC forum?
Keeping my fingers crossed that you get good answers and a plan.
Coleen
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Hey Colleen
Nice to see you again. Hope all is well.
Hugs,
Trish
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Hi Coleen!! Glad to see you pop back in.
Dianarose--how did your appt go today? Sure hope you got the answers you needed.
Saw my dentist today and my hygenist was so impressed about how good my teeth and gums were( except the bare tooth that i have "sawed" along the gum line over the years. Nice to know things are getting back to a semblance of normal. Yeah!! For healthy teeth!!!
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Had my appointment with the MO today and it really sucked. They had given me the wrong path report and he gave me the right one today. Now I went from stage IIIa to IIIc. He basically said he has to offer me chemo but based on the onco score the only thing he would probably be giving me is side effects. He also said that based on the nodes I probably have some undetected mets somewhere. I felt like he was just writing me off. So based on what he said it would be radiation, ovaries out, hormonals, and he won't write the script for Metformin, but instead wants to put me in the trial. I don't want a GD placibo based on my path report. I think I am going to get a refferal to Dana Farber. He is going to see if I can get in the trial for the BC Vaccine, but said I might not qualify because I didn't have clean margins. It has not been a good day at all. I am so depressed.
I am having a hard time accepting all of this. What really sucks is I feel great and he basically made me feel like he was giving me a death sentense. How are we supposed to stay so positive when the doctors aren't.
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Hey, Dianarose, I had been waiting all day to hear from you, and now feel at a loss to comment on the general suckiness of the whole situation. I think you could benefit from hearing a second opinion from Farber. It may not change a thing, but maybe it will add to your confidence level if you do skip the chemo.
The 17/17 nodes is serious, and it would be worrisome to anybody. Moving to stage IIIc does sound worse, but remember it is a guidline for treatments and I don't even think it changes yours at all. Such a shame that your Dx had all the extra weirdness associated with it, but we are still with you and trying to help make sense of it all too.
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Elimar- he also said that before the Oncotype test everyones treatments were based on stage. Now that they have another tool they don't know what to do for those who get little or no benefit from chemo. So many women have had and continue to go through chemo for not. It is sad. I just wish they had something in it's place. The nodes are really a double edge sword. With clear nodes you feel safer that you don't have mets. With positive nodes you are scared that they didn't stop there and at the same time you are glad that your nodes did their job. It's all a mind game.
I am going to call my reg doc and get a referral to Dana Farber. One thing that made me nervous with this MO is that he is head of the clinical trials for the hospital and I am the one who told him about the trial with the vaccine. He had to leave the room and go look it up. One of the other trials he showed me I didn't even qualify for and he was telling me about different drug options and then said that most of them are only available in Austrailia, well Why tell me about them.
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Diana, so sorry about your sucky doc appointment. That is really terrible that they gave you the wrong path report, and the MO's attitude stinks. I definitely think you should get a second opinion.
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Diana I do hope you get a 2nd opinion.
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So sorry for the bad day, Dianarose. Go for that second opinion!
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I love ya dianarose ... on my way to PS today hoping my drains come out . I am still in so much pain cannot take it anymore
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