Class of 2009 - Sisters in the same time frame
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Thank You Elimar for that great explanation
I am anxiously awaiting my onc appt on Friday to go over my score. They have the info, and I tried to move up my appointment and he is double booked and can't get me in sooner. The nerve! I am very nervous about this either way. Maybe I have been doing too much internet reading, but the ladies who have just gone for the chemo despite an oncotype score make me wonder if I should do the same if my score comes back low or in the "grey" area. How do we know we are making the right choice, we all have heard of people who have had mets with chemo as well, right?Maybe I am thinking about it too much and need to pray more.
Carol-good luck to you in getting your score, please share with us what you find out. My prayers are with you, and all of you!
Hugs
Jen
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Congrats Carol, sorry I guess I didn't read on past the last post on the previous page!
I am happy for you!
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Elimar - a very helpful post I think.
Ladies - I think you need to be lookjing more at the Adjuventonline stats maybe. (remember - these are all just stats). What would you say Elimar?
A lady above is concerned about Arimidex. I have been on Femara, which is not dissimilar. It really isn't too bad and I would try if you can manage at all to approach matters with an open mind. NOT EVERYONE gets bad SEs with things. This isn't meant to be bossy but just encouraging.
Good luck all, and also - doing chemo is just that - not fun but doable.
Very best wishes in your search for the best answer for you -
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Hi Ladies!
Just got caught up on what you all have been up to! While reading some of the fears it occurred to me again about what a great website this is. How nice it is to have a spot to discuss your fears....and ask questions that only people here will understand. Not a soul thought any of my questions were dumb...someone always had experienced the same thing!
! am 57 and this was the very first time I have been "sick"...if you don't count the flu years ago! I have never had a broken bone or any surgery...just lucky I guess. Then out of the blue this breast cancer hits...and my world was turned upside down. I think I now have more doctors than I have had in my life!
Tumor was very small. 1 sentinel node showed 1 micro spot....axillary nodes came up clean. CT scan: clear. Whole body bone scan: clear.Oncotype score: 18..on the cusp. Like all of you others, I had to decide whether to go through chemo. There are a lot of factors to consider. My choice was not to do it...but I would have if it would have been beneficial. My med onc leaned towards no. My surgeon leaned towards no. My nephew, a gynecologic onco , had his breast partners look at my reports. They said no. My niece, a oncology RN said no. But, it was my decision to make. I am having rads and will be on Arimidex for 5 years. I will be seeing all these doctors every 3 months or so. I feel like I will be monitored well. If the cancer comes back....well, I will deal with it then. But, then again, the odds are that it will not come back. That is the way I am looking at it. After your decision is made...go with it...no regrets...look forward!
Hugs to you all,
Sue
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Me again...!
I just had #14 of 33 rad treatments today. Thus far, everything is going great! I am just a little pink. I get an occasional quick jabbing mild pain which they say is normal. Tx at 7:24 in the morning...then off to work I go! I do not seem to be any more tired than usual. Keeping my fingers crossed that the good going continues.
Per the recommendation of the doctors and staff at my facility, I am using only a simple cream with aloe in it. There are a lot of suggestions of this and that on these boards but I'm told to use just one lotion only and stick with it until if/when I should need something else. Then they will tell me what to use. So, I slather this cream on whenever I get a chance! It appears to be working. Bonus: my hands have never been softer!
Hugs,
Sue
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I was tenacious this morning and called my onc office to get my appointment moved up, and they got me in today at 1pm.
NO CHEMO!!! I am happy about this and feel very comfortable. My onco score was 16, I have a 10% recurrence rate and chemo would only bring that down to 8%. My onc offered me names and numbers of different docs to go get a 2nd opinion if I did not feel comfortable with this(can you believe that! Takes a good doc to do that!). But I think I am good. My husband and I are both happy with his recommendation. I will start rads in a couple weeks and be on Tamoxifin for 5 years. Like Susan said, they will be watching me closely.
Hugs to all
Jen
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jburke, good score! My genes should have studied harder.
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Hi everyone. I finally made another Oncologist appointment leaning toward chemo. Score 23.
I'm so worried that I waited so long for test results that radiation might not help now. I am so pissed at myself. I should've not been so stupid to think my path report was so great. So I decided to suck it up. Now I'm wondering if I should remove the breast. Oh well I cant wait to start the eating healthy stage. I'm getting sick of stress food.
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JEN: Great news! I know how you feel by dodging the chemo bullet!
We will be with you all the way as you start your rads! Ask us any questions! Everyone has some great hints! (Like... wear socks to the simulation..the room is chilly and you are nervous!)
Funthing: You are frustrated....wish I could give you a hug. I had/have days like that. You and you oncologist will map out the best program for you. You will be fine. The unknown is sooooo stressful. Once you have a plan, you will feel a bit more in control! At least you are ready to eat healthy again! I feel that I should have bought some stock in junk food companies! I am helping to keep them afloat in this economy!
Hugs to all!
Sue
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Thank you ladies for your positive and encouraging words. I know I still have a long road ahead of me, but I feel so much better knowing what lies ahead. Knowing is a powerful thing.
Funthing, try to stay positive, we are all here for you and wish you the best. Once you know what your plan is you will feel so much better. Like Sue said, it helps you feel a bit more in control.
Take care!
Hugs
Jen
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Hang in there Funthing. You'll figure out the right thing to do. We're right here with you, too.
Jen - GRRRRRREAT News! Hooray!
XO, Mary
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Congratulations, Jen! Great news on the oncotype. I know just how you feel because I got my oncotype this week, too, and dodged the chemo bullet. My number was 9! I was so prepared for it to be high because I was feeling jinxed to have been dx'ed with bc in the first place when I thought I was healthy.
Funthing, an oncotype 23 isn't the worst results you could have gotten, but it's high enough that a young woman like yourself has to do whatever you can to insure that you'll live a long life cancer free. Good luck to you in arriving at a treatment plan that's right for you.
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Hi Good Friends,
I'm back from visiting DD in Southern California and it was good to get away from the daily reminders of health situation for a few days. I did remember to take my Arimidex every AM though. We hiked in some dry barren foothills one day... quite a change from green Florida.
Just to get me back in the medical drudgery, my first radiation oncologist follow up appointment was this AM. It's been three months since my radiation tx. The doctor said my complaint that I still feel a little less strong and have less endurance is normal, might take 9-12 months to feel totally normal. He thinks I still show some swelling of the radiated breast, that's normal. I'm now scheduled for a mammogram in September. He said every 6 months for the next two years. I mentioned the involved armpit is tight still, in spite of stretches. He recommended swimming for exercise. And just to keep me from escaping the grips of the medical community he wants me to see a dermatologist about some moles on my back. I've had these moles all my adult life but all of a sudden I view them as a threat to me life! Ah, the power of suggestion
Happily I am able to get in to see one tomorrow so not too much suspense.I'm catching up on everyone's news. Good news for all of you who do not have to undergo chemo! Congrats. But honest to goodness, facing chemo is not as scary as not facing chemo for some of us. Doctors and oncotype said not for me, even though my score was 26. I have to keep reminding myself that 18% recurrence is the same as 82% non-recurrence.
Nice to catch up with everyone. I missed you guys!
Pam
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Welcome back, Pam! Glad you had a good time on your trip. We missed you, too!
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Hi guys! I need some help. I am freaking out because I had only a lumpectomy and have waited so long for Oncotype to come back. I am already worried about the little mutation coming back. What is the cut off for RADS and Chemo. Has anyone started RADS before Chemo? And has anyone started taking Tamoxifen. I was told RADS first Then Tamoxifen. But this was before Oncotype test. I know I'm just stressing but I figured I would ask. Appointment for another med Oncologist not until next week. Its been so much waiting. Its starting to mess with me a little.
Thanks Again for all your kind words and encouragement. I'm hoping I'll get to the point I'll have wisdom to share.It is wonderful and uplifting and gives me courage. Good Luck with your descions and treatments as well.
Thanks
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Hi everyone!
I am also a member of the Class of 2009 and a new to this thread. For me, deciding whether or not to do chemo was a tough choice. In the end, being grade 3 is what tipped me over the edge. I am doing TC x 4 and have had 2 treatments so far. Thankfully my side effects have been manageable and I can say I am half-way done! Then radiation and tamoxifen.
I found the decision making process on what type of surgery to have, and chemo vs. no chemo to be very stressful. But, once I made my decision, there was a sense of relief. I was then able to focus on taking care of myself and getting the job done. I hope that happens for those of you who are in the process of deciding what to do.
Funthing42 - there is an analysis that shows there is no compromise in survival or reoccurance rates for those who get chemo within 12 weeks of surgery. After 12 weeks there is drop-off. I hope this helps!
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Yes thanks. I am at twelve weeks now.
How about rads or Tamoxifen? My heart is pounding again gee whiz this is fun.Thanks Again
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Funthing42 - Sorry this info was upsetting, but I wouldn't stress too much. The results of the analysis are based on comparing two groups of women - those who started chemo 1 - 12 weeks after surgery versus those who started chemo 12 or more weeks after surgery. Keep in mind the second group includes women who started chemo way later than 12 weeks after surgery. I can't imagine starting a few weeks later could make a real difference. I hope you get the info you need to make the right decision for you. Hang in there!!
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Hi everyone!
Well, the last 2 days have been a whirlwind of contridiction! My onc called me up the day after our appointment to discuss my oncotype score again. At the hospital that he is affiliated with they have a Breast Cancer Conference every week where they present certain cases they are working on. This week I was on the discussion table for quite a while from what I heard. There were 4 medical oncs in the room along with my surgeon and the radiation onc I will be seeing. After presenting my case to everyone he asked "what score would this woman have to have for you to not give her chemo?" And the answer from them was 12, he told them my score was 16. 2 of them said to give me chemo and one said to give me the option. So, he called me back on Thursday evening to let me know what happened and that I am in such a grey area on the oncotype that I certainly can consider chemo as an option. But also, to seek out a 2nd opinion if I am not sure.
Needless to say I have been struggling with this for the past couple days. Next week I have to have a breast MRI, and I get the results the next day and then I also made an appointment with a different onc from a different hospital for a 2nd opinion. Hopefully after that I will know what to do.
My onc told me that with an oncotype score of 16 my reoccurence rate was 10% and with chemo that would only decrease by 2 or 3%. So, herein lies my struggle! Do I put myself through chemo for only a 2 or 3% chance of non-reoccurence or do I just do it and give it everything I got!
My onc told me if I did chemo I would do Cytoxan and Taxotere, the treatment would last 12 weeks. I would have 4 courses over the 12 weeks. All of you know what kind of a desicion I am facing, any feedback is much appreciated.
Hugs
Jen
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Good AM Jenn,
I am so sorry you are faced with an ongoing dilemma. It's good to be involved in the treatment plan but so hard when we do not have the knowledge and experience to make informed decisions. And there is the time pressure to make a decision.
It seems to me the protocol for doing chemo is expanding. Did you see the recent report about micromets in lymph nodes ... used to not consider it significant, now recommending chemo. Maybe as the chemotherapy becomes less toxic its use is more common.
So glad you are getting lots of input. We are here to support you.
Pam
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Hi AINM,
Thinking about you and wondering how things are going for you? And One-L? Are you back at work and living life and not spending all your time on this site? Hope everyone is feeling good.
Pam
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Hi Pam,
I've turned into a lurker on this thread cause I keep using up my posts on the motivation thread!!! I'm having a tough time trying to come to terms with this huge amount of weight I have to lose - I know - it's my own fault for overeating but I'm certainly sorry now, Oh well !!!! Glad you had a good break. Weather here is still wet, cold and windy!!
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Jen - the chemo choice is a b*tch. My onc said the side effects and risks of chemo, in his view, far outweighed it's usefulness to me - which he calculated at a 2% reduction in recurrance chance, similar to yours. I'm only 43 and I did not want to risk the potential longer-term SEs and consequences of chemo without it making a big impact on recurrance or long-term survival. I tried to think how I would feel if I didn't do chemo now, and in a year or so, had a recurrance in my other breast. And you know, I felt like I could live with that. I can accept that cancer's in my life now, and I'll be watched and monitored and I'll certainly be in there if I think ANYTHING'S wrong! Take the time to make your choice, it will be the right one. Hugs.
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Good morning ladies,
I found the following link on another thread a while ago....unfortunately can't remember where or when......darn chemo brain
! It might help those who are in that grey area make a decision on whether to do chemo or not.http://cancer.lifemath.net/breastcancer/outcome/index.php
Enjoy the rest of the weekend,
Sandy
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Jen...try this portion of the site to enter the outcome of your therapy options.
http://cancer.lifemath.net/breastcancer/therapy/index.php
I'm just lurking here. I'm a 2008.
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Hi beach,
I like that link. I plugged in my stats and the future looked very rosey. But it's all a gamble... I wasn't supposed to get breast cancer in the first place!
Pam
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Hello All thought I would share what my deciosn was. I was Dx in May, had a lumpectomy and was told by surgeon no nodes, radiation would do it an "easy" cancer, no big deal. Ok now we all know there is a big deal, but I went to Rads onc and then med onc, med onc did BRCA and Oncotype, BRCA Neg, Oncotype 21. Now deciosns had to be made. Talked to both Oncs, one thing the Rads Onc told me was though chemo and then rads is the norm I could take the rads and then if I was was still on the fence do chemo. I talked to my meds a few times and both of us agreed that the risk of chemo was greater than the results only a 2-3 % lower recurrence. He then said if I was his wife or daughter he woudl ask me to think about the Tailorx study which decided which arm I would go in, chemo, rads and tamox or rads and tamox, he explained the study is helping narrow down the middle group. I did decide to enter the trial but said if I was chosen for the chemo may back out, which he said was fine with him. I was chosen for the rads and tamox and am now done with the rads, vey glad too I burned, had fatiuge, arm pain , mushy brain but feel that it was all worth it am am healing nicely, ( I finished 8/26). The one thing on the study you begin tamox with rads, not the norm but I asked a lot and had no issues doing it this way. Hot flahes and night sweats increasing after 7 weeks but had them before so just more of them livable. Don't know if it helps but this is my story, it is so nice to see how others make decisions and I look at it this way, I am the one who has to live with the decisions so I should be able to take a littel time to do so.
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Hi Carollyn79,
Thanks for sharing your decision process with us. I am always second guessing not doing chemo and am glad to have wisdom from other women. No, there is no "easy" cancer. Just some are harder than others.
Pam
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Hello everyone, I have been reading all the posts, but not doing much posting myself. I get home everyday and about the first thing I do is sign in and read.
I went back to work last Monday. I feel really good and did not get fatigued. I am having trouble sleeping. I am a right sided sleeper and I just can't seem to get comfortable on my left side. I have slept on the sofa every night since my surgery.
I go to the rad onc 9/03 for my consultation. I have a cruse scheduled for 9/20, so I hope I can wait until after that to start my radiation.
I do not have a med onc yet. Do you think that is unusual? I know I will have to see one at some point. I am thinking that the rad onc will be the one that recommends one to me. I still haven't gotten all of my path report. I know that I have no node involvement, it was 8mm, I have IDC with some DCIS. My rad onc will probably have all the DNA reports, if not I will see my surgeon again on Tuesday, after Labor Day. I am ready to find out everything I can about this bc.
Juannelle
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Thank you everyone for your stories and input. I will take a look at those links and see what happens when I plug in my numbers. I am doc appointment free today, tomorrow starts my marathon of 5 appointments this week. I am hopeful that after this week I can make a clear decision on whether chemo will be in my future.
Hugs
Jen
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