CALLING ALL STAGE I SISTERS
Comments
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Char - thanks for that info. Wow, that's quite a difference in the definition of intermediate. I'm waiting on my oncotype score.
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Yes, that is quite a change and I definitely used that information in my decision...
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Sending big hugs to everyone trying to make the decision to have chemo or not. I thought that I would have to do chemo again when I was first dx from what my breast surgeon told me because of the size of my tumor, but the Med Onc did not do Onco type and he went by the size of the tumor after the breast surgeon did my final surgery. He did not go by size of tumor all together pre-biopsy and post surgery which made it over 2.0 cm and therefore did not recommend chemo. To say the least I was relieved, having completed 8 rounds of chemo years ago due to Hodgkins Disease and I had all the terrible memories of nausea and vomiting that went with it. I recently found out that the gift of chemo has left me with a damaged heart at 46 yrs old, but apparently has been that way for a while and that is why my legs swell so badly. I found this out a few months a go on an Echocardiogram I had done... Cancer is the gift (NOT) that keeps on giving!!!! Cancer SUCKS!!!!!!!
Renee
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mimi - thank goodness you could get away without chemo!
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anniealso ~ Thank you for the positive words & strength. I love your idea of going shopping & turning off the cell phone. Actually, I am going shopping the next day with a very dear, long-time friend of mine (to lunch & shopping before & after - probably to Target, also!
) I've never found out the same day; last year was the first time I found out the very next day, but the mamm was at 8:30 a.m. & this time it's at 1 p.m. I specifically asked the scanner tech to send out my "letter" as soon as she could (she did send it that same afternoon) bec I'd had bc & it drove me nuts to wait. I also had called my onc's nurse to have her call me as soon as the office got the results (or as soon as she could) & she called the next morning. They do not let you wait for the results at the hosital, ever. For my post surgery 3-month mamm , I waited 6 days & got a letter in the mail! Ugh!! I was a nervous wreck. 
fighter_34 ~ You should be very proud of yourself for your positive, healthy lifestyle choices! You inspire me because I have gotten off track lately.
Dee & onestep ~ Hello! Nice to see you both again!
Julie & Janetinvirginia ~ I am keeping good thoughts for each of you for low oncotype DX scores. Please keep us posted, okay?
Welcome Theresa, char2010 & mellysu! You will find much support & love here, with plenty of hugs & laughter on the side. We have to laugh or go crazy sometimes!!
grannyD ~ I am sooooo happy for the news that your GS is coming home tomorrow. He will recover with lots of love surrounding him. (((gentle hugs to you both)))
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Sheila ~ My mamm is next Wed.
My DD#2 was a bit jumpy when I called her yesterday because she has had several sad phone calls lately: A school friend was on her moped in FL & was hit from behind & died; a lady she used to work with passed away from stage lV ovarian cancer; and she just found out her Aunt in-law has colon cancer. When she answered the phone she said, "Please don't give me any bad news." I certainly hope I can call her with good news regarding my mamm...... she will be in New Mexico at her Grandfather in-laws 90th birthday party. Maybe I won't call her either way so she won't have to worry if the phone call is from me. But, then I couldn't let her wonder.
Hi Renee, dear sister/friend! ♥
Hugs to you both!
♥ ♥
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{{{VAL}}}} I wish all mammo places would give results right then and there just like they do at my St Anthony's Breast Center. The tech takes the film back to the radiologist who came into the room and gave me a big hug. Then I started crying and jumping up and down! They know how anxious we are.
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Regarding the oncotype test - intermediate scores are 11-25?????? Yikes! My score was 11 and I was told that was low so no chemo for me. Now they are saying that it is intermediate
I did not do chemo so when I read something like this it makes me a little nervous. I know there's nothing I can do about it now but......0 -
don23, That is for the Tailor X trials, hopefully they will know more when it's over. My onc is still going with the old standard. There is so much they really don't know.
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Grannydukes, 2 hours your grandson layed on the highway? Your are right god was looking over him to be safe that long.
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For me, this explains why my onc called and moved our appointment up a week and is now saying that we should seriously consider chemo. He was pretty neutral before. I'm right at the new standard. I am going to check the chemo strands but any recommendations for combinations to consider or questions about SE to ask about the chemo would be helpful. I just don't want to take any chances...I don't want to seriously damage my body, but I also DO NOT want this back. I know me - and I would beat myself up if I chose not to and it came back.
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don23, I believe the intermediate score for Oncotype is still between 18-32. The 11-26 group was something they had in the Tailor-RX clinical trial, being very conservative in the manner they did the testing.
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don23, the Tailor-RX trial is extremely conservative. I wasn't able to be part of it because my tumor is too small, and I was grade 1 even though my Onc. score was 24.
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Thanks for the reassurances ladies! I'm glad that news is only in a study right now. At the time of my decision to not do chemo (I did have the option if I wanted to) to never look back. Sometimes that is hard to do but I still feel in my gut that it was the right choice. I hope I'm not proven wrong!
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I hope I'm not disturbing anyone by changing the topic from chemo, but I don't know where else to start this conversation:
First time on this board. I found you through google and am so happy I did - a wealth of information here. I was just diagnosed with IDC last week - 7mm Stage 1, Grade 1. I was told by the diagnosing breast surgeon that I would need a lumpectomy and SNB, radiation for 5 weeks and tamoxifen for 5 years. I am 48 - perimenopausal. Shock of the century, and I am incredibly positive (or in denial) because of the research I've done with my situation. I am seeing two more surgeons, both in NYC:Alisan Goldfarb out of Mt. SinaiAlexandra Heerdt out of MSKAny feedback would be appreciated - didn't see so much on the board about them. I also am so stressed about what each will say, the differences in opinion, if any. I am also terrified about the lumpectomy and SNB - mostly for the results.I just don't know what to make of this whole thing - I still believe I am in shock with the diagnosis and that it is not a huge deal with what I have. Scared now.
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oakley, I'm so sorry you have to join this group, but that being said this is a great group to be a part of. If you look at my stats they are similar, except mine was ILC. I had a lumpectomy with a SNB. I was just as scared as you, but it really wasn't bad at all. I did internal rads which was 5 days 2 times a day. It was not bad at all. Is your DR. doing the Oncotype DX test? If not I would ask about it. It tests the tumor, and gives lots of info about how much chemo might help.
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Welcome oakley. The thread might get little slower during the day.
Im so glad you joined us, well you know what I mean.
I cant be much help with the DR's. I was treated in Westchester County Sound Shore hospital.
Hugs
Sheila
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oakley, My Dx was pretty much the same, except I had Grade 2. It still was not fast growing tho'. I would not expect that the surgeons differ that much. If you have no node involvement and the lump is removed with clear margins, then the treatment should be straightforward with what they have already told you. After your surgery, you may want to have the Oncotype testing that has we had been mentioning. It is for early stage, node negative women (some exceptions.) A slice of your tumor is sent for gene testing and from that they can tell if you would benefit from chemo and how much of a benefit it would be to you. When a tumor is Grade 1, ER+/PR+, many women do have low Onco scores and therefore are o.k. with just a hormonal drug (like Tamox.) but occasionally you get a surprise and the score is higher. I did ask for the test because I did not want to overlook that possibility.
Good Luck.
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A Big Hug To All My Sisters
♥
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Oakley: I am new to this also. For me, feeling a strong connection to the medical team really helped me. I developed trust in them and was open and honest about how I was feeling and what I needed in order to make the best decisions for me. When we talked about the surgery, my doctors agreed to call me with results as soon as they came in. I don't know if that's unusual or not, but I didn't want to wait for an appointment to get the results. If that's something you want, you might want to check with them about this.
For me, I was most worried about the lymph nodes...but in the end I figured there's nothing I could do to change the result - I would just continue to make rational decisions based upon the next set of facts. That has helped me.
Another thing that I wish someone had advised...Post surgery I was told to wear a sports bra 24/7. That was not comfortable for me for the first couple of weeks, especially due to the SNB incision. My doctor gave me a breast binder that helped but it was only one so I did order another on-line. Maybe others can comment on whether these helped, their hospitals had them or where they obtained them. I just wish someone would have suggested I order one in advance!
Good luck and stay positive!
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Oakley - Like you and probably many, many others, I was very afraid. I was actually very pleasantly surprised with the lumpectomy experience. I took one pain killer that night at home and was able to move to tylenol or advil from that point on. I was cooking and part of life. I struggled with fear that someone would bump into me more than anything so either blocked with a shopping cart whether I needed one or not or had my husband in front. Nothing about the experience for me was difficult except all the anxiety I managed to have prior to the appt. I did get fitted for something before surgery however the incisions were not compatible with what I purchased. I wore a no-wire sports bra and was just fine but it does depend on where your incisions are and you can't really know that until after. I was fortunate to have clean margins and nothing showing in the SNB so I had no drains. I was not expecting chemo with a small, grade 1, stage 2 but the docs were surprised with my oncotype. My one regret is not asking that the oncotype be ordered immediately after surgery as that takes another two weeks. I have started chemo, damn it, but I know with my score, it was the right thing to do and I am so jealous and happy for those with lower scores.
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I do not know how to even thank you all so much - all of your responses are making me feel much more comfortable. My feeling of being overwhelmed at this juncture has passed knowing that I narrowed down my doctors for 2nd opinions. Of course 100 names were thrown at me - everyone trying to be so helpful. One step at a time is essentially the way to go - I'm just not good at that. I want to know everything right now. I suppose knowing what I have at this point is not necessarily what I will have after the lumpectomy, but hopefully it is. I will ask about the oncotype test. I am staying extremely positive! Thanks to all of you. 0
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oakley, just a heads up the rules are 5 posts in a 24 hour period when you first join breastcancer.org. You can PM anyone you want as much as you want.
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oakley,
while I was treated at a different hospital in NY, I have only heard wonderful things about Dr. Heerdt from many sources. I was a little wary about having my follow up at MSK. But a consult certainly wouldn't hurt. I've been through this twice, and have gotten as many as three surgical opinions each time. I've also learned that if you love a particular surgeon at one hospital, it does not mean you need to be treated by an oncologist there also. Especially in NYC, there are many good choices.
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I found the sports bra to be very uncomfortable after my lumpectomy. It hit right where my snb incension was so my regular bra was way more comfortable for me. I am going for a PET scan tomorrow and get the results on Monday when I see my Dr. I don't expect anything bad but I hate waiting over the weekend. If all goes well I will get my rads markup done on Tuesday. I never realized the restricted diet you have to be on before a PET scan. It is a good thing I like green vegetables.
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Val my sister/friend Happy Celebration on your second year.
(((HUGS)))
(((♥♥)))
Later we have some desserts or anything your heart desires
Sheila
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granny...Thinking of you sister
Hugs♥
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Woohoo, Val! Congrats on the two years& here's to many more!
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Val
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Hi all--
Granny, just catching up and was horrified to read about your GS. But, I'm glad the drs have patched him back together. I'm sure he'll have a long road ahead of him. Will be praying God heals him. One day at a time. {{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}
Newbies, sorry for your recent DX's. This is a hateful disease, but you've come to the right place.
VAL--GOOD NEWS!!
Have a great night. Date night with DH!
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