2010 Sisters
Comments
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Thinking of you all tonight and keeping you in my prayers...
Sleep well and have comforting dreams,
Tori
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Is chemo really automatic with HER 2+? I never knew that.
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Granny,
Yep... It's very aggressive, but very responsive to chemo. At least it's one less decision we have to agonize over!
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Lady Madonna.
the first dr.said her2+ dr #3 never mentioned it and its not on my path report.neither did the onc say anything about it.now i am wondering if i have it.if you didnt post that i would not have known.Now my dr is on vacation but i will call the onc,tomorrow...thanks.
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I just found my notes from dr#1 he told me i was ERpositive.no chemo or rads.does that sound right?
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If you were HER2+, nope.
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Amy Jo~~
I just wanted to let you know that we are all here for you!!! I'm sending oodles of prayers and healing vibes your way!!!
(((((BIG HUGS)))))))
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Thanks Designermom!
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Granny: ER or PR positive is different from HER2 positive. It wasn't on my pathology report; that test was done at my initial biopsy. You may be ER+ and be able to be treated with just Tamoxifen. But HER2 is different, treated with chemo,hercepin. Just ask your doctor to explain it all.
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yes girls its er+ but i will be going on aromasin.now is that treatment or prevention.when i was on the arimedin the nurse told me it was prevention.that was dr#1.they told me everything all wrong.i think i am stage 2 now.does that mean i dont belong here anymore...damn.i wanna stay here.its nice and cozy.stage 2 puts me in a different mindset.one day ill get this entire thing straight.
thanks again to all my sistas for the quick response
i am too self involved these past few weeks.
im sending all of my sistas a big prayer right now.DEAR GOD PLEASE CURE US RIGHT NOW
hugggggggggggs
K
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I THOUGHT I WAS ON THE STAGE ONE THREAD...LOL...THE BIG C IS FREEZING MY BRAIN
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Okey dokey Granny. My understanding is if there are any positive nodes, that bumps you up to Stage 2. And there isn't an LCIS, it's DCIS. So I think your diagnosis is DCIS, 1cm, 1/1, ER+,HER2+, Stage IIA (I'm stage IIA because I had a small tumor, but one positive node. They said without that one freaking node, I'd be stage I!))
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Diagnosed 8/11/10. So far I know I have IDC 2.2cm. ER+/PR- HER2-. Grade 1. Because of tumor size that puts me in stage 2.
Having a lumpectomy on Thursday (8/26) and sentinel biopsy/mapping.
So far have been told radiation is a yes. Chemo depends on the lymph nodes.
Read that Chemo is recommended for all BC tumors 2cm and greater. BS says that they are rethinking that and not recommending Chemo for BC tumors 2cm and greater.
Sometimes I just don't know what to think. I research on my own...but who knows if the info I am getting is old. For all I know articles written 6 months ago could now be old.
I don't want to NOT get treatment such as chemo because now they think it isn't necessary for tumors 2cm and larger. In my mind what if studies show differently a year from now and they should have been giving Chemo to all with tumors 2cm and larger. How sure are they about all of this?
BS says she didn't see enlarged lymph nodes on Sono or MRI and that is a good sign. But there could still be microscopic cells in the lymph nodes.
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grannydukes- No matter what, you stay right here with your other 2010 sisters! As you say you are ER+ it makes sense that you will go on hormone treatment to prevent recurrence. The HER2 is a different thing. If you were HER2- I could see where your Onc might say no chemo. There is new thinking that chemo is not automatic even with a positive node. However, you need to make sure about your HER2 status. Some of the other HER2+ ladies will know more than I do, but I do think it indicates more treatment. Are you being treated in a hospital? I'm wondering if there are any volunteer breast cancer survivors in your area who can help you clarify all these things.
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Gee wiz.i thought i had it straight.the first surgery the lymph node was positive.dr#1 did not check the other nodes.I have more nodes that have to be removed on sept20th.they will do another left node disection and remove whatever nodes dr#1 did not take out.this thing gets bigger and bigger day by day..im really trying to accept this thing.I went through the denial,anger,resentment and now im trying the acceptance.
thank you my sistas for being there 24/7.I pray for every one of you every day
God bless.We are gonna win this battle.
K
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LadyinBama- Like you because one out of four nodes was positive I was bumped from stage 1 to stage 2. I was told anytime you have node involvement you are no longer stage 1.
I was also told after my biopsy that my HER2 pathology came back equivocal - neither negative or positive. My score was more on the positive side but still in the gray area. My oncologist recommended I get treated with Herceptin (can only be given with chemo) because I was on the higher side of the middle. Last week she called and said the pathology from the lumpectomy came back and the two tests they did for HER2 came back totally on the negative side! She confirmed that with pathology today. This did change my chemo plan. Took me from 20 weeks to 16 weeks - a total of eight treatments.
You all seem so much more confident and educated in all of this. I don't even know what the K1 is!
Still having a tough time with chemo. I'm not even sure I will go through with it.
You are all in my thoughts and prayers-would really be lost without you.
Try to be tough, try to stay positive and if you have a crappy day so what!
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BYW I am bein treated in the Jacqueline Wiletz Breast center in Long Branch NJ.All my drs belong to this hospital Monmouth County/St.Barnabis.
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DesignerMom- Do you have any more info on not needing chemo with one positive node? I would really like to look into even though my doctor said she highly recommends chemo in my case.
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Hi ladies!!
Gosh I'm just tryin' to catch up on all the posts over the weekend. We had my 13-year-old DD's b'day celebration on Saturday and I was pooped, so not on the boards at all over the weekend.
Anyhoo - had my bone scan today - NEGATIVE! Port goes in on Wednesday; Chemo starts 9/1.
To all our new friends - welcome, and so sad we had to meet this way - but the girls here are THE BEST! I feel so far behind I need to make a list 'cuz I'm forgettin' who's who . . . and I don't even have chemo brain yet!
Will catch up more later. Gotta feed the kidlins.
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Granny and LadyinBama,
I have to correct you Lady... there is definitely an LCIS...lobular carcinoma in situ.
I think Granny is confused enough without throwing this out there!!
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Mrs. Nice,
Congratulations on your clear bone scan!!! That's fantastic news!!!
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jag and travelgal- I'll try to find the articles about node positive not meaning automatic chemo. Both my BS and my Onc said that was the new thinking (I think with 3 or fewer positive nodes). I would highly recommend asking your Onc about the Oncotype DX test. You can also google and go directly to their site. It tests your cancer for 21 genes and scores what your chances of recurrence are. From what I understand it is the best way to decide if chemo will be beneficial for your exact cancer. They can still order it because they are required to keep your tisue "on file". Having said this, I scored in the "low" range and still elected to do a milder form of chemo. I just couldn't be comfortable not doing it with one positive node. My Onc, who is more conservative agreed.0
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Hi Ladies,
I just found this thread (but I've posted on other threads). I was first diagnosed on 6/29/2010. Had lumpectomy on 7/28 and started Tamoxifen on 8/11. Still awaiting for my Oncotype DX result, called Genomic and they said they should have it by Thursday or Friday (I'm anxiously waiting)!! I learned a lot from the posts on this topic alone, especially about the ki-67 = 49% (which is quite high), Onc. didn't even explain this number to me. If notchemo, then RAD in September.
Inthepink49 (Vickie), I'm with you on this one. To be honest with you, I'm praying for a low score because I do not want Chemo. After reading my MRI report again (prior to writing this),they've found multiple nodules of mixed enhancements scattered through out my Right breast, but majority of these lesions have benign enhancement. I will trust my Onc. if he said "No to Chemo", because 1st ~ the test measures the activity of 21 different genes, 16 of which relate to both benefit from chemo and the chance of cancer coming back. It gives your doctor a better understanding of how your tumor behaves and helps determine which treatment to use. Go to : www.genomichealth.com or www.oncotypedx.com. They have sent me a booklet and it is very informative.
I've learned a lot from BCO and there's so much siterly love here. I just want to give a gentle hug to you all !
Paula, Las Vegas
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Hi Granny, I too had the sentinel node biopsy with just lidocaine, it was done at the same time as my tumor biopsies,the day following my mamo, under ultrasound the BS knew what she was looking at so she went ahead and did them all and placed the clip at the same time. It was pretty rigorous and I did feel it, but its done. I am in a study that required another SN, this one was done with the port placement so I got lucky and was out for that one! Is it routine to be out for the SN? I wish I knew that then, I was scared to death and alone had no idea what to expect...but maybe it was better that way because I held myself together better than I would have if someone I loved was with me. This is one tough road we are on, but checking in with the sisters is helping so much. My heart is full, I hope you are having a "good" day. Kaz
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I am absolutely amazed at the differences in Canadian vs American breast cancer "routine" treatment. I have never heard of anyone having to have a sentinel node biopsy without being put under for it. I believe a lot of these "treatment" and routine regimes for this type of cancer or that type of cancer border on barbaric as it is. To put someone through something like that while awake and merely "frozen" in spots is inhumane. As if we have not had enough done to our poor bodies already! We (in Canada) may have incredibly long wait periods in some of our centres, however, I think we are being treated with dignity, respect and empathy for the most part. Sending a great big gentle hug to all of you!
take good care and just breathe. . .
Teklya
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I also have not heard (until reading about it here) of someone having the biopsy without being put under. I had a snb done during my lumpectomy. The nodes were immediately looked at and they found cancer in them, so the did an axillary node dissection (and), while I was still under. When I woke up with a drain I immediately knew they found cancer in the nodes, because with just a snb I wouldn't have had to have a drain.
Mrs Nice--> congrats from me too on the clear scans! It's always such a relief!! I hope chemo goes well for you. What chemo are you doing? (sorry if you've already said it previously and I missed it!) I finished 4 rounds of ac, and started Taxol yesterday. AC was tough, but I'm hoping Taxol will be easier--so far so good!
Jag-->sorry you are having a tough time with chemo. Make sure you are letting your onc know about your se's. They can often help.
take care ladies!
Tina
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Hello 2010 Sistas- Welcome to the newbies (I'm also a newbie here). Lots of wonderful ladies here - your in the right place.
Mrs.Nice - Congrats on your clear bone scan. You found out the results the same day? I go for one on Mon. Aug. 30. Injection at 11:15 (does it hurt? - hope not like the dye injection for the SNB- ouch) Then scan at 2:30. Was wondering how long it would take to know something.
KazmTaz - I was told by my BS even though I was awake (froze) for my Lumpectomy (which I'd NEVER let them do again- I felt lots- turned out it was much larger and deeper than the pics showed) that the SNB was unable to be done without being put out. I am amazed at times
at the differences you hear of reading these posts. Also I notice that I needed stronger pain meds after the SNB for the first 3 days I HURT with only Tylenol 2 - I had some Tylenol # 3 which I took and still could of used something stronger. I'm told others have been given percecet or vicaden (sp?).
Cathy
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travelgal: My BS told me that the standard of care to treat a Grade I, no nodes, no LVI is to do chemo if the lesion is 3 cm or larger. (Used to be automatic for all lesions 2cm or larger.) The med onc agreed. By that time the oncotype had come back with a recurrence score of 19 (I was hoping for lower) which means a continuous risk of 12% for 10 years with 5 yrs of tamoxifen. The onco result showed I could reduce that to 9% with chemo. We agreed the risks associated with chemo didn't offset the potential benefit. Ah, the numbers game of this disease....
To all: Got the news yesterday that a woman I know who was told she had BC learned that the lesion was misdiagnosed and was benign. She had sent the path out for a second opinion after the first group had stalled on the diagnosis. Add to this startling news that the correct diagnosis of benign was known by the first group and not conveyed to the patient for over a week!!!! So happy for her. So ticked at the first group of docs.
I remember the wait between the abnormal mammo and ultrasound. I spent those 8 days desperately searching for disease processes that looked like cancer (e.g,, birads 5, spiculated, hypoechoic, etc.), hoping that this was all a big over-reaction. Actually found 2 or 3 possibilities....The news yesterday reminded me so sharply of those days and then, the confirmed-by-second opinion biopsy report. Very weepy on this dreary, rainy day. Miss my life before all this. It's startling how some thing or another can bring it all back so clearly.
Last night I called a friend about this and she kept asking me if I was all right. It was clear that she thought I should be further along now that rads are over, now that I've had 4 months to accept this. I felt kind of guilty for, I don't know, maybe burdening her with how I was feeling. How could I have thought she could know what I meant?
Thanks for understanding. I know you do.
God bless us all.
(Edited for spelling.)
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Congrats MrsNice on your bone scan. I had one a couple weeks ago and yes, I have osteopenia. Arimidex will make that a lot worse so I will stick to my supplements and keep getting tested for estrogen and its metabolytes. Last test the estrogen was so low, they couldn't even detect it.
Kaz and Cathy, I agree, who on earth would want to be awake for a SNB? That sucker's incision STILL huts and it has been since 5/7 for me. Sheesh!
SoxFan - me too. Nothing is the same and I don't know what to do about it. I guess I should start getting used to the new "rest of my life".
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Just finished a visit with my daughter and am getting caught up on the messages. I can't believe how many new people have joined. I wish you all the best!
Amy Jo - I will keep you in my thoughts and prayers. I know that there are women out there living with stage 4 and doing well. I read Elizabeth Edwards book and she is in the same situation.
All - I have used the Dr. Susan Love's Breast Book as a reference and it has been really helpful. I do take into account that it was last updated about 4-5 years ago and we all know there has been changes since then. Also a site that I thought was helpful was www.nccn.org - it shows the latest protocols for different stages and types of breast cancer. I think we should all get honorary MD's when this is over. You have to register to use the site - but there is no charge.
I have never heard of getting lymph node biopsy without general anesthsia. I had three lymph nodes removed under general anesthesia before I started chemo.
I fired my first surgeon as I thought she was a real downer and put a negative spin on everything. When we decided to do chemo before the surgery I asked her about doing the lymph node biopsy first (as recommended by my oncologist). Her answer was "what difference does it make?"
Well I can tell you that it makes a HUGE difference. I found a surgeon that did the lymph node bx and it turned out negative. As a result - I was able to skip a further round of chemo. And the radiation oncologist tells me that I wont have to have radiation on lymph nodes.
I am taking off for a short trip before I start radiation - it seems like a long time since I have been anywhere for fun!
I wish you all the best and will keep you close in my thoughts and prayers.
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