CALLING ALL STAGE I SISTERS
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oh thank you so much for your imput this gives me more confidence in helping me with my decision....
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DenverDiva... I missed your lovely postings.
I hope you are doing fine and you get a computer soon.
Hugs are your way.
Sheila
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Hi Ladies! I am also a stage 1. I had a lumpectomy in April '09 & then radiation. I've been on Tamoxofin for 6 months & now "something" is in my uterus. I am scheduled for a d&c & biopsy at the end of the month. My gyno is trying to reassure me that it is just a side affect of Tamoxifen. Nothing is reassuring after the initial diagnosis `of BC & not knowing.
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MBCR,
I hate to hear you are going through this and YES, ask the ladies how much we all let our brains take us to the "dark" place since our diagnosis. With this said, I have had myself in a tailspin for a few weeks over a backache confident it was something, and I just got my clean bone scan. So, my hope is, they take this out and find out it is noncancerous and you can move on.
Keep us posted!
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Hi all,
Just looking back at the posts over the last few days..
If you are looking for a warm place, come and visit me.
It was 102 degrees today.
Hugs to all
Viv
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Nicole ~ I am SO HAPPY that you had a clear bone scan. I certainly know how that feels!! YAY for you!!!!!! And, a good mammo, too. You must be on cloud nine!
Labby ~ Holding good thoughts for you for a clear MRI.
{{hugs}}
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Catlover,
I went to Walter Reed for most of my specialist dr. appts. while I was living in Columbia MD...
But, I wasn't too impressed with any of the drs. there... So I was feeling really grateful that my breast cancer was diagnosed here in NC....
Hugs to you, my friend!
Harley
P S Glad to read that you are getting good care there. I have read that they have a breast center now at Walter Reed, so I am sure they are making progress in the area of breast cancer. It may be that the only other care I got there was for other, routine type stuff...
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mississippi and Everett -
I had Stage 1, grade 1 IDC (1.2 cm), along with DCIS, LCIS, and ALH. Oncotype score was a 15, which is a 10% chance of recurrence/mets, but before we had results I had talked with Onc, who said if I was to go ahead with chemo, he would recommend 4 cycles (but I can't recall the exact chemicals) - kind of a "lower grade" chemo. When Onco results were returned, my charts showed that chemo would actually be detrimental in my scenario - would do more harm than good, so that made the decision pretty easy. I elected to have bilat mast with TE's, which reduces my chance of a local recurrence (in the breasts) to about 3-5%, and chance of distant recurrence (mets) remains at about 10%. Because of the mast, I also got to skip rads, but am on Tamoxifen for the next 5 years. I am thrilled to have the old girls gone, and am very pleased with the way the new girls are looking so far.
I second the suggestion of writing out your questions in advance - make sure you get all the info you need to decide what's best for you. So sorry to have "met" you here, but it is nice to know there are so many great women who've gone before us and are willing to share their experience and knowledge. All the best to each of you - stay strong!!
Erika
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Hi, All! Been away a few days from the computer...had to catch up on 3 pages, whew! I love this thread.
Jaime--thanks for the info on waiting to book for Disney...I use all rewards points for the hotel and airline, so I cant get the food package thingy. I checked on that. I am so excited! I cant wait!!!
My friend's friend, Rita, is still hanging on. I put her picture on my cell phone wall paper so everytime I open it, I can pray for her. It STINKS what she is going through!!!!!
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Grakemon, I had a BMX with TE and even had my first fill today. It wasn't bad at all, but I'm a little sore tonight. I think the girls are going to look great.
I'm curious what on the report showed chemo could be detrimental? I'd love to know, so I can ask the right questions.
How long does it take to get an oncotype score done?
Thanks, Deb
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PS--My DIEP surgery was changed to March 4, so I have two more weeks to lose weight (ha ha, yeah right!)
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Hi all! Onc visit went so much better than I anticipated. Actually it started out horribly and ended up pretty well. I began to cry on the way there and couldn't even talk to DH. And then the nurse came in to gather information and just the questions were making me think about things and the way she asked and I broke down quite a bit. She encouraged me to let it out. My DH keeps telling me to quit being a 2x4 and let go. We finally got to my anger. Why has my body that I have tried so hard to do well by let me down. Anyway, the nurse, who I adore, was wonderful and then the onc was just as great. They make quite a team and I could tell they have been working together for awhile. I was there for 3-1/2 hours! We covered everything imagineable. We had two pages of questions ready. So pardon this long post but I received some fascinating information and insights. Of course these are just from my oncologist and should be taken as only one point of view. What's that disclaimer, the opinions expressed do not reflect the...whatever.
A very thorough presentation of breast cancer, cell structure, statistics, staging classification, treatment methods, recurrence, survival and lots of anecdotes mixed in about all kinds of breast cancer was made while continually referring to my place in the picture. During that time I "learned" the following interesting points:
Oncotype DX testing has reduced the onc's chemo patients by over 40% in the past 5 years.
Chemo is beginning to reveal more and more side effects 10 years after treatment ends.
Chemo brain is not a joke.
Birth contol pills have nothing to do with breast cancer.
Previous exposure to radiation makes one a high risk for breast cancer (I was never exposed.)
The inner thigh flap procedure has problems 8-10 years later with the thigh. The muscle tissue has to be repaired. It's not a surgeon's fault. The procedure has an inherent problem that is just now coming to light.
Breast cancer conferences like the one in San Antonio are evidently quite a "show" based on what the onc told us about presentations of data to support various procedures, treatment, diagnosis, etc.
Tamoxifen and Arimidex are equally effective for both pre-menopausal and post-menopausal women. The difference in effectiveness is less than 0.8% according to a presentation in San Antonio.
Thanks to OncoDX test usage for past several years, he has been able to "predict" where a patient will fall in scale prior to test fairly accurately. He compares all his patients path reports and everything to what have been the results and is able to "predict" the Onco score pretty accurately.
Chemo can be controlled to lessen side effects. Don't worry about any horror stories of nausea and such. Yes, your hair will fall out. But it will come back.
Risk benefit analysis is the primary driver in choice of treatment.
- After all this and laughing and crying, I find out that my estimated chance of recurrence at this point is probably 8%. My "predicted" OncoDX score is going to be in the "no benefit with chemo" range. He gives me less than 10% chance of being in intermediate range. I was happy with that. I will be on hormonal therapy as preventative measure. It would decrease my recurrence chance to 2-3%. Of course all this depends upon the OncoDX test results which won't be available for 10 days to 2 weeks. I'm still in the Age of Uncertainty as he calls it.
- I learned to let things go. I learned I am not responsible for this disease. I learned to live.
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Hi all, I am new to this board but I have been checking it out from time to time but never felt I found my place until this thread was started. I too was diagnosed with stage 1 BC in 07, at age 40, had a lumpectomy and rads, no chemo. I later regretted my choice of lumpectomy, as I am unable to move on with my life and live in constant fear of recurrence. I just recently decided I am going to have a double MX for peace of mind. Everyone thinks I am crazy but to me the crazy thing is the constant testing and the wait for results. Last Friday I had and BR MRI and they called me yesterday to tell me they want to do more testing as they saw something... Once again my life is literally put on hold, my family is panicked and I can’t help looking at my 8-year old girl thinking if I am not going to be there when she graduated from high school. How do you guys do it? How do you move on from this? I need all the help I can get!
Diagnosis: 4/18/2007, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-0 -
cris2001
At 43 years old, I found so much peace of mind once I decided on my bilateral mastectomy. My surgeon announced at my 1 week post op visit "that I made a very good choice" as it turned out I had a secondary primary cancer in my right breast and then DCIS in the non cancer left breast.
I know I will still have follow up testing and worry the rest of my life, but the calmness that washed over me once I made that choice was reassuring.
I went with the skin sparing surgery and chose to have implants. I have tissue expanders in now and will get my soft squishy implants next month!
My reconstruction is progressing smoothly and I love my plastic surgeon.
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Hi Cris2001, I know the fear that you're speaking of. I get it from time to time too but you need to remember that many women get the exact same procedure that you did and never have a reoccurence of any kind. You could have both breasts removed and still get another cancer in the skin or elsewhere in the body. My doctors firmly believe that lumpectomy follwed by rads is just as good as a double MX. Try to think positive and don't let your worries take away your life.
Take care,
Nancy
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musiclovermom,
Thank you so much for your comments, I am so scared of the surgery. I cry all the time now and feel totally lost. To know that someone else made the same choice and is happy with it really helps. My surgeon will not do a skin sparing op. even though I would prefer. I too am opting for implants. I am convinced they will find more BC somewhere in my breasts.
Thanks again for you reassuring words.
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cris2001
Why won't your surgeon do a skin sparring MX? That just doesn't seem right to me. Even my original general surgeon said he would "try" to save skin....
You can get through this...I am. Anyone can if I can.
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Hi Mississipiqueen, surgeon says my BC was too close to the skin and there is too much breast tissue near the skin to make it woth sparing. Apparently no surgeon here believes in skin sparing mastectomies. Always amazing to see how different the opinions of experts can be. I am at MassGeneral and Dana Farber, so am pretty confident I am in good hands, still, makes me wonder. Thanks for your kind words, I loved your post with all the info and aswers you provided, very helpful to compare notes. Still, it just feels like a crap shoot...
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Hi. Thank you for sharing your information. I am curious about the second primary cancer found in your right breast. Did you have an MRI? Why wouldn't that have been found initially?
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cris2001
I also felt that way about finding more cancer and as it turned out they did... BUT I have a family history and alway felt it would be WHEN not IF I got breast cancer.
The peace of mind was what I needed.
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cris2001
hi and welcome... You are right... it's a crapshoot.
I felt much the same way that you feel, so I opted for the bilateral mast., and my surgeon convinced me to get reconstruction. I just knew that I'd be so scared of recurrence, and since my breasts were very small, my surgeon said it would be best to just take them both off, because it would make the reconstruction easier. My bc dx was 3/15/07.
I'm glad that you are confident of your drs. skill and medical knowledge; it helps when you know you are in good hands.
Please keep us posted, and let us know how you're doing.
I'm keeping you in my prayers.
Hugs
Harley
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One more thing I feel is worth mentioning for all the newly diagnosed... my surgeon was too quick in pushing the lumpectomy on me. I am sure it was the most logical option for me, but what I didn't get from my doc was the story about what happens after the surgery and what it means to be a survivor at age 40, like: you will be tested and retested for the rest of your life, you will have to agonize over results, the call backs, the looks the nurses give you after the test is done… you will wonder when and if another BC is growing in your "surviving" breasts, because as much as the numbers are encoraging for stage 1, the risk of recurrence is higher than the non-effected population. You will check your breast every night, in the dark, wondering if it feels right, and what that strange lumpyness is here and there. When you get BC at age 40 and you have quite a long way to go, (well, supposengly...), you have to endure mammograms and MRIs for quite a long stretch of time. So my point is… the question your surgeon should ask you is what kind of person are you? Are going to be able to handle the stress related to testing if you spare your breasts? They should mandate you talk to a therapist before making a choice because the emotional part of being a survivor is just as important for quality of life as the physical part.
I wish someone told me about all this, I would have made a different choice, avoided rads and felt less stress overall. I am NOT saying MX is right for everyone, or that the clinical benefits are better, all I am saying is that some people are just not equipped to survive the stress of surviving.0 -
Linda
I am not sure if you were asking me about the second primary cancer, but I will share...
I had a biopsy - that lead to an excision of a milk-duct - that lead to a lumpectomy - that lead to the MRI and bilateral mastectomy.
Each step of the way it felt like my life was snowballing out of control. When the path report came back after the lumpectomy and I was told they needed to go back in and there was extensive amounts of pre-cancer all through my right breast, I calmly looked at her (my BS) and told her to take the whole breast and while she was at it take the other one too. I believe I had made this choice a long time before I saw her that day. She sent me for an MRI and did the BMX.
Deciding on the BMX took radiation off the table for me and I am good with that since from what I have learned, reconstruction would have been more difficult with rads.
As far as the second primary cancer, it was found by the pathologist and so was the DCIS in the non-cancer left breast.
My oncyotype dx for the lumpectomy was a 13 and the oncyotype dx for the mastectomy was a 9. With scores so low and no breast tissue I did not have rads or chemo.
No one could have convinced me there was not cancer in my other breast - I made the right choice for me.
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I remember feeling "if my breasts are trying to kill me get rid of them!"
I had my children, breast fed them and now my breasts are a health hazard? WHY keep them?
I flat out told my Plastic Surgeon "they are defective - get rid of them!"
I can have new perky boobs that are NOT trying to kill me! I do like to make him laugh...
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Musiclovermom,
Now that made me laugh! We think alike. I used to love my breasts, I though it was the best part of my body. I hate them now. I do not want my husband to even get close to them. What a mess I am, sorry for bringing everyone down, but thanks for cheering me up!
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cris
I hear you completely about the stress and emotional preparedness. My first general surgeon was for lack of an appropriate term, a jerk. Things got better at a specialist but still by then everything had moved so fast I was a wreck for the past month. Yesterday I finally met someone that really seemed to want to "know" me to help me work through my fears of chemo and recurrence. I don't fault the BS or PS at all for not dealing with this because they were dealing with the "other side" of the situation. My advice to anyone in the future would be to separate this disease into stages and figure out the emotions with each stage. Diagnosis is fear, utter terror, complete ignorance unless you have been close to it before. Then comes eradication, some form of surgery and dealing with the consequences; missing or mis-shaped breasts. During this time significant others are forced to deal with the situation. And then comes prevention or maybe more eradication/prevention combo. There are a whole new set of fears here. And all during this time, I am sure there are many like me who kept going why, why, why?
Talk openly and honestly about it all with whomever you trust in the medical profession. Find the person that can help you address your fear. They are there and you will find one.
peace be with you
Debra
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musiclovermom and cris2001
I felt the same way you did... my breasts are trying to kill me, so I want them taken off...
mississippiqueen
there are LOTS of surgeons out there who are JERKS... but MY surgeon is really nice, and he seemed to know how I was feeling. Of all my drs. I really LOVE him, and I wish I felt the same way about my onc... he can be a real A**hole sometimes!
Hugs to all
Harley
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I do love my doctors!
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Harley - I feel the same way...LOVE my surgeon, but not so crazy about my onc. I think he's very smart and knows what he's doing, but his bedside manner is not the best.
I had a lumpectomy, then chemo and rads and have been very happy with the results. I do wish that I had more time to consider my options before I had to make a decision about surgery, though. But if I ever have a recurrence, both of "the girls" will be gone!
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carolinachick
my onc is a 2nd opinion dr. and he was SO nice at first. He even held my hand, and we talked about my fears and my concerns about chemo. I was one of the 'lucky' ones who got to choose whether to do chemo. He even called the Genomic Health company to get them to pay for my Oncotype test... but when I got a 28, and decided after much thought to go ahead and get chemo, he go upset, and I saw a different side of him.
We get along ok now, and I even hugged him at my last appt., in December.
Harley
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