How serious is stage 1, low grade cancer?
Comments
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LizM...I had DCIS, high grade, como type in the right breast. It was removed two years ago. You would think that if there were still high grade dcis cells in that breast, perhaps by now the right breast would had showed signs of califications. The bs I had before took out a quantrant of that breast...so perhaps that breast is free of cancer. Why remove a perfectly good breast?
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barry, How you set up a time to see another BS? I know how you feel, and think at this point you should hear what they might say. By the way are you at a BC center? I went to a BS connected with a cancer center, and am very glad I did.
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Barry, cancer spreads and is as serious, as it gets..plain and simple. ..You have some time but the breast cancer navigator essentially said 'just get it done' ...but get opinions so that you can live with your decision, whatever it may be. The fear will pass and you will move forward one step at a time.
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Hi Barry,
I am probably going to have a bi/lateral on Thursday- I am seeing the 2 doc's tomorrow. I have stage 1 5mm- nodes unknown. My mother, aunt, and others had bc. I had a supervisor who mentored me for several years and was only given a lumpectomy. Within 3 years in came back in the breast bone and later in spread...Because of everything I have seen, and having extensive lcis as well I am having a bi/ lat. I am not happy and I am scared but I hope I don't need chemo and want to go on. The onco already stated that she would like a trial of tamoxefen to kill off any sleeper cells- so I may even try it. So I understand- I work in a school system and it does make it challenging, but sometimes you just need to take care of you so that you can take care of everyone else. Good luck and hang in there.
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mdg and Ilovechocolate...praying for your surgeries...let us know how you are doing?
II just know that whatever I do right now, I don't want to do it out of fear, or make a decision w/out thinking it through (I don't want regrets).
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Good luck this week on your surgeries...the key is to take care of yourselves and make the deicsion that is right for you. My thoughts will be with/on you this week.
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I was stage 1. When I had a *cyst* removed, the path came back as BC, so I backdoored into the lumpectomy. My lumpectory was on Friday. I was back at work on Monday. No one knew a thing. I followed the surgery with mammosite then chemo (ac x 4 doses). I didn't miss any work because of the surgery. I took 1 week off for the mammosite because I had to go twice each day. I worked nearly every day through chemo. I did take off the day of chemo and one other day. But, my job did not require me to be on my feet alot. I did have to slug around network equipment & rack it and that stuff isn't light.
I made the decision that I would do everything I could to survive & have a long life. I didn't want to have to look back over my shoulder and think *what if...*. I wanted no regrets. So, I threw the kitchen sink at it to make sure it didn't come back or rob me of a long life.
Cancer is cancer. It's not a death sentence. But it is nothing to toy around with either. You've been dx'd with cancer. This means that your body is not able to kill of the cancer cells on it's own. Your body needs help fighting this life threatening disease. You are lucky that it's been caught early.
Survival rates of lumpectomy+rads+chemo are as good & sometimes better than mastecomies. BC is not automatically an mx. At least a lumpectomy + rads + optional chemo buys you time. You may never need to have an mx. Why chop off something if it's not necessary? Don't let it sit there & spread when there are reasonable treatments that are relatively short in duration.
Good luck with your decisions.
bonny
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Bonny, I was told by the oncologist and bc surgeon that chemo is rarely used for stage 1 cancer. Your cancer has to be about 2 C and HER + ...before considering it. To have a mammosite your cancer can't be too big. The cancers I had a few years back were too large for a mammosite, although they were DCIS, high grade so no chemo necessary.
Besides not needing chemo, I wouldn't do it anyway. For one, I already have an autoimmune disease, and I don't want to suppress my immune system anymore. For this reeason, I would not take any immune suppressers. I know that a lot of wonderful bc sisters have chosen that path. I support them in whatever they choose, and hope for healing for all of us.
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barry, Thats not true I had a stage 1 cancer. It was suggested I do chemo. I had mammasite radiation before chemo. I didn't finish the chemo because of how my body reacted to it.
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Barry, a galpal of mine had under 2cm breast cancer, stage 1 7 years ago (at the age of 36) and she ended up having a lumpectomy, chemo and rads and then tami for 5 years . They factor in age, size, and, in her case, margins. My margins were wide because I said "Take more than you need to. I have enough to spare!). In my friend's case, one side showed the margins were too close so they decided better chemo and kill it than the possiblity of it returning.
I also worked through the whole event...I took the week off after my lumpectomy because it was planned already as my summer vacation and I had not idea if all the ;fatigue' stuff I had read about would affect me ...I worked through rads...would teach in the am, do a session right after lunch, drive across town for rads and then come back to give feedback to the teachers...not ideal but it was better than going home after rads and staring at the ceiling thinking dark thoughts, which was mor emy fear than the rads.
I would say 'Get 'er gone' Barry. It is small now so don't wait until it is more of a problem if you can help it.
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Kira...All I know is that is what was said to me. Apparently there are a number of women who do chemo for stage 1 who chose chemo. I would asked, what kind of cancer did you have? Was it HER+ ? Was it at least 2 Cent? What kind of cancer was it for stage 1? I think these answers would play into the doctors recommendations.
Hey, I'm just learning about stage 1. I am not claiming to know everything about invasive cancer. Up to recently, my dx was stage 0 althought it was high grade the como-neu-type of cancer. The dcis actually was a little more of a concern in that if it had become invasive it would have been much more aggressive than what I have right now.
And I do plan to remove this cancer...just not sure when. I am considering a mammosite...considering only.
I sincerely appreciate everyone's comments. You all are very caring and precious souls. I am learning from you believe it or not.
(((Hugs to everyone))) especially to the two girls who had blmx today.
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Barry,
I dont' understand why you can't take estrogen inhibitors if you're HYPOthyroid. If you were hyperthyroid like me, I would understand. I can't take estrogen inhibitors and it drives me nuts, as my BC was so strongly ER/PR positive.
Estrogen is a thyroid uptake inhibitor. So, the more of it is in your body, the lower your thyroid hormone. The moment you start inhibiting it, then the thyroid starts perking up - so this should actually help with your Hashimoto's and you should need less thyroid hormone treatment. I cant' take the AI's because if I take them my thyroid starts going berserk and my free T3 and free T4 leves start skyrocketing.
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Barry,
You're right. Any decision you do, must be right for you and must be done rationally, not fearfully. That being said, I would listen to your doctor and probe for why he/she is recommending what they are suggesting. I would also consider a second opinion unless you think the doc is the best in the entire world. You've been down this road before; Be sure that you won't regret any action or inacction later if you make a decision that doesn't work out.
Hugs,
Flash
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barry you're so right we all must do what is right for us. By the way if you are considering the mammasite radiaiation I would highly recomment it. For me it was very easy. Just don't let any Onc. rush you into chemo in too short of a time after it that is where my problems started. As far as my tumor grade you can see my stats. The only thing that caused me to stumble was my Oncotype score of 24.
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Barry - You mention that the pathology report mentions that you have IDC with some mucinous and tubular features and that it is "mixed." I have "pure" mucinous IDC.
First off, when you have the tumor removed, make sure it is read by two labs. And by all means, get the Oncotype DX test if it is ER+ and you are node negative. Find out if it is, NOW THIS IS IMPORTANT, SO WRITE THIS DOWN --- is it a mixture of tubular and mucinous OR is it MOSTLY IDC with a little bit of tubular and mucinous mixed in with the IDC.
Let me explain. With 80% of breast cancers, it is a hodgepodge and they are described as IDC -not otherwise specific. Then you have ILC, IBC and the "favorable" subtypes which include tubular and mucinous and a few others. "Pure" tubular or "Pure" mucinous carry a most favorable prognosis, whereas "mixed" tubular or "mixed" mucinous carry a prognosis in line with traditional IDC. So what I'd like to know if I were in your shoes, is IS YOUR TUMOR a mixture of the tubular and mucinous OR is it mostly a traditional IDC? That information, along with the Oncotype DX test, should help you and your physician come up with a treatment plan. Once you gather all of your information, make sure you look at the current 2011 NCCN guidelines for standard of care.
Good luck.
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barry, I was just reading the posts discussing whether or not chemo is given to those who are Stage I and I thought that I would refer you to the NCCN treatment guidelines. I see that voraciousreader beat me to it. ;-) The NCCN guidelines are the treatment standards used by most doctors in North America (and probably beyond); they are updated annually and they really do represent "standard of care".
Here is the Physician's guide, the ones that doctors use. You need to register to be able to access the info: NCCN CIinical Practice Guidelines in Oncology - Breast Cancer
Here is the Patient's guide, which you can access without registering: NCCN Patient's Guide - Breast Cancer
If you look at pages 13, 15 and 17 you can follow the treatment recommendations for those who are have a mixed tumor, are Stage I, node negative, ER+ and HER2-. For grade 1 tumors, the guidelines suggest no need for chemo if the tumor is less than 1cm in size however for grade 1 tumors that are larger than 1cm (Stage I includes tumors up to 2cm in size), they recommend using the Oncotype test as a guide as to whether chemo would be beneficial or not. For those who have grade 2 or 3 tumors, they recommend using the Oncotype test starting for tumors that are 6mm in size and larger. So clearly they are saying that there are cases where chemo should be considered for patients with even quite small Stage I tumors.
I hope that the guide is helpful to you.
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I had a 1.1 cm tubular and my oncologist wouldn't rule out chemo until we knew my oncotype score.
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barry just to let you know the chances of being BRC+ if you are Ashkenazi Jewish are slightly higher. If there is no history of breast cancer in your family there is probably a very small chance you will test positive. I took the test too because I'm Askenazi Jewish. There was no history of breast cancer in my family till me. I tested negative.
Good luck with the test. I hope you get a negative too.
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I have one Jewish grandmother. I have no idea if she was an Ashkenazi Jew. She married a Christian man and her family disowned her. My husband is 100% Jewish so my daughter has more of a chance for that gene than I. Are Ashkenazi Jews from Holland?
A genetic counselor called me today. My bc surgeon asked them to call me. I thought it was interesting that he wanted to know any thyroid disorders in my family, all kinds of cancers, or other diseases. They said that I fight fit a study on genetics???
I'm learning from you sweet ladies that grade 1 can be a little more serious than I thought. My new oncologist wants me to have a oncotype test. She said it's done after the lumpectomy. I decided on a lumpectomy. I am considering mammosite radiation. Must first read the threads on it and a little research before making that decision. I am most comfortable with an imformed decision.
The oncologist said my tumor is 1 centemeter. I looked up centemeter, and thats about the size of your small finger nail. I looked up millinmeters and thats about the size of sugar crystle. It gives me a better visual picture of the cancer.
Thanks for all your great comments, and encouragement...
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Barry - Are you scheduled for an MRI BEFORE the lumpectomy? This study, reported at the 2009 San Antonio breast conference, came out a few months before my diagnosis of mucinous breast cancer. What it is saying is that if you have a mucinous breast cancer, there exists a possibility that you have more than one. In my situation, the mammogram missed my tumor. The ultrasound found it. And, the MRI found a tiny bit of DCIS located right next to the tumor. I was offered Mammosite, but chose full breast radiation because of the small risk of all of those tests being inaccurate.
Also want you to know that the size of your tumor will not be "official" until it is removed and the surgical biopsy is done.
Once again, good luck!
MUCINOUS BREAST CANCER IS OFTEN
MULTICENTRIC-MULTIFOCAL
December 18, 2009 (San Antonio, Texas) - A
rare subtype of breast cancer, described as mucinous because the tumor produces
mucous, has long been associated with a favorable prognosis, but new research
suggests that the picture may be less rosy than previously thought. Researchers
found that about one third of these women have multiple tumors that are
undetected by mammography and ultrasound, and they caution against
undertreatment of this patient population.
he new findings were presented in
a poster here at the 32nd Annual San Antonio Breast Cancer Symposium by George
Perkins, MD, from the Department of Radiation Oncology at the University of
Texas M.D. Anderson Cancer center in Houston.
"While mucinous breast cancer is thought to be a disease with a favorable
prognosis, our study is the first to identify it as one associated with
significant multifocal presentation, which is a potentially unfavorable aspect,"
he said.
"In recent years, there has been an overall trend toward minimization of
treatment for women with this subtype, because these mucinous tumors are
considered to have an extremely favorable prognosis," Dr. Perkins explained in
an interview. In particular, there has been a trend away from using whole-breast
irradiation in these patients, so some patients receive no radiation at all,
whereas others are treated with partial breast irradiation, he explained.
"Our study shows that that about one third of these women have more than a
solitary lesion. This disease may be more multicentric than previously thought,
and this is the first time that this has been reported," he said. These new
findings suggest that undertreatment may be a "significant hazard for patients,"
he added.
It is important that the
pendulum does not swing too far.
"You have to be very careful about offering no treatment or minimized
treatment," he said. "In an era where there is a concern about overtreatment, it
is important that the pendulum does not swing too far so that we are
undertreating."
Claudine Issacs, MD, director of the Clinical Breast Cancer Program at the
Georgetown Lombardi Comprehensive Cancer Center in Washington, DC, who moderated
a press conference at which the findings were highlighted, added:
"Partial-breast irradiation is an investigational treatment and should not be
offered as a standard of care."
Large Series of Rare Tumor Type
Mucinous tumors are diagnosed in about 2% of all breast cancer patients, but
they are more common in older women. This subtype is found in about 8% to 10% of
women 70 or years or older, but in fewer than 0.5% of those 35 years or
younger.
The M.D. Anderson team reviewed the charts of 264 patients diagnosed with a
pure mucinous carcinoma from 1965 to 2005; the median age was 57 years, and
median follow-up was 14 years. "This is one of the largest single-institution
experiences with a relatively uncommon subtype, and it has a significant
long-term follow-up of patients," Dr. Perkins said.
The favorable prognosis is apparent from the long-term follow-up, as shown in
the table below.
Outcome After Long-Term Follow-Up
Outcome
5 Years
10 Years
15 Years
Overall survival rate (%)
95
97
97
Distant metastases-free survival rate (9%)
88
95
94
Local regional control rate (%)
83
92
85
On initial examination, only 10% of these women had a multicentric/multifocal
presentation. However, a detailed pathology review revealed a 38% rate of
multicentric/multifocal disease after resection, which surprised the team, Dr.
Perkins explained.
"We had previously been surprised by the decreasing age at presentation in
this population, and by the regression of favorable outcomes toward the lower
outcomes of other common breast cancer subtypes over time," he explained in a
statement. "This reinforces our commitment to interdisciplinary care and true
personalized patient treatment in this variant," he said.
There needs to be a move away from "the assumption that it may not matter
which treatment approach is taken because this is a favorable disease," he
added.
32nd Annual San Antonio Breast Cancer Symposium (SABCS): Abstract 4117.
Presented December 12, 2009. -
barry 80% of the Jews in the world are Ashkenazi Jews. It's even higher in the US. Ashkenazi Jews are from eastern & central Europe. I'm pretty sure you and your husband are of Ashkenazi decent. http://en.wikipedia.org/wiki/Ashkenazi_Jews
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largo...Thanks for your help. I appreciate the information.
I had a annual mri in December. They called and asked me back to do the mri due to it being difficult to read...too much movement, which caused lines throughout the mri. I opted out of doing it over due to taking the contrast dye so close together. So I said, try to read it because I wasn't doing it again. They instead asked me do a ultra sound that showed up the tumor. However, they only used the ultra sound in the 8 o'clock position. I thought sense I was there they should had done the whole breast.
The oncologist checked my breast and said that I have very lumpy breast especially for my age. I have been told they are fibroysitic breast. It concerns me that the lumps could be mucinious cancers. My tumor was mixed, not pure, which means other cancers can hide in the mucis? They biopsied two areas. I watched it on the ultrasound. They were close, slightly a part. I wonder if they were the same or different types of cancers...? Just trying to figure out how they can say it's more than one type of cancer.
I would do a mx before full breast radiation, because if ever dx again, I would want reconstruction.The possible pain issue is huge for me. I don't like any of the choices right now...the less invasive seems to be a lumpectomy with a mammosite.
Also...do you believe that most bc surgeons or oncologist are aware about the mucinious info that you posted? The surgeon or oncologist did not tell me that my cancer was a favorable invasive cancer. They did not questions the lumps in my breast or suspect them to be more mucinious. Either one talked about my prognosis. They just said it will grow. I read that the mucinious cancer rarely mets or goes into the nodes. Apparently what other cancers I have are in the mucus? I am trying to picture this unusual cancer
Another question, do you know of women here at bco who have later stage mucinious cancers?
My husband is a Russian Jew...I would have a little of the European.
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Barry - First off, none of my physicians said directly to me, "You have a favorable breast cancer." Instead, they pussyfooted around. One said, "You're not on the Titanic...You're on the Queen Mary." Another said, "You'll die from something else." So don't wrap your head around "favorable" or "unfavorable." Instead, what's important is to find out as much as possible about exactly what the prognostics are about your tumor, so you can come up with a treatment plan that suits you.
What I'm still unsure about with regard to your tumor is whether or not it is a mixture of tubular and mucinous. OR, is it a "traditional" IDC with some tubular and mucinous features. If it is a traditional IDC, then when you look at the 2011 NCCN guidelines, you can follow the the treatment plan for traditional IDC's with your markers, rather than the guidelines for tubular and mucinous tumors that are outlined on another page.
For mucinous breast cancers, the most important prognostic marker is whether or not the lymph nodes are involved. For lymph node negative mucinous breast cancers, the prognosis is excellent. Tubular also carries an excellent prognosis, even if there is lymph node involvement.
Are your physicians aware of Dr. Perkins study? Ask them! Without a doubt, I think it is still worth investigating getting another MRI and certainly another ultrasound. In my situation, when I had the ultrasound, the radiologist wanted to biopsy one suspicious "cyst." I chose to do the biopsy elsewhere and the SECOND radiologist chose NOT to biopsy THAT "cyst," but yet ANOTHER "cyst" which ultimately proved to be a mucinous tumor. It wasn't until I had the MRI that the DCIS was found. I too, have very dense and very cystic breasts which are a nightmare for my doctors.
So.... what do I recommend you do come Monday morning?
Ask your doctors if they are familiar with Dr. Perkins' study. Ask them if they are confident with radiology reports. By all means, if there are any lingering questions, then follow up BEFORE surgery with the necessary tests. Once you have all the tests in place, then proceed with surgery. The final surgical biopsy report will dictate treatment plan. In the meantime, check out the NCCN guidelines.
How are other women doing? If you do a search here on the board, you will see that there have been a select number of women with mucinous tumors. One gal popped on to say she had one 20 something years ago and has gone on to raise a family. What surprises me is that mucinous breast cancers are usually found in older women. Instead, I've found here that a handful of women in their 30s, 40s and early 50s, like myself, who are premenopausal have gotten it.
If you find out after surgery that you still have a Grade 1, low Oncotype DX score and NO node involvement, then you will fit the profile for an "excellent" prognosis. But like my medical oncologist said to me, sending me to a dark place in my mind, "With breast cancer...you never know." I just want to close by saying, even if it's a Grade 2 or 3 or is HER2+ you still may have very good prognosis because of the amazing treatments now available.
Good luck. My prayers and good thoughts are with you.
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I also opted for a fully radiated breast rather than joining a ne wstudy in Canada that only radiates the site of the cancer and does it 2x per day for fewer days...I figured...if you are going to radiate me, do the whole area and zap those cancer cells ....I had excellent margins (I had told them to take a nice big piece of breast thank you very much) and all the 'right things'....receptor positive etc..excelt it had lobular features which means a 50% chance it will be found in the other breast within about 14months, according to all the research I have done and my surgeon and oncologist and radiologist were all in agreement.....but I still did not feel like taking a chance and just radiating the area it was found in. So I opted for the tried and true method....
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Barry... about ultrasounds... they are only used to look for something of interest... they don't ever use the ultrasound to go looking for something. That's what the Mammogram/MRI is for... I had an MRI just to make sure I had nothing else going on before my lumpectomy, and low and behold, they found 2 areas of concern.. Luckily after an MRI-guided biopsy of those areas, they were benign. Had they been cancer, I would have been diagnosed with multi-centric cancer and had an MX... Important to have all the info BEFORE surgery, even if it means another MRI, with contrast.
Also, I had been told with MRI and ultrasound that my tumor was 1.2-1.5cm... reality was 1.9cm. AndI had been told I had clean nodes, from initial path report, but when the full path report came in, I had a micrometasis (trace cancer in the sentinel node).
And I am in chemo... stage 1b and happy about it.
And I am a teacher. I missed some work after the lumpectomy only because I was told to, but felt fine... And haven't missed any work during chemo except for treatment day... but I could have worked a half day then too if I'd felt like it... I felt TOTALLY fine.
It sounds to me that some of your info may not be totally correct, like no stage 1 cancer patients get chemo... I would look into a second opinion from a reputable doctor or cancer center.
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Barry, I wish you would reconsider having the MRI re-done. I had a screening mammo after I found my lump, followed by a diagnostic mammo and an ultrasound. Nothing else was found until I had the MRI which showed an additional spot of IDC and a spot of DCIS.
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Just to add about MRI's I had a small LCIS found at the time of surgery that the MRI and the other tests didn"t find. No one really knows till surgery what will be found.
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hey all had bilateral masectomy and immediate one step reconstruction Thursday evening. I am home now- suprised how painful this is on the chest. My sweet husband says I look great. The preliminary lymph nodes are negative so maybe I will be done with nightmare in a few weeks. The onco still wants tamoxefen so we will see.
take care and prayers to all
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ilovechocolate...hey...wonderful that you are home and well, but sorry you are in so much pain. Did you have any reconstruction done or are you waiting? Hope you heal soon
(((HUGS)))
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Ilovechocolate...I am curious about the one-step recon... Did you have nipple sparing or just skin sparing?? And when they take out the breast tissue, they just then slip in an implant?? If thats the case, why do people go thru TEs? Does it depend on how much skin is there to use?? And when people do flaps, they take muscle to support the belly fat, what supports the implant to keep it in place? Or maybe because its synthetic it doesn't need support?
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