How serious is stage 1, low grade cancer?
I'm trying to make a decision to if, when and what kind of surgery to have.
Comments
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barry I'm so sorry you are having to deal with all of this. You have been with many of us over the last months as a friend and as a supporter.
As far as what to do at this point, it is such a personal decision. For me with a stage 1 I went with a lumpectomy, rads, and now Femara. That being said, I have also changed my life style as well. I tried chemo, but my body told me it was not for me.
At least at this point in my life I have decided to believe I am cured till something says other wise. I pray you make a decision you feel good about. And just an aside I hope you will continue on the alternative board, for me you have provided much insite.
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I can tell you of my experience, but it may not be that everyone has the same one. I am stage 1, grade 1, ER PR+ in my right breast. I made the decision to have a BMX knowing that I would always worry about the other side. pathology on the others side showed cysts, calcifications and a pappiloma (sp?). While all of these were benign, the potential for problems was there. I'm told pappilomas sometimes need to be removed anyway, so I was glad I had made the choice foe BMX. Because I made that choice, I did not have to have rads which would have need necessary if I chose lumpectomy. I am 58 years old.
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This is the first time for me to post on the IDC threads. I've had 2 high grade dcis dx a few years back. My recent new dx is on the left breast...so I named my left breast the IDC breast, and my right breast the DCIS breast
I'm fortunate that this new dx is a low grade, which means it's probably been around for a while and slow to grow. There are few mixed features to this dx. I'm also ER + ...estrogen 3+ ....and progesterone 3+ ...which my bc surgeon says is good. I looked at pictures of low grade cancer cells. They don't look much different than our normal cells. Also to mention, the tumor is small.
My question is...how serious do you think a low grade cancer is? How fast does it grow? Would you wait until the summer to have it removed? Do low grade tumors met...? If so...how fast?
My bc surgeon strongly suggest a mx. This feels too drastic for such a small low grade tumor. After reading post of different types of b.c. reconstruction, and even mx w/out reconstructions, I'm pretty freaked out.
Plus, I work, and do not have the time to get off work for such a recovery. I am a teacher and more....no one can take my place at work! This is why I would prefer to wait until this summer.
I prefer a simple lumpectomy without rads or med's. If I knew that low grade would not become aggressive, I would be comfortable with a simple lumpectomy. Has anyone here had low grades to grade IV?
To add, if my dx was grade 3, I would aggressively removed the cancer asap. -
barry, I really understand how you feel. I am also a teacher, and I've had to take 5 months off because of how sick I was after the 1 chemo I had. I have been lucky in that my sub is very good, but I did worry about the kids the entire time.
As I understand it BC grows very slowly, so more than likely it's been there for a while. If you aren't comfortable with your BS suggestion I would suggest you get a 2nd opinion.
AS far as it being serious, it is still invasive even if it is stage 1 grade 1. If you look at my stats that's me as well. My Dr. with Moffitt in Florida felt a lumpectomy was all I needed at this time. As I said if you are uncomfortable with his suggestions see another Dr.
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Hi Barry,
I think I would have any cancer (regardless of stage/grade) removed as soon as I could. It is so unpredictable that I wouldn't want to take any chances.
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catbill I agree she needs it removed, but she has time to get a second opinion about a lumpectomy over a mx if she is not comfortable with the Dr's feelings. A couple of weeks to make her decison isn't going to cause her any problems
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Barry you need to get this removed. Waiting several weeks isn't a real issue but waiting months isn't a good idea. You should talk to your BS as to how long you can wait. I also recommend getting a second opinion. Did your BS say why he recommended a mastectomy over a lumpectomy?
My BS said MX but I had a larger 5.5cm tumor (not including a small part that was DCIS) and small breast. Way too much tissue would have to be removed so a lumpectomy was not possible. We both decided the other should go too based on the results of my MRI. I understood why lumpectomy was not an option on one breast and why it probably wasn't a good idea on the other. Doesn't sound like your BS has explained why s/he is recommending the MX over the Lumpectomy. You need to understand why. It might not have to do with the low grade/small size but with your history of DCIS.
BTW DCIS is typically high grade.
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I had a 1 cm, grade 1 cancer and had an appointment with the surgeon within 2 days and surgery the following week. It's invasive cancer, so by definition it's dangerous and deadly. I would not wait until the summer, or even the spring. And any invasive tumor, regardless of grade, will eventually metastasize.
I had a lumpectomy and rads. I'm in my thirties and all three of my doctors felt a lumpectomy was the way to go. I did consult with a reconstructive surgeon who also felt a mx wasn't necessary. But I also had multiple MRIs, all of which were clear except for that one tumor. With the lumpectomy, I missed a total of two days from work and could have taken off more time if I needed to, but I always felt okay.
I would suggest you get a second opinion regarding mastectomy vs. lumpectomy because I'm guessing your doctor is recommeding a BMX because of your previous diagnosis of high grade DCIS. In any event, I would not wait until the summer.
The link below is to a radiology book on Google books (highlight the link and paste it into your browser). Look at the graphs on pages 92-94 - they provide a time line of tumor growth. According to this radiologist, a low grade tumor doubles in size every 180 days.
Best,
J
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Cancer cells are unpredictable and can not always be detected easily. First, my doctor said a lumpectomy on an 8mm spot. Then another very small, questionable area was found and a preliminary biopsy said atypical cells. Doctor recommended 2 lumpectomies on my breast. Since I am small, my breast would have been pretty mangled. Due to the 2nd finding I decided on a mx which proved to be a wise decision as the final path report found DCIS throughout my breast. This did not show up on any of my testing. If I had chosen the 2 lumpectomies, I would have had to go back into surgery the next day to have a mx!
Is the doctor you are seeing a breast specialist or a general surgeon? You want someone that is an expert in breast cancer taking care of you. To ease your concerns get copies of all you tests and obtain a 2nd or even a 3rd opinion
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Throwing my two cents in...work, responsibilities, etc...must take second place to your health. I don't mean to sound cold but it is the simple truth. Believe me, you have to take care of yourself. That is the point and pure luck we have in having caught it in a early stage SO IT DOES NOT DEVELOP INTO SOMETHING WORSE. Like Lago said, a few weeks is one thing, but months makes no sense at all....Mine too was very early very low grade but I opted for full BMX with reconstruction. if you have lumpectomy, at the least you will need rads. I did not want to deal with the worry and fears over the other breast or lingering cells in the one with cancer. Please do not put this off. Get another opinon if youwish, but please do not wait.
Good luck and we are all here for you.
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Get a second or third opinion but do NOT wait. Make an informed decision. You don't want to be sorry about waiting and being in more trouble. We all know this is a terrible time to make life changing decisions but sooner is better. Good luck to you and to all of us!
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Barry,
As others have pointed out, waiting too long is dangerous. I, too, had stage 1, grade 1. I understand your concerns about working. I had a lumpectomy and radiation. I took off one week after the lumpectomy (and could have gone back after a couple days, if truth be told). I worked throughout radiation, just leaving work early for treatments. Please listen to what Annette said - your health is more important than your job.
Wishing you the best,
Karen
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Thanks for your imput...really, I appreciate it. My bs has good reason reason to suggest a blmx.
But...my problems are complex. I can't do rads because I'm high risk for RSD...already have it.
And Hashiminto's (autoimmune thyroid disease)...and for this reason one of the docs said, I'm not a candidate for bc inhibitors.
Because of my RSD and sympathetic pain disorder she suggest blmx w/out reconstruction. But...emotionally, I can't go there right now.
However, I'm open to getting a lumpectomy only, and if margins weren't clear to consider a mx w/reconstruction.
This afternoon, while researching this I read that it takes years, if ever, for grade 1 to metastasize.
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Barry - has your tumor been tested to see if it's Her2+? That made all the difference in my treatment - even though my tumor was only a Stage 1, Grade 1, ER+ and PR+ - even with an Oncotype DX score of 22 (which is low-intermediate) I had a uni-lateral mx with immediate reconstruction (and a lot of infections afterwards). I should have just waited to make this decision after getting the breast MRI (which showed no other abnormalities). A lumpectomy with rads has the same survival rates as a mastectomy...........however..........the more important decision you'll have to make will be concerning chemo treatment - do you need it or not? Did you get an Oncotype DX test done? Was your tumor Her2- or equivacal? If equivacal, you need to get the FISh test done - if the tumor is Her2+, you'll need Herceptin with chemo for a year.
I understand how difficult all these decisions are............good luck and may God's angels watch over you!
P.S. Edited to add - after my breast cancer dx 3 years ago, my thyroid was tested and showed to be hypothyroid and was immediately put on a low dose of Synthroid every day. It never interfered with any of my chemo/Herceptin/Arimidex treatments.
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barry, as you know there are ways to lower our estrogen levels with out ALs if you can't use them. I'm uncomfortable with you thinking about just having a lumpectomy with wide margins and no radiation. I know my BS got wide margins, but he still felt radiation was needed for my safety. Remember we are talking about your life.
As far as grade 1 mastastisizing that is a bit of a crap shoot. That is why they are doing the Oncotype tests now. In my case all said I should be safe but my test came up in the gray area. One just doens't know, the Dr's are trying there best to save us.
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I was told I had a small <1cm, grade 1, stage one cancer too. That was before surgery. To everyone's surprise, it was 2 cm, grade 2 and there was a 1 cm tumor in the sentinel node. Stage 2. You really can't know for sure until it is out.
Your doctor is recommending mx because of your history and knowing that you are rejecting radiation. You can go with a lumpectomy, but if I were you, I would try to get mentally prepared to have to change plans following that surgery if anything unexpected is discovered.
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I'm seeing an oncologist this week. I will ask for a Oncotype test. I am also having genetic testing done. I am seeing a pain specialist to see what they can do to prevent RSD or PMPS in surgery.
I admit, I am dragging my feet. Yesterday, I pretty much leaned toward alternative therapy only. The tumor seems small and un-aggressive. This morning a good friend took me out to breakfast and shared a dream where I died. I said, rebuke that dreamOf course, she wants me to do surgery. So today, she made me a little nervous and again I'm considering surgery.
Kira, what do you mean when you said, As far as grade 1 metastasizing that is a bit of a crap shoot. Do you mean grade 1 does not metastasize?
To be out front with you, even if there wasn't a problem with me taking chemo and other drugs. I wouldn't take anything that would suppress my immune system. I respect other choices. I wouldn't take tx or other bc inhibitors. I don't know why I was told that with Hashiminto, I can't take them. I plan to find out.
I just learned that if I had had radiation, I could have developed PMPS, or the spreading of RSD, which would have been constant fire in my chest. RSD stage 1V can be fatal...I am now stage 3 for RSD (hand & wrist injury...can spread).
It is important that the doctors, and oncologist look at our medical history before prescribing rads, or any drugs. -
swimangel72
In response to your being hypothyroid and taking chemo....most bc women are hypothyroid. I also have a thyroid autoimmune diseases. I'm not sure, but my guess is that the bc inhibitors side effect is bone loss (so does RSD), and hormonal imbalance. It's my gut feeling that bc inhibitors suppress your hormones, where my doc is trying to balance them. The two apparently don't mix. Again, I have to check further into this to know exactly why they said I couldn't take Al's. -
barry, I mean it can mesatasize. I'm a grade 24 with the Oncotype test which means I have a 16% chance it will go some where in my body and that is using the Al's. You can look at the stats which look good till the Onchotype test. As with all of us we have other health issues that effect us, in my case my 1 chemo treatment almost killed me, so Oncotype test results may say chemo but it can't happen again without killing me so no more chemo for me.
For me I will take the Al's, but also work on diet and other issues.
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Once you receive your pathology information, consult the 2011 NCCN guidelines regarding your breast cancer and the standard of care for it.
Can Stage 1 Grade 1 breast cancers metastize? Yes. You can read through these boards and find women who had Stage 1 Grade 1 breast cancers that metastized. While they may take longer to rear their ugly heads, they do occur.
Furthermore, you need to be proactive in reducing your chances of getting another primary breast cancer. You might not be as "lucky" the next time. I have a Stage 1 Grade 1 breast cancer. While my physicians have assured me that they think I will eventually die from something else, they are treating me aggressively to avoid not only a metastisis, but a second primary. So far, I haven't had any side effects from my treatment. Only time will tell if I made the right decision.
Good luck.
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This is a hard decision. For me I was Grade 1 based on the core biopsy. I decided to do BLMX and am still deciding on chemo. I had the oncotype test which has not made my decision clear on the chemo yet. My SNB showed clear nodes which was great, but when my surgeon was in there he saw the tumor and removed it because it was right there so I got a surprise lumpectomy (eventhough I had already planned BLMX). The path report came back and I learned two new things about the mass - it has angiolymphatic invasion and there were some Grade 2 cells in it so the final pathology indicates Grade 2. So I guess my point in all of this is the final pathology could show something else so just be prepared. For me the decision for BLMX was not that hard. The key things I considered were:
age - I am 45 and have a 4 year old son - I want to be aggressive in treatment to give me the best odds
Survival rates for lump+rads vs. MX are the same, but recurrence rates are higher in lump+rads
Now that I have BC in 1 breast I am twice as likely to get it in the other breast
This was all I needed to hear. I am having BLMX with immediate reconstruction in 4 days. Am I freaked out? Yes - I am, but I know I am really OK with my decision and know 100% it is the right thing for me. The decision is personal and there is no right or wrong answer....just your answer. Good luck!
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barry- I don't place alot of value on the Staging of grade 1 tumors. Mine was 7mm IDC, ER/PR +, Her2-. What should be the most slow growing, least aggressive cancer. However, after lumpectomy and SNB, I had 2 sentinel nodes positive. One was in the IM chain between the sternum and ribs. The other was an axillary node. My tumor was on the far rt side of the rt breast, yet one of the sentinel nodes was all the way to the center of my chest, and positive!! My BS was able to remove it (the first IM node she'd ever removed). I got unclear margins, and proceeded with a mx and had axillary nodes removed....with one more positive.
I couldn't believe my teeny, grade1 tumor had spread like it did. And I had had a mammo every year. So, I sent my path to Johns Hopkins for a 2nd opinion after they told me this kind of spread would be unheard of for a grade 1, 7mm tumor. Pathology came back the same.
For me, a stage 1, grade 1 diagnosis did not prove to be non-aggressive. I ended up with 6 mos. of chemo, rads, and a bilateral mx to treat my grade 1. Please realize this is not typical, but does happen.
Best to you...Joni
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I don't want to scare you but with all breast cancer there is a recurrance risk. Some risk higher than others of course. It does appear that with hormome positive that risk is always there where as the risk does seem to go down for hormone negative after 3 years. No treatment of course increases that chance.
Here are some links on recurrance:
http://www.reuters.com/article/idUSN1248209720080812
Note at the end of this article:"…The study found that women who had tumors known as estrogen receptor positive, in which the hormone estrogen is driving the tumor, had a higher risk of these late recurrences compared to women whose tumors were not this type.
Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors, Brewster said. "That was certainly a finding that we were surprised to see…"
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I was diagnosed with DCIS in my right breast after a biopsy.Then had an MRI on both breasts. MRI showed 2 small area's of suspicion on left breast,therefore I decided to have bilateral MX .Went into surgery not knowing what the area's of suspicion were.Less than 1 week later I get a call from my Surgeon telling me that they both were ILC tumors. So I am thankful that I decided to go with the bilateral or I would have been in there later doing it anyway. I had no chemo or radation since my tumors were less than 1CM. could not take the tamoxifen due to blood clotting disorders so had my ovary out. Been 14 months and doing good.
I wish you the best in your decision.
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Please, please, please, keep in mind that an Oncotype test result is BASED ON THE ASSUMPTION THAT YOU ARE GOING TO GO ON TAMOXIFEN!!! There is no point wasting your insurance dollars if you have no intention of taking Tamoxifen.
And yes! Even Stage 0 can get to mets. Last year on this board we lost a wonderfully talented artist from South Africa who started out with DCIS.
I needed to get back to work as fast as I could as I am the sole bread winner in my house. I had a double mast without reconstruction and took off between Christmas and New Years in 2008/09. There is much less residual or ongoing pain without reconstruction.
I do not know what PMPS is, but as for RSD I can't find anything on staging, that is new to me. I have Fibromyalgia and that was my fear - ongoing pain. Some women who have reconstructed with FM have had to get their implants out due to constant pain. I made sure I stayed on top of my pain but left the hospital without even Tylenol 3's. A mast doesn't touch bones, organs or muscles so there is very little pain. When you start putting in TE's and bringing tissue from other areas of your body you will be in more pain.
I now have Costochondritis which is a result of the surgery, but at least I'm alive.
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Barbe, your point that the Oncotype result assumes that the patient takes Tamoxifen is a very important one. I don't know however if this means that barry shouldn't waste her insurance dollars if she is not willing to take Tamoxifen. I don't understand enough about how the Oncotype test works in terms of how it determines your score, so I'm posing this as a question:
If someone gets an Oncotype result (which assumes the benefit of Tamoxifen), is it possible to reverse out the benefit of Tamoxifen to determine what the recurrence risk would be without Tamox?
- We know that on average Tamox. reduces recurrence risk by approx. 45%. So is it as simple as taking the recurrence risk as determined by the Oncotype score and increasing this risk percentage by 45%? Would that provide an approximate risk level for someone who is not planning to take Tamoxifen? Or alternately, is enough information provided within the Oncotype results that a doctor would be able to do the math to determine the benefit without Tamoxifen? And therefore could the Oncotype test still provide a meaningful (or at least informational) result to someone not planning to take Tamoxifen?
- Or is the Oncotype more precise in determining the specific benefit of Tamox. for each individual, based on the biology of their cancer? In other words, in some cases might the benefit of Tamox that's incorporated in the Oncotype result perhaps represent only a 15% reduction in risk (maybe because the tumor is only mildly ER+) while in other cases the Oncotype might represent a 65% reduction in risk (maybe because the tumor is highly ER+)? And if these differences exist and are built into the Oncotype score, is there no way to know from the information provided what the expected benefit of Tamoxifen is for each individual?
Does anyone know?
Also, for anyone with DCIS who is reading, just to clarify Barbe's point, it is true that someone initially diagnosed with DCIS can go on to develop mets. However, for this to happen, one of two other conditions needs to happen first: 1) The individual has a local recurrence which is not caught until it has advanced to become invasive; or 2) The individual was initially misdiagnosed and in fact there was some IDC in the first diagnosis (i.e. the cancer was not pure DCIS). The first is what happens in the majority of cases; the second can happen but is very very rare. For the second to happen, someone would have both an undetected invasive component hidden in their DCIS and some of these invasive cells would have moved into and through the lymphatic system undetected or moved into the vascular system undetected prior to the surgery to remove the cancer from the breast.
In most cases where someone progresses 'from DCIS to mets', if there was not an intervening invasive recurrence (which changes the diagnosis to IDC), it pretty much always turns out that there was a known invasive component right from the start. In other words, although someone considers herself to have DCIS (which is how I often think of my diagnosis since I had over 7cm of DCIS), in fact the diagnosis is early Stage I IDC, which could be either DCIS-MI (with a microinvasion, which is my diagnosis) or perhaps DCIS with a small T1a tumor.
barry, my apologies for taking your thread off topic but I know that whenever someone comments about DCIS progressing to mets, this has the effect of scaring a lot of the newly diagnosed DCIS women. Hopefully the discussion does not stay on this topic and gets back to your question.
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Beesie, My Oncotype scare was 24, but with taking the Tomox on the Onchotype score it brings my score down to 16%. If I had been able to finsih chemo it would have brought me down to 14%. To add another piece to the puzzle my Onc. told me the AL's bring the score down by about 2% over Tomox. If I understand it right that would mean with the AL's it's 16% rather than 16%.
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Jacee,
Good point. When I was waiting for my oncotype results, I read an article in one of the Oncology journals that examined the correlation between tumor grade (well differentiated, moderately differentiated, poorly differentiated) and the Bloom Richardson score versus oncotype score. Apparently, a low grade tumor is not predictive of the oncotype recurrence score.
J
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k414 I have to agree with that point. That is why in the past some early BC went on to matastasize and others didn't. One thing that suprised my BS was my score with lobular. I guess pure lobular usually come in at the low rate, but mine came in at the gray area. It just goes to show everyones stats are so different even if they look similar.
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My cancer never showed up on a mammogram or 2 high level ultrasounds. It looked and felt like a fibroid but my surgeon and I had a bad feeling about it. We discovered it at 1 cm; as it started growing over a six month period, I had the biopsy. 1.2 cm. er+pr+her2- breast cancer. I had a double mastectomy because I never wanted to go thru this again. My waiting 6 months allowed the cancer to get to the sentinal node, 1.98 mm, right below the comfort zone. 19 axillary nodes later, it had not spread. If I had waited one more month it would have gone to my armpit. Get it out, get a lumpectomy for now, decide on reconstruction later. Please take care of yourself.
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