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dcis radiation vs mastectomy
5/28/09 - 4 specimens removed using stereotactic biopsy.1) fobrocystic changes. Focal lobular neoplasia (atypical lobular hyperplasia) 2) fibrocystic changes with adenosis, duct ectasia and chronic inflammation. Focal lobular neoplasia (atypical lobular hyperplasia). See comment 3) fibrocystic changes with adenosis and duct ectasia. Lobular neoplasia (atypical lobular hyperplasia focal fibrosis. 4) fibrocystic changes with focal fibrosis and chronic inflammation. Focal lobular neoplasia (lobular hyperplasia). Comments: One specimen, special stains were performed (CAM5.2, smooth muscle myosin heavy chain and e-cadherin). The lobular and ductal epithelium shows positive staining with CAM5.2 and ecadherin. No infiltrating cells were noted in the stroma. Myosin showed myeloepithelial layers surrounding the breast structures. They did not get to the microcalcifications that were barely seen on mammography. The Doctors did not want to do anything further. I kindly persisted to know what the calcifications were. 8/7/09 -Needle loc mammography guided - biopsy. Removed 4x2x1 cm. Calcifications are cancerous. Need to do Partial mastectomy. 8/21/09 - Partial mastectomy. Removed 7x5x3.5cm . There is fat necrosis surrounding the biopsy site. No gross evidence of tumor is seen. Patient Status Post Previously Diagnosed Lobular Neoplasia. Biopsy Site With Granulation Tissue. Residual Lobular Neoplasia, Multifocal. See comment. Focus of Atypical Ductal Hyperplasia Within Lines of Excision. Intramammary Lymph Node, Chronic Lymphadenitis. Comment: The lobular neoplasm varied from atypical lobular hyperplasia to focal lobular cancinoma-in-situ. No invasive tumor was seen in the entire specimen. This breast is at risk for developing invasive disease, but it represents a field effect without discrete foci. Will someone please explain to me factually, logically, why radiation won't be of any benefit. The oncologist stated that since I won't be having any children, we can do a mastectomy.
Huh?!? I have been doing a lot of internet research and am not sure if radiation will or will not be a benefit. APBI also comes in to question as to whether it would be a benefit. To go from not wanting to do anything, to doing a mastectomy in a couple of months, has been quite a turn of events. I really need as much factual data as possible to make a logical decision. If I have a 'cancer factory' then it definitely needs to be removed. Thanks dcis809
Huh?!? I have been doing a lot of internet research and am not sure if radiation will or will not be a benefit. APBI also comes in to question as to whether it would be a benefit. To go from not wanting to do anything, to doing a mastectomy in a couple of months, has been quite a turn of events. I really need as much factual data as possible to make a logical decision. If I have a 'cancer factory' then it definitely needs to be removed. Thanks dcis809
Thanks for your response. That's a lot to think about that I haven't considered...
The bigger city people said ... Currently I have LCIS and ADH. Their pathologists obtained all 40 slides and on their report from the biospy, No calcifications identified. On their report from the partial mastectomy, No calcifications identified. The (bigger city) / breast cancer center gave me factual data. LCIS **was** thought to be cancer years ago. Now they understand it to be a 'risk factor' for cancer.
I have LCIS therefore I have a 20% chance of having breast cancer in my life time if I do nothing.
I am ER + therefore I have the option to take Tamoxifen daily for 5 yrs to knock my chances in half. If I take Tamoxifen, I have a 10% chance of having breast cancer sometime in my life. They will do a MRI yearly and a mammogram yearly. October - MRI,... April - mammogram. October - MRI,... April - mammogram. That way, I have a visual every 6 months.
Or I can have a mastectomy and/or double mastectomy and reduce my chances of having breast cancer sometime in my life to 1%. Even if you have a double mastectomy, there is a possibility of having breast cancer.
The breast cancer center wants to do a MRI because they could not accurately make a decision from the MRI that was done previously by another facility.
Now,...... I have an appointment with my PCP so he can refer me to the breast cancer center for care, instead of the breast cancer center as a 2nd opinion, so the insurance company can pay.
So,... once I get the referal, I can contact the breast cancer center and obtain another MRI. Hopefully, they can let me know what my next step is - biopsy, or something else.
The bigger city people said ... Currently I have LCIS and ADH. Their pathologists obtained all 40 slides and on their report from the biospy, No calcifications identified. On their report from the partial mastectomy, No calcifications identified. The (bigger city) / breast cancer center gave me factual data. LCIS **was** thought to be cancer years ago. Now they understand it to be a 'risk factor' for cancer.
I have LCIS therefore I have a 20% chance of having breast cancer in my life time if I do nothing.
I am ER + therefore I have the option to take Tamoxifen daily for 5 yrs to knock my chances in half. If I take Tamoxifen, I have a 10% chance of having breast cancer sometime in my life. They will do a MRI yearly and a mammogram yearly. October - MRI,... April - mammogram. October - MRI,... April - mammogram. That way, I have a visual every 6 months.
Or I can have a mastectomy and/or double mastectomy and reduce my chances of having breast cancer sometime in my life to 1%. Even if you have a double mastectomy, there is a possibility of having breast cancer.
The breast cancer center wants to do a MRI because they could not accurately make a decision from the MRI that was done previously by another facility.
Now,...... I have an appointment with my PCP so he can refer me to the breast cancer center for care, instead of the breast cancer center as a 2nd opinion, so the insurance company can pay.
So,... once I get the referal, I can contact the breast cancer center and obtain another MRI. Hopefully, they can let me know what my next step is - biopsy, or something else.
Hi--Sorry you are going through this. After a bilateral (double) mastectomy with reconstruction on Monday, I must say to you, your life and family are most important. Having said that, there is no question that if we all could just "take a pill" to cure our cancer we all would do it. Of course there is no guarantee that any treatment will make you completely "cured." Why not opt for the treatment closest to a cure. In my case it was strongly recommended by the radiologist to have a mastectomy of the right breast DCIS was scattered throughout the breast. FYI a few years ago it was diagnosed by biopsy as micro-calcifications. I was told then that I would never have to worry about those biopsied areas again. The biopsy showed the left breast had lobular neoplasia. I was told that I had a 98% chance that the left breast would become cancerous. THIS NEXT PART IS WHAT I WANT YOU TO FOCUS ON...after I had my mastectomy my surgeon said the tissue "looked" OK but pathology showed a few days later that BOTH BREASTS were COMPLETELY filled with BOTH LOBULAR and DUCTAL CARCINOMA (in-situ thank god). REMEMBER the biopsies we have are only testing the very small amount of tissue that is sampled. Biopsies can miss so much.
Having gone through a bilateral mastectomy with reconstruction all at once, I can honestly say it is not that bad. The pain is very minimal. And although I always liked my breasts, am looking forward to a new/improved set.
Many acquaintances I know have had lumpectomies first and then later had to have full mastectomies ANYWAY.
My vote is Mastectomy.
Having gone through a bilateral mastectomy with reconstruction all at once, I can honestly say it is not that bad. The pain is very minimal. And although I always liked my breasts, am looking forward to a new/improved set.
Many acquaintances I know have had lumpectomies first and then later had to have full mastectomies ANYWAY.
My vote is Mastectomy.
If they can see the place in question guided by ultrasound, mammogram or MRI a biopsy can be obtained. As long as the needle is in the right spot for a core needle biopsy you will have answers. If it misses the spot, you will have more anguish because of even less answers.
Mine got 6 hunks of invasive lobular carcinoma and what they thought was a 1.5cm mass. I then had an MRI which showed that it really was a 10 cm mass, or the entire half of my breast. And it was very fast growing. I couldn't wait for my mastectomy! But because the mass was so large, I had chemo first. That gave my overly aggressive large mass a chance to spread to my nodes.
I'm a firm believer in get it off, get it all off. But, that's MY decision for ME. I've had double mastectomies with DIEP flap reconstruction by Dr. Dellacroce in New Orleans. Best trip I ever had with wonderful results.
Alot of women are choosing prophylactic surgeries because surveillance can be nervewracking and because they are extremely high risk, either from heredity or BRCA genetic mutation. It's not for everyone though!
Mine got 6 hunks of invasive lobular carcinoma and what they thought was a 1.5cm mass. I then had an MRI which showed that it really was a 10 cm mass, or the entire half of my breast. And it was very fast growing. I couldn't wait for my mastectomy! But because the mass was so large, I had chemo first. That gave my overly aggressive large mass a chance to spread to my nodes.
I'm a firm believer in get it off, get it all off. But, that's MY decision for ME. I've had double mastectomies with DIEP flap reconstruction by Dr. Dellacroce in New Orleans. Best trip I ever had with wonderful results.
Alot of women are choosing prophylactic surgeries because surveillance can be nervewracking and because they are extremely high risk, either from heredity or BRCA genetic mutation. It's not for everyone though!
Thanks for the responses from everyone.
What I am hoping will come from all of this is that it appears there are many factors involved with breast cancer and other cancers. Again, I know Drs are very busy, and I think it is my responsibility to research and know as much as I can about my situation. Additionally, I am frustrated that I don't have the necessary facts and I am surprised that the tests that *I* think should have been done, have not been done. Or maybe, they have not been reported on *my* reports. It's still very probable that my calcifications are only calcium, as before. And if I am ER +, I may possibly be treated with hormones.
Something I thought of today, is if breast cancer is affected by estrogen and progesterone,... and estrogen and progesterone are produced by ovaries,... do I need to have my ovaries, ablated or surgically removed, instead of removing my breast?!?
LCIS may not even rear it's ugly head and become cancer for 10-20 years. I can not be comforted telling them to take it off, when I may have a possibility of only having to take medicine. Report from biopsy, before partial mastectomy "E-cadherin shows strong positive staining" which from my research, is good! Loss of E-cadherin decreases the strength of cellular adhesion within a tissue, resulting in an increase in cellular motility. We want the cells to stay together so they don't divide and grow. (abnormal fast growing).
If I present myself to the oncologist as knowledgeable and seriously concerned about my situation, maybe I won't get 'brushed off', but instead, considered for some quality discussion time. Again, I may be totally wrong and missing the very important details that I haven't researched yet and mastectomy may be my only option.
The only medical information I have on the calcifications is from the MRI 9/8/09, they are "suspicious (Intermediate: BIRADS 4b)" My research on BIRADS 4 is: Not characteristic of breast cancer, but reasonable probability of being malignant (3 to 94%); biopsy should be considered. My next question is can they do a Fine Needle Aspiration to obtain the biopsy. Mammatome, needle loc biopsy, partial mastectomy didn't work. Can they insert a needle and withdraw tissue? They have to insert a needle to do a surgical biopsy, why not insert the needle and withdraw the tissue instead of performing surgery? Less scars, less pain, less $$$$$$$$$. They perform needle aspirations on thyroids and liver. Can it be done on breasts?
What I am hoping will come from all of this is that it appears there are many factors involved with breast cancer and other cancers. Again, I know Drs are very busy, and I think it is my responsibility to research and know as much as I can about my situation. Additionally, I am frustrated that I don't have the necessary facts and I am surprised that the tests that *I* think should have been done, have not been done. Or maybe, they have not been reported on *my* reports. It's still very probable that my calcifications are only calcium, as before. And if I am ER +, I may possibly be treated with hormones.
Something I thought of today, is if breast cancer is affected by estrogen and progesterone,... and estrogen and progesterone are produced by ovaries,... do I need to have my ovaries, ablated or surgically removed, instead of removing my breast?!?
LCIS may not even rear it's ugly head and become cancer for 10-20 years. I can not be comforted telling them to take it off, when I may have a possibility of only having to take medicine. Report from biopsy, before partial mastectomy "E-cadherin shows strong positive staining" which from my research, is good! Loss of E-cadherin decreases the strength of cellular adhesion within a tissue, resulting in an increase in cellular motility. We want the cells to stay together so they don't divide and grow. (abnormal fast growing).
If I present myself to the oncologist as knowledgeable and seriously concerned about my situation, maybe I won't get 'brushed off', but instead, considered for some quality discussion time. Again, I may be totally wrong and missing the very important details that I haven't researched yet and mastectomy may be my only option.
The only medical information I have on the calcifications is from the MRI 9/8/09, they are "suspicious (Intermediate: BIRADS 4b)" My research on BIRADS 4 is: Not characteristic of breast cancer, but reasonable probability of being malignant (3 to 94%); biopsy should be considered. My next question is can they do a Fine Needle Aspiration to obtain the biopsy. Mammatome, needle loc biopsy, partial mastectomy didn't work. Can they insert a needle and withdraw tissue? They have to insert a needle to do a surgical biopsy, why not insert the needle and withdraw the tissue instead of performing surgery? Less scars, less pain, less $$$$$$$$$. They perform needle aspirations on thyroids and liver. Can it be done on breasts?
I am so sorry you're not being told what is really going on. That is sooooooo NOT right!
I'm going to suggest you contact the doctors you've seen already, ask for and GET copies of your medical records from each and from this day forward, at every doctor appointment, ask for a copy of your medical record. KEEP THEM FOR YOURSELF. Should you ever need anything, you'll have it on hand. I also collect and store in my home all of my films, MRI's, etc.
Not all doctors are like that but sadly, many are. Move on until you find the right match :)
Best wishes!
I'm going to suggest you contact the doctors you've seen already, ask for and GET copies of your medical records from each and from this day forward, at every doctor appointment, ask for a copy of your medical record. KEEP THEM FOR YOURSELF. Should you ever need anything, you'll have it on hand. I also collect and store in my home all of my films, MRI's, etc.
Not all doctors are like that but sadly, many are. Move on until you find the right match :)
Best wishes!
I can certainly understand your frustration in regard to having had all these tests and procedures, and STILL not knowing for certain what you had/have! IF cancer was found, I can't imagine tne ER/PR/HER2 status and the cell grade not being reported.
I'm glad you have a 'bigger city" consultation scheduled.
Please keep us posted in regard to what you learn.
Best wishes...
I'm glad you have a 'bigger city" consultation scheduled.
Please keep us posted in regard to what you learn.
Best wishes...
I have an appt with the 'bigger city' people on Monday for a 2nd opinion.
It's extremely difficult to make a decision that I can be comfortable with when everything changes so much. Maybe there is no definitive, when it comes to cancer. I'm really not sure that I had/have cancer. LCIS (on report) is only a 'risk factor' not even considered cancer. DCIS is what they told me. Cancer is what they told me. Atypical hyperplasia (on report) is a risk factor, according to my research. I am NOT an oncologist, but I am trying to learn all I can.
I know of a lady who has ovarian cancer. She goes for treatment/diagnosis and finds out the rate of how fast it is spreading. I don't have/had any tumors so maybe I can't obtain that information. Can they tell the rate of how fast "abnormal fast growing cells" are growing? At one time they discussed Tamoxifen for me. I researched, and asked the oncologists office if I had ER positive or ER negative. Weeks later, and still no response. Tamoxifen reacts with one but not the other. I even contacted my PCP for my reports so I can take them to the 2nd opinion on Monday. They told me to get them from the oncologist. How can I make an important decision when I can't obtain/review ALL of the facts?!?!?
It's extremely difficult to make a decision that I can be comfortable with when everything changes so much. Maybe there is no definitive, when it comes to cancer. I'm really not sure that I had/have cancer. LCIS (on report) is only a 'risk factor' not even considered cancer. DCIS is what they told me. Cancer is what they told me. Atypical hyperplasia (on report) is a risk factor, according to my research. I am NOT an oncologist, but I am trying to learn all I can.
I know of a lady who has ovarian cancer. She goes for treatment/diagnosis and finds out the rate of how fast it is spreading. I don't have/had any tumors so maybe I can't obtain that information. Can they tell the rate of how fast "abnormal fast growing cells" are growing? At one time they discussed Tamoxifen for me. I researched, and asked the oncologists office if I had ER positive or ER negative. Weeks later, and still no response. Tamoxifen reacts with one but not the other. I even contacted my PCP for my reports so I can take them to the 2nd opinion on Monday. They told me to get them from the oncologist. How can I make an important decision when I can't obtain/review ALL of the facts?!?!?
Keep in mind that MRIs are extremely sensitive and sometimes "overdiagnose" due to false positives.
To be safe you should follow through with the recommendation for a biopsy, but you can't conclude "they didn't get it before" just from the MRI report.
Best wishes...
To be safe you should follow through with the recommendation for a biopsy, but you can't conclude "they didn't get it before" just from the MRI report.
Best wishes...
My primary care physician looked at the report after the partial mastectomy.
Said no cancer. Keep an eye on it with mammogram....
3 Dr.... 3 different treatments?!?!!?
Original mammograms (May 12, and May 14, 2009)
I had a MRI on 9/8/09.
This is after mammograms, a mammatome, a mammography needle guided surgical biopsy, and a partial mastectomy.
MRI Report: "Adjacent to the seroma at the lateral margin is a
1cm area of enhancement
that correspond to the calcifications seen mammographically.
This is concerning for malignancy.
Biopsy of the calcifications is recommended."
They told me they got it, no cancer, borders are clear.
Now I find out they didn't get it!!!
I had calcifications 4 yrs ago and they were just calcium.
I'm fed up!!!
Said no cancer. Keep an eye on it with mammogram....
3 Dr.... 3 different treatments?!?!!?
Original mammograms (May 12, and May 14, 2009)
I had a MRI on 9/8/09.
This is after mammograms, a mammatome, a mammography needle guided surgical biopsy, and a partial mastectomy.
MRI Report: "Adjacent to the seroma at the lateral margin is a
1cm area of enhancement
that correspond to the calcifications seen mammographically.
This is concerning for malignancy.
Biopsy of the calcifications is recommended."
They told me they got it, no cancer, borders are clear.
Now I find out they didn't get it!!!
I had calcifications 4 yrs ago and they were just calcium.
I'm fed up!!!
You need to see another doctor for sure! Get second opinions on your biopsy slides from another lab. Also, find a doctor that can explain everythig to you. You need to have as much information as possible - lots of books out there that will help you. Also, get as much info from the Cancer Society and other cancer resource organizations. They are great! You can get any information you need from them -- I actually thinkt their brochures are more informative than some of the books I read. Don't rely on just the intenet - the library is a good place to get the books. I checked out about 12 books and read the sections that I was interested in.....take your time and get informed. It will pay off for you later. Find a doctor that is able to explain things to you so you understand what is going on...I saw some really bad doctors before I found a good one. See more than two doctor if you have to - this is extremely emotional and scary and you need to trust that your doctors are giving you accurate, compassionate information.
Well, first of all having or not having a mastectomy has absolutely NOTHING to do with having children !!! If this is truly DCIS then the ductal cancer is termed INSITU which means it was completely contained within the duct with no invasion of surrounding tissue. I think the best advice I can give you at this time is to get a completely independant second opinion regarding the films as well as the slides from the biopsies. For the average citizen the internet can offer some very confusing information most of the time ..... so many factors have to be taken into account to give an accurate opinion and each and every case is different. Regards .....
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