Hello I’m also a new member @debraw. I’m 70 yrs old and in excellent health besides this new haunting diagnosis . Suspected Paget’s 1yr ago with negative mammograms and ultra sounds ( no biopsy then). Confirmed Paget’s disease of the nipple ( Jan 2023) non-invasive with surgery scheduled for April 7 ( nipple and areola removal/ lumpectomy) MRI does not show any mass behind or lymph involvement. Pathology after surgery will determine my decisions forward . Drs say I will need radiation and EI. No breast cancer on my mother’s side of the family however on my fathers side yes ( Aunts, cousins, 2nd cousins)but I was always told that fathers side doesn’t matter. I’ve always had “dense” breast tissue and small benign cysts.
I’m comfortable with having the surgery to remove the cancer but totally freaked out by getting radiation and having to take EIs. I’ve always tried hard to keep toxins and chemicals out of my body ( but I guess it didn’t make any difference I still got breast cancer). I’m strongly considering no radiation and trying the EI. Do I really need radiation or is that over-treatment?? Trying to find the statistics for that decision. At this age I’d be happy with 10 healthy more yrs to live an active lifestyle rather than choose to be sick with radiation and the EIs. Currently I’m in the best health, very active and feeling strong and energetic. Doing my best to stay positive but still in shock and at times feel hopeless that my healthy lifestyle didn’t really matter anyway. Cancer is the luck of the draw.
Thank you for connecting us. It’s amazing to me how every diagnosis/situation is so uniquely different. I’ve been told that removal of my left nipple and areola will be necessary and probably radiation but that will depend on the pathology after surgery. Also EI after surgery for 5 yrs.
Since I’m told it’s stage zero, non invasive and no other mass or lymph involvement detected on the mri that “I’m lucky” (??) I caught it early ( 1 yr ago it was suspected)
I’m interested in knowing if radiation is over- treatment for my age & situation and if the risks and side effects of radiation are worth it. Im considering not having radiation and just trying the EI. I’m 70 yrs old. What does the research say about cancer return rates with and without radiation? I read that it’s 9% return with radiation and 19% without radiation and that it might not be necessary for someone my age and situation to have radiation or chemo. . I’ve also been told mastectomy is not necessary in my case even though I’m willing to have both removed if it eliminates my risk of cancer returning. Is there any guarantee if both are removed? If it does come back then my choice would definitely be to remove both. Every situation is so different how can there even be the same “protocol” for everyone?
15 yrs ago My friend had lumpectomy/radiation/chemo/ EI and now cancer just came back in the opposite breast and she just had a mastectomy on the new side but wanted both breasts removed . She was told that the since the first breast already had radiation and chemo 15 yrs ago that it could not be removed because the radiation thins the chest wall.
I’m so confused that I don’t want to think about it any more. Just get rid of the cancer. My surgery is in 2 weeks. I’ll just have to wait for the pathology to meet the oncologist to see what he/she says. I’m leaning toward NO RADIATION…wait and see if cancer returns the chop them both off!
I am nearing 68 years old and there was evidence of the cancer about 9 months ago but I thought it was related to a surgery I had on my breast in May. I was seeing the dermatologist for another reason and asked her to look at my breast, which is why it was diagnosed by my dermatologist. Because I do have a lump in the breast, the surgeon has determined I likely have stage 1. I guess I’m just surprised that further information is not needed before surgery. I understand that there is not one protocol for cancer but are there others who had surgery before knowing more about the stage and how invasive the cancer is? I am seriously considering having both breasts removed. I’m just anxious about moving forward without complete information. Is that common for cancer diagnoses?
I am a new member (@ahs7755) and I was recently diagnosed with Paget’s Breast Cancer. The diagnosis was made from evaluation of a skin shaving from the nipple of my right breast. After I received the diagnosis I felt a lump in that same breast. Because the biopsy was done by my dermatologist, the diagnosis of Paget’s was available when I saw the surgeon. At the first meeting the surgeon said that the best course of action was a mastectomy. The surgeon indicated that a lumpectomy was another option but that it would result in a donut shaped breast that would not be aesthetically pleasing. Additionally, the surgeon said that further biopsy of the lump or information regarding the stage or infiltration of the cancer would not change the recommendation. The additional testing would be done on the breast tissue and lump following the mastectomy. Is this the standard of care for Paget’s or would additional information about the cancer be important before having a mastectomy? I had an MRI today and expect additional information will come from that. Additionally, I am scheduled to see the Medical Oncologist 4/11 and the Radiation Oncologist 4/13.
After my first nipple biopsy confirmed pagets, I was scheduled for biopsy on the other two growths in same breast. From what I understand, Pagets is a type if skin cancer in nipple. In my case further biopsy of other breast growths determined a separate diganosis of DCIS. Invasive ductal carsinoma of breast. It is high grade w/necrosis in one of the growths. The biopsy also provided estrogen levels in which I showed a low positive antibody. This might determine the type of chemo strategies and if they need to check my ovaries for potential issues. I have MRI with contrast of both breasts in interim to see if any smaller lesions or missed areas in either breast are present. My doctor ordered a genetic test which also can determine type of chemo. Hope this helps @ahs7755 It can be confusing but my Dr. has been on a fast track with biopsies, diagnosing and further testing prior to surgury (greatful for) and I'm learning as much as I can about testing, diagnosis and procedures and asking questions. Seek second opinion if needed is also an option although I have confidence in the science with tests and in my Dr. To determine the course of TX. I know I'm looking at surgury but good to know all the info before proceeding. It's been only three weeks so a big learning curve.
Thank you for connecting us. It’s amazing to me how every diagnosis/situation is so uniquely different. I’ve been told that removal of my left nipple and areola will be necessary and probably radiation but that will depend on the pathology after surgery. Also EI after surgery for 5 yrs.
Since I’m told it’s stage zero, non invasive and no other mass or lymph involvement detected on the mri that “I’m lucky” (??) I caught it early ( 1 yr ago it was suspected)
I’m interested in knowing if radiation is over- treatment for my age & situation and if the risks and side effects of radiation are worth it. Im considering not having radiation and just trying the EI. I’m 70 yrs old. What does the research say about cancer return rates with and without radiation? I read that it’s 9% return with radiation and 19% without radiation and that it might not be necessary for someone my age and situation to have radiation or chemo. . I’ve also been told mastectomy is not necessary in my case even though I’m willing to have both removed if it eliminates my risk of cancer returning. Is there any guarantee if both are removed? If it does come back then my choice would definitely be to remove both. Every situation is so different how can there even be the same “protocol” for everyone?
15 yrs ago My friend had lumpectomy/radiation/chemo/ EI and now cancer just came back in the opposite breast and she just had a mastectomy on the new side but wanted both breasts removed . She was told that the since the first breast already had radiation and chemo 15 yrs ago that it could not be removed because the radiation thins the chest wall.
I’m so confused that I don’t want to think about it any more. Just get rid of the cancer. My surgery is in 2 weeks. I’ll just have to wait for the pathology to meet the oncologist to see what he/she says. I’m leaning toward NO RADIATION…wait and see if cancer returns the chop them both off!
Oh my goodness, how overwhelmed you must be without all the information and everybody throwing everything at you. I know this feeling, I truly have been there with my own breast cancer. 💔
Please try to breathe a bit. I know this is such a terrible time but can you just tell yourself that you can wait until all the information is gathered before you decide on the next treatment.
Since I had my initial cancer diagnosis 18 years ago, I can tell you 15 years since your friend was diagnosed was a lifetime ago in term of breast cancer research and improvements in treatments, especially radiation.
We have so many advancements in treatments it feels like I was treated during the bad old days.
Do you feel like you trust the team of doctors helping you now? Do you have support that you can sit and talk and work through some of the hard choices and emotions?
Oh my goodness, how overwhelmed you must be without all the information and everybody throwing everything at you. I know this feeling, I truly have been there with my own breast cancer. 💔
Please try to breathe a bit. I know this is such a terrible time but can you just tell yourself that you can wait until all the information is gathered before you decide on the next treatment.
Since I had my initial cancer diagnosis 18 years ago, I can tell you 15 years since your friend was diagnosed was a lifetime ago in term of breast cancer research and improvements in treatments, especially radiation.
We have so many advancements in treatments it feels like I was treated during the bad old days.
Do you feel like you trust the team of doctors helping you now? Do you have support that you can sit and talk and work through some of the hard choices and emotions?
Thank you Chris for your response and reminding me to take a breather. However, On top of all this cancer diagnosis I’ve been working on composing the eulogy for my fathers interment which is on Friday. I know that’s why I was feeling so overwhelmed yesterday because I wasn’t finished organizing all my thoughts and notes. I finally finished my final draft today at 3pm and headed straight to the therapy pool and then did a few laps followed by the steam room . I feel much better now and I have 5 days to practice so it’s all good. I’m trying hard not to think about the cancer now as I’m busy with preparing for our family celebration and packing to fly to Florida on Wednesday. I find that keeping myself busy and continuing my exercise routines helps me stop obsessing about what I’ll do after surgery because really I don’t have to make any decisions until the surgery is over and the pathology is complete. The waiting has been anxiety producing and all the information is confusing and overwhelming. Thanks for your virtual support and hug Chris I felt it
Paget's disease of the nipple is a rare form of breast cancer that affects the skin of the nipple and areola. It can also affect other areas of the breast. Symptoms may include itching, redness, scaling, and discharge from the nipple. If you are experiencing any of these symptoms, it's important to see a healthcare provider for evaluation. Diagnosis of Paget's disease may involve a physical exam, mammogram, biopsy, or other imaging tests. Treatment typically involves surgery to remove the affected tissue, followed by radiation therapy and/or chemotherapy.
This is SequoiaTree just checking in. I started with the Pagets/Ductal diagnosis the end of Feb. and have two other growths outside the duct and one of 2 lymph nodes appearing were biopsied with all testing positive. (Triple neg- stage III). On the plus side, the PET scan came back clear from other areas in my body which has provided me with some relief at this juncture. I have a portacath in place and will start Chemo this week and every 3 weeks for 6 rounds total. Following this, I will have another PET scan followed by mastectomy of both breasts with a flat chest contour (about 6mo. from now). Although I have a family history of my mother, aunt and cousin with breast cancer, the genetics testing showed no hereditary factors to my cancer/genes. My Oncology doctor and medical team through the Bennett Breast Center and CMMC have been outstanding which is of great comfort to my anxiety. The Mayo Clinic Forum has been my go to for daily information and support throughout the course. Thank you to everyone for caring and sharing.
This is SequoiaTree just checking in. I started with the Pagets/Ductal diagnosis the end of Feb. and have two other growths outside the duct and one of 2 lymph nodes appearing were biopsied with all testing positive. (Triple neg- stage III). On the plus side, the PET scan came back clear from other areas in my body which has provided me with some relief at this juncture. I have a portacath in place and will start Chemo this week and every 3 weeks for 6 rounds total. Following this, I will have another PET scan followed by mastectomy of both breasts with a flat chest contour (about 6mo. from now). Although I have a family history of my mother, aunt and cousin with breast cancer, the genetics testing showed no hereditary factors to my cancer/genes. My Oncology doctor and medical team through the Bennett Breast Center and CMMC have been outstanding which is of great comfort to my anxiety. The Mayo Clinic Forum has been my go to for daily information and support throughout the course. Thank you to everyone for caring and sharing.
Hi Debbie2721,
I had a rawness on my nipple that would not heal. Light discharge. Found two (maybe part of one lump) in the ductal area that were biopsied and not estrogen/homone related. It is HER 2 related and I have two lymph nodes found in my armit area (so a second cancer diagnosis called tripple negative breast cancer). All that said and done, the good new is that my PET scan showed no other growth cells in other parts of my body other than breast and armpit area. Everyone seems to have different symptoms, diagnosis and management. I feel I am on the right course of treatment after extensive testing and biopsies with markers placed in each area. I will need a mastectomy after the Chemo. Chemo first as it will let us know if we are on the right track with the right meds to shrink and hopefully eradicate what I do have before surgury and should there be problems in the future in other areas. I am doing well after my first big infusion of 4 chemo meds plus steriods and anti-nausea meds etc.. They know so much more than when my mother was diagnosed in 1970. I am hopeful and staying the course one procedure at a time. Thank you for reaching out, anytime. Kim Sequoia
Kim,
I pray that your treatments continue go well and that you do not have terrible side-effects. You seem to have a great attitude and that is important.
Debbie
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High dose of vitamin C intravenos instead of radiation.
I am nearing 68 years old and there was evidence of the cancer about 9 months ago but I thought it was related to a surgery I had on my breast in May. I was seeing the dermatologist for another reason and asked her to look at my breast, which is why it was diagnosed by my dermatologist. Because I do have a lump in the breast, the surgeon has determined I likely have stage 1. I guess I’m just surprised that further information is not needed before surgery. I understand that there is not one protocol for cancer but are there others who had surgery before knowing more about the stage and how invasive the cancer is? I am seriously considering having both breasts removed. I’m just anxious about moving forward without complete information. Is that common for cancer diagnoses?
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1 ReactionAfter my first nipple biopsy confirmed pagets, I was scheduled for biopsy on the other two growths in same breast. From what I understand, Pagets is a type if skin cancer in nipple. In my case further biopsy of other breast growths determined a separate diganosis of DCIS. Invasive ductal carsinoma of breast. It is high grade w/necrosis in one of the growths. The biopsy also provided estrogen levels in which I showed a low positive antibody. This might determine the type of chemo strategies and if they need to check my ovaries for potential issues. I have MRI with contrast of both breasts in interim to see if any smaller lesions or missed areas in either breast are present. My doctor ordered a genetic test which also can determine type of chemo. Hope this helps @ahs7755 It can be confusing but my Dr. has been on a fast track with biopsies, diagnosing and further testing prior to surgury (greatful for) and I'm learning as much as I can about testing, diagnosis and procedures and asking questions. Seek second opinion if needed is also an option although I have confidence in the science with tests and in my Dr. To determine the course of TX. I know I'm looking at surgury but good to know all the info before proceeding. It's been only three weeks so a big learning curve.
-
Like -
Helpful -
Hug
3 ReactionsOh my goodness, how overwhelmed you must be without all the information and everybody throwing everything at you. I know this feeling, I truly have been there with my own breast cancer. 💔
Please try to breathe a bit. I know this is such a terrible time but can you just tell yourself that you can wait until all the information is gathered before you decide on the next treatment.
Since I had my initial cancer diagnosis 18 years ago, I can tell you 15 years since your friend was diagnosed was a lifetime ago in term of breast cancer research and improvements in treatments, especially radiation.
We have so many advancements in treatments it feels like I was treated during the bad old days.
Do you feel like you trust the team of doctors helping you now? Do you have support that you can sit and talk and work through some of the hard choices and emotions?
-
Like -
Helpful -
Hug
5 ReactionsThank you Chris for your response and reminding me to take a breather. However, On top of all this cancer diagnosis I’ve been working on composing the eulogy for my fathers interment which is on Friday. I know that’s why I was feeling so overwhelmed yesterday because I wasn’t finished organizing all my thoughts and notes. I finally finished my final draft today at 3pm and headed straight to the therapy pool and then did a few laps followed by the steam room . I feel much better now and I have 5 days to practice so it’s all good. I’m trying hard not to think about the cancer now as I’m busy with preparing for our family celebration and packing to fly to Florida on Wednesday. I find that keeping myself busy and continuing my exercise routines helps me stop obsessing about what I’ll do after surgery because really I don’t have to make any decisions until the surgery is over and the pathology is complete. The waiting has been anxiety producing and all the information is confusing and overwhelming. Thanks for your virtual support and hug Chris I felt it
-
Like -
Helpful -
Hug
4 ReactionsPaget's disease of the nipple is a rare form of breast cancer that affects the skin of the nipple and areola. It can also affect other areas of the breast. Symptoms may include itching, redness, scaling, and discharge from the nipple. If you are experiencing any of these symptoms, it's important to see a healthcare provider for evaluation. Diagnosis of Paget's disease may involve a physical exam, mammogram, biopsy, or other imaging tests. Treatment typically involves surgery to remove the affected tissue, followed by radiation therapy and/or chemotherapy.
-
Like -
Helpful -
Hug
2 ReactionsThis is SequoiaTree just checking in. I started with the Pagets/Ductal diagnosis the end of Feb. and have two other growths outside the duct and one of 2 lymph nodes appearing were biopsied with all testing positive. (Triple neg- stage III). On the plus side, the PET scan came back clear from other areas in my body which has provided me with some relief at this juncture. I have a portacath in place and will start Chemo this week and every 3 weeks for 6 rounds total. Following this, I will have another PET scan followed by mastectomy of both breasts with a flat chest contour (about 6mo. from now). Although I have a family history of my mother, aunt and cousin with breast cancer, the genetics testing showed no hereditary factors to my cancer/genes. My Oncology doctor and medical team through the Bennett Breast Center and CMMC have been outstanding which is of great comfort to my anxiety. The Mayo Clinic Forum has been my go to for daily information and support throughout the course. Thank you to everyone for caring and sharing.
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Like -
Helpful -
Hug
1 ReactionWhat were your symptoms for Pagets? I read it is quite rare. Prayers for the very best outcome for you in your BC treatments.
Hi Debbie2721,
I had a rawness on my nipple that would not heal. Light discharge. Found two (maybe part of one lump) in the ductal area that were biopsied and not estrogen/homone related. It is HER 2 related and I have two lymph nodes found in my armit area (so a second cancer diagnosis called tripple negative breast cancer). All that said and done, the good new is that my PET scan showed no other growth cells in other parts of my body other than breast and armpit area. Everyone seems to have different symptoms, diagnosis and management. I feel I am on the right course of treatment after extensive testing and biopsies with markers placed in each area. I will need a mastectomy after the Chemo. Chemo first as it will let us know if we are on the right track with the right meds to shrink and hopefully eradicate what I do have before surgury and should there be problems in the future in other areas. I am doing well after my first big infusion of 4 chemo meds plus steriods and anti-nausea meds etc.. They know so much more than when my mother was diagnosed in 1970. I am hopeful and staying the course one procedure at a time. Thank you for reaching out, anytime. Kim Sequoia
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Hug
2 ReactionsKim,
I pray that your treatments continue go well and that you do not have terrible side-effects. You seem to have a great attitude and that is important.
Debbie
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