I think not long ago someone shared the link of a podcast regarding dormant cancer cells. During the interview, that doctor mentioned that with ER+, the recurrence risk increases with time. @meeshodge Based on your treatments, can I assumed that your cancer stage is 0 (DCIS)? And your sentinel lymph node biopsy is negative? Then it’s very rare for DCIS to metastacize.
Once we’re diagnosed with cancer, we can never be sure it won’t come back. I put it on the back burner and go live my life or whatever left of it.
I also have been recently diagnosed with DCIS, HR + E & P. I am 78. The biopsy said it is High-grade, G3, and that comedonecrosis is present. One oncologist told me that meant the cancer cells in the duct are aggressive. I've had two opinions. One doctor recommended a bilateral mastectomy and the other thought I should have a lumpectomy followed by hormone blockers. It sounds like it would be better to have bilateral mastectomies because then there are no side effects from the hormone blockers. I am athletic and am nervous about the surgeries. If I could be playing tennis and golf 2 months down the road, no problem, but it sounds like this is not EASY! I am terrified of losing my ability to play sports and being in pain for months. I am already flat chested, but I want reconstruction. Is the reconstruction that causes the problems in healing?
I did not have chemo, radiation or any other treatments after my DMX. I did have clear margins. I think that's why, after 5 years, chance of recurrence is much less. If it were going to spread, it would within those 5 years.
I wish I would’ve have let a surgeon talk me out of having A double mastectomy. Ended up having a lumpectomy to remove two tumors and seven lymph nodes December 2021. Now exactly 3 years later my liquid biopsy came back positive for circulating tumor DNA in my blood. now I’m talking about double mastectomy again but we don’t even know if that’s where the shedding in my bloodstream of the circulating DNA is coming from it scares me to think it could be coming from another organ that I don’t know. I’m really scared about having the surgery too though
I also have been recently diagnosed with DCIS, HR + E & P. I am 78. The biopsy said it is High-grade, G3, and that comedonecrosis is present. One oncologist told me that meant the cancer cells in the duct are aggressive. I've had two opinions. One doctor recommended a bilateral mastectomy and the other thought I should have a lumpectomy followed by hormone blockers. It sounds like it would be better to have bilateral mastectomies because then there are no side effects from the hormone blockers. I am athletic and am nervous about the surgeries. If I could be playing tennis and golf 2 months down the road, no problem, but it sounds like this is not EASY! I am terrified of losing my ability to play sports and being in pain for months. I am already flat chested, but I want reconstruction. Is the reconstruction that causes the problems in healing?
@ppeg most of us w/ ER+ cancers who have double mastectomies also do hormonal meds. Are you sure the doctor recommending bilateral mastectomy didn't just neglect to mention those meds? Since that issue seems to be a factor in your decision-making, I would contact that doctor and ask.
I went flat after my double mastectomy. No problems at all. After a few weeks went back to normal activities.
@ppeg most of us w/ ER+ cancers who have double mastectomies also do hormonal meds. Are you sure the doctor recommending bilateral mastectomy didn't just neglect to mention those meds? Since that issue seems to be a factor in your decision-making, I would contact that doctor and ask.
I went flat after my double mastectomy. No problems at all. After a few weeks went back to normal activities.
I also have been recently diagnosed with DCIS, HR + E & P. I am 78. The biopsy said it is High-grade, G3, and that comedonecrosis is present. One oncologist told me that meant the cancer cells in the duct are aggressive. I've had two opinions. One doctor recommended a bilateral mastectomy and the other thought I should have a lumpectomy followed by hormone blockers. It sounds like it would be better to have bilateral mastectomies because then there are no side effects from the hormone blockers. I am athletic and am nervous about the surgeries. If I could be playing tennis and golf 2 months down the road, no problem, but it sounds like this is not EASY! I am terrified of losing my ability to play sports and being in pain for months. I am already flat chested, but I want reconstruction. Is the reconstruction that causes the problems in healing?
I was back to work (desk job) 4 weeks post op. I flew home 2 days after my DMX. I had sentinel node removal and that was what was most uncomfortable. My surgery was August 23 2024. It was actually an easy recovery and I can do anything I want now. Love not having to wear a bra!
@meeshodge I was thrown by the "DXsion"! I looked up the DCISionRT (Prelude Dx) which is new since my cancer. There is an Oncotype DCIS but the DCISionRT gives info on whether radiation is of benefit, which is great. The Oncotype gives info on how much risk can be reduced with hormonal meds but generally it is around 50%.
Glad to see research has come up with a test on the benefit of radiation!
I can see that the top score is 10 so with 9.2. Did you do radiation? I can see you declined tamoxifen and read your reasons why.
@meeshodge I was thrown by the "DXsion"! I looked up the DCISionRT (Prelude Dx) which is new since my cancer. There is an Oncotype DCIS but the DCISionRT gives info on whether radiation is of benefit, which is great. The Oncotype gives info on how much risk can be reduced with hormonal meds but generally it is around 50%.
Glad to see research has come up with a test on the benefit of radiation!
I can see that the top score is 10 so with 9.2. Did you do radiation? I can see you declined tamoxifen and read your reasons why.
I should have taken the time to proofread! There is also an online questionnaire that comes up with a risk/likelihood of recurrence. Mine was low without any radiation/chemo/drugs.
I did no radiation or other pre or post op treatments.
Let me see if I can find a link to the questionnaire. My oncologist at Mayo used it.
@meeshodge I was thrown by the "DXsion"! I looked up the DCISionRT (Prelude Dx) which is new since my cancer. There is an Oncotype DCIS but the DCISionRT gives info on whether radiation is of benefit, which is great. The Oncotype gives info on how much risk can be reduced with hormonal meds but generally it is around 50%.
Glad to see research has come up with a test on the benefit of radiation!
I can see that the top score is 10 so with 9.2. Did you do radiation? I can see you declined tamoxifen and read your reasons why.
Connect
Connect
Like
Helpful
Hug
I think not long ago someone shared the link of a podcast regarding dormant cancer cells. During the interview, that doctor mentioned that with ER+, the recurrence risk increases with time.
@meeshodge Based on your treatments, can I assumed that your cancer stage is 0 (DCIS)? And your sentinel lymph node biopsy is negative? Then it’s very rare for DCIS to metastacize.
Once we’re diagnosed with cancer, we can never be sure it won’t come back. I put it on the back burner and go live my life or whatever left of it.
-
Like -
Helpful -
Hug
1 ReactionI also have been recently diagnosed with DCIS, HR + E & P. I am 78. The biopsy said it is High-grade, G3, and that comedonecrosis is present. One oncologist told me that meant the cancer cells in the duct are aggressive. I've had two opinions. One doctor recommended a bilateral mastectomy and the other thought I should have a lumpectomy followed by hormone blockers. It sounds like it would be better to have bilateral mastectomies because then there are no side effects from the hormone blockers. I am athletic and am nervous about the surgeries. If I could be playing tennis and golf 2 months down the road, no problem, but it sounds like this is not EASY! I am terrified of losing my ability to play sports and being in pain for months. I am already flat chested, but I want reconstruction. Is the reconstruction that causes the problems in healing?
I wish I would’ve have let a surgeon talk me out of having A double mastectomy. Ended up having a lumpectomy to remove two tumors and seven lymph nodes December 2021. Now exactly 3 years later my liquid biopsy came back positive for circulating tumor DNA in my blood. now I’m talking about double mastectomy again but we don’t even know if that’s where the shedding in my bloodstream of the circulating DNA is coming from it scares me to think it could be coming from another organ that I don’t know. I’m really scared about having the surgery too though
-
Like -
Helpful -
Hug
2 Reactions@ppeg most of us w/ ER+ cancers who have double mastectomies also do hormonal meds. Are you sure the doctor recommending bilateral mastectomy didn't just neglect to mention those meds? Since that issue seems to be a factor in your decision-making, I would contact that doctor and ask.
I went flat after my double mastectomy. No problems at all. After a few weeks went back to normal activities.
In my case, it was offered by the first surgeon I met with. I denied. Second opinion, it was never mentioned.
I was back to work (desk job) 4 weeks post op. I flew home 2 days after my DMX. I had sentinel node removal and that was what was most uncomfortable. My surgery was August 23 2024. It was actually an easy recovery and I can do anything I want now. Love not having to wear a bra!
DCISionRT (PreludeDx) it is a PREDICTIVE test to guess the recurrence rate.
@meeshodge I was thrown by the "DXsion"! I looked up the DCISionRT (Prelude Dx) which is new since my cancer. There is an Oncotype DCIS but the DCISionRT gives info on whether radiation is of benefit, which is great. The Oncotype gives info on how much risk can be reduced with hormonal meds but generally it is around 50%.
Glad to see research has come up with a test on the benefit of radiation!
I can see that the top score is 10 so with 9.2. Did you do radiation? I can see you declined tamoxifen and read your reasons why.
I should have taken the time to proofread! There is also an online questionnaire that comes up with a risk/likelihood of recurrence. Mine was low without any radiation/chemo/drugs.
I did no radiation or other pre or post op treatments.
Let me see if I can find a link to the questionnaire. My oncologist at Mayo used it.
This is the link my oncologist at Mayo used:
https://nomograms.mskcc.org/breast/