DCIS and recurrence

terri805

I was just wondering how many of you have been dx with DCIS and had a lumpectomy, rads, Arimidex and then later had a recurrence? My dr said that having a lumpectomy,rads and Arimidex treatment was just as effective as having a mastectomy and that the chance of recurrence was as much as someone being dx that has never had it before. Any thoughts about this?

GreeneyedGirl

Hi Terri~
I was diagnosed in 06 with dcis, it was contained, a stage 0. I had a lumpectomy and 33 radiation treatments. I was told~ a 4% chance of re-occurrence. Well, someone falls into that 4%~ and it was me, 2 years later. So, I wound up having a mastectomy on my left breast~At the time of my initial diagnosis I based my decisions on the information at hand. There was/is no family history~ I cannot change the course of what occurred but, if I could have foreseen what was ahead~ perhaps my decision would have been different. But, we can't see what is ahead. I don't mean to confuse you. Just really think about your options. And if some option you think of is not offered to you~ASK if it can be. Be very active in your health care.
I hope my information has helped in some way.
Melanie

crselby

4%, 14%, 8%?????
Hi Terri. I had a lumpectomy for DCIS in July 2009, had brachytherapy rads, and am on Tamoxifen. My radiation oncologist said the chance of recurrance, without Tamoxifen would be about 4%. Taking Tamoxifen would reduce that to 2%. Both he and I felt that the side effects of Tamoxifen weren't worth the 2% reduction, so at first I refused it. Then I did some online research and saw the oncologist again. He said the fact that my cancer was grade 3 pushed the chance of recurrance to 14%. Wow. Much higher. So Tamoxifen would reduce that to about 8%. Eight in 100 women would have a recurrance if they had all my factors. Hmm. I started taking the Tamoxifen. When I next talked to my radiation oncologist, he said, it's a good idea to go with what your feelings tell you to do. If you think the grade 3 is trouble, then take the Tamoxifen. Not very scientific, but my radiation oncologist is considered a god among rad oncs, so I'll continue with the Tamoxifen.

I'll be interested to hear from other women about this!
~~Connie~~

Sharon_D

GreeneyedGirl said:

Hi Terri~
I was diagnosed in 06 with dcis, it was contained, a stage 0. I had a lumpectomy and 33 radiation treatments. I was told~ a 4% chance of re-occurrence. Well, someone falls into that 4%~ and it was me, 2 years later. So, I wound up having a mastectomy on my left breast~At the time of my initial diagnosis I based my decisions on the information at hand. There was/is no family history~ I cannot change the course of what occurred but, if I could have foreseen what was ahead~ perhaps my decision would have been different. But, we can't see what is ahead. I don't mean to confuse you. Just really think about your options. And if some option you think of is not offered to you~ASK if it can be. Be very active in your health care.
I hope my information has helped in some way.
Melanie

Hi Terri
Leading up to my surgery in July 2009, my dr really leaned toward a lumpectomy but my husband and I discussed it and we didn't want to risk the chance of it coming back, so I chose mastectomy. As it turned out, there were 3 cancer sights and it was in 1 lymph node, so I really had no choice, but I didn't want to risk it and I am glad I took the aggressive approach. I'm 62. If I was younger, it might make more of a difference to me, but I chose not to reconstruct.

By the way, my dr told me that 4% of his patients that had the condition I had, actually tested positive for cancer. I was in that lucky 4% also!

gpercle

Mastectomy vs. Lumpectomy
Hi. I was diagnosed last May at the age of 39 with bc. No sign family history. I opted for the mastectomy (right only), since breast mri, etc. did not indicate any cancer in the left. I also had reconstruction at the same time. I am soooooo thankful that I made that choice - when they removed the breast tissue and sent it off to the oncotype dx pathologists, they found another area (away from the known tumor) with microscopic cancer cells that did not show up on the mri, etc. If I would have chosen the lumpectomy, I would still have cancer in me. And, thank goodness it did not spread to my lymph nodes. I went through four cycles of chemo and now take tamoxifen. I also recently had a hysterectomy since my ovaries 'came back with a vengeance' and my estrogen levels were sky high! My doctor and I agreed that it was the best choice. Anyway, I was not considered high risk and do not carry the genes for breast or ovarian cancer, but I am totally comfortable with my decision to do a mastectomy!

mimivac

Terri,
Your doctor is right that lumpectomy and rads is as effective as mastectomy. Of course there are those who have a recurrence, but there are many more who do not. I had stage IIa triple negative breast cancer, grade 3, and choose to have a lumpectomy, chemo, and radiation. I do not regret my decision and won't even if I have a recurrence since mastectomy does not eliminate your chance of recurrence to 0. Do your research and then go with your gut. Good luck.

Mimi

jk1952

mimivac said:

Terri,
Your doctor is right that lumpectomy and rads is as effective as mastectomy. Of course there are those who have a recurrence, but there are many more who do not. I had stage IIa triple negative breast cancer, grade 3, and choose to have a lumpectomy, chemo, and radiation. I do not regret my decision and won't even if I have a recurrence since mastectomy does not eliminate your chance of recurrence to 0. Do your research and then go with your gut. Good luck.

Mimi

I agree with everyone else

I agree with everyone else that you need to do what you feel is right for you. In 2000, at age 47, I had a lumpectomy with radiation and started on Tamoxifen but had to stop due to blood clots. At the time of the biopsy, it was determined that I had DCIS, but when the lumpectomy was done, I also had a small amount of invasive cancer.

In 2009, DCIS was discovered in the same breast and I chose a bilateral mastectomy with immediate DIEP reconstruction. The pathology report showed the DCIS that had been found on the MRI and another spot quite a ways away.

In each case, I feel that the treatment that I chose was the right one for me at the time, and I've had peace about it.

Joyce

terri805

jk1952 said:

I agree with everyone else

I agree with everyone else that you need to do what you feel is right for you. In 2000, at age 47, I had a lumpectomy with radiation and started on Tamoxifen but had to stop due to blood clots. At the time of the biopsy, it was determined that I had DCIS, but when the lumpectomy was done, I also had a small amount of invasive cancer.

In 2009, DCIS was discovered in the same breast and I chose a bilateral mastectomy with immediate DIEP reconstruction. The pathology report showed the DCIS that had been found on the MRI and another spot quite a ways away.

In each case, I feel that the treatment that I chose was the right one for me at the time, and I've had peace about it.

Joyce

I am feeling somewhat nervous
I was feeling pretty confident about my treatment with the hopes of after rads I would be cancer free but after reading posts that in some cases cancer was found far away from the original siting when a mastectomy was done and pathology found more cancer in the breast removed. I thought that cancer would show up on mri's,mammo's, and ultra sound? So now I have to worry that more could be hiding in my breast somewhere that wasn't seen? Greatttt! I thought that if it wasn't seen then it wasn't there. I feel really stupid now for thinking after rads that I would be cancer free but maybe not. Hmmm... this burst my bubble.Just like when I was told that microcalcifications are not cancer 80 to 85% of the time. Well here I am in that 15 to 20 %. I guess I will just have to suck it up and not worry or dwell on the fact that there is a chance it could come back or that there was more than was seen.

terri805

GreeneyedGirl said:

Hi Terri~
I was diagnosed in 06 with dcis, it was contained, a stage 0. I had a lumpectomy and 33 radiation treatments. I was told~ a 4% chance of re-occurrence. Well, someone falls into that 4%~ and it was me, 2 years later. So, I wound up having a mastectomy on my left breast~At the time of my initial diagnosis I based my decisions on the information at hand. There was/is no family history~ I cannot change the course of what occurred but, if I could have foreseen what was ahead~ perhaps my decision would have been different. But, we can't see what is ahead. I don't mean to confuse you. Just really think about your options. And if some option you think of is not offered to you~ASK if it can be. Be very active in your health care.
I hope my information has helped in some way.
Melanie

what do you
hi melanie,
what do you think that you might have done differently had you foreseen what was ahead? I just finished my first week of rads and then i am suppose to take arimidex.

jk1952

terri805 said:

I am feeling somewhat nervous
I was feeling pretty confident about my treatment with the hopes of after rads I would be cancer free but after reading posts that in some cases cancer was found far away from the original siting when a mastectomy was done and pathology found more cancer in the breast removed. I thought that cancer would show up on mri's,mammo's, and ultra sound? So now I have to worry that more could be hiding in my breast somewhere that wasn't seen? Greatttt! I thought that if it wasn't seen then it wasn't there. I feel really stupid now for thinking after rads that I would be cancer free but maybe not. Hmmm... this burst my bubble.Just like when I was told that microcalcifications are not cancer 80 to 85% of the time. Well here I am in that 15 to 20 %. I guess I will just have to suck it up and not worry or dwell on the fact that there is a chance it could come back or that there was more than was seen.

Terri, I hope that my

Terri, I hope that my comments didn't scare you. Please remember that the chances of a healthy life post breast cancer treatment are much higher than the chances of a recurrence. And, diagnostic tools are getting better and more accurate every day, so even if you do have a recurrence, it will likely be caught early and be very treatable.

Joyce

crselby

terri805 said:

I am feeling somewhat nervous
I was feeling pretty confident about my treatment with the hopes of after rads I would be cancer free but after reading posts that in some cases cancer was found far away from the original siting when a mastectomy was done and pathology found more cancer in the breast removed. I thought that cancer would show up on mri's,mammo's, and ultra sound? So now I have to worry that more could be hiding in my breast somewhere that wasn't seen? Greatttt! I thought that if it wasn't seen then it wasn't there. I feel really stupid now for thinking after rads that I would be cancer free but maybe not. Hmmm... this burst my bubble.Just like when I was told that microcalcifications are not cancer 80 to 85% of the time. Well here I am in that 15 to 20 %. I guess I will just have to suck it up and not worry or dwell on the fact that there is a chance it could come back or that there was more than was seen.

I know what you mean about
I know what you mean about being in that 15% to 20%. I feel like I got burned with those odds so why couldn't it happen to me again, with recurrance odds.... But please remember that the reason you are undergoing radiation is to kill off any remaining bugger cells that might be hiding. Although DCIS isn't invasive, the down side to it is that the cells tend to follow along ducts and start new 'colonies', again, not invasive, but widespread in the ducts of the breast. Hence, the radiation. Even though we were caught in the small percentages of cancer statistics once, doesn't mean we always will. In fact, the odds are, it's our turn to fall in the larger percentage now, right? Hope you can stay positive, Terri.
~~Connie~~

susanleeann

Sharon_D said:

Hi Terri
Leading up to my surgery in July 2009, my dr really leaned toward a lumpectomy but my husband and I discussed it and we didn't want to risk the chance of it coming back, so I chose mastectomy. As it turned out, there were 3 cancer sights and it was in 1 lymph node, so I really had no choice, but I didn't want to risk it and I am glad I took the aggressive approach. I'm 62. If I was younger, it might make more of a difference to me, but I chose not to reconstruct.

By the way, my dr told me that 4% of his patients that had the condition I had, actually tested positive for cancer. I was in that lucky 4% also!

i figure it doesn't matter
i figure it doesn't matter how small the percentage is--if it happens to you it is a lot! the doc may say this or that side effect only happens in less that 3% of patients, if it happens to you, it does not matter any more.

GreeneyedGirl

crselby said:

I know what you mean about
I know what you mean about being in that 15% to 20%. I feel like I got burned with those odds so why couldn't it happen to me again, with recurrance odds.... But please remember that the reason you are undergoing radiation is to kill off any remaining bugger cells that might be hiding. Although DCIS isn't invasive, the down side to it is that the cells tend to follow along ducts and start new 'colonies', again, not invasive, but widespread in the ducts of the breast. Hence, the radiation. Even though we were caught in the small percentages of cancer statistics once, doesn't mean we always will. In fact, the odds are, it's our turn to fall in the larger percentage now, right? Hope you can stay positive, Terri.
~~Connie~~

No regrets~ really
At the time I was diagnosed, my surgeon recommended that we spare breast tissue with the lumpectomy. I was in such shock at the diagnosis, i had been a caregiver to my mother who had passed away 6 mo earlier to renal cell carcinoma. I was still grieving her death when I got my own news. I know, that I made the decisions I did at the time-based on the information i had, plus the input of my family. I trusted in those decisions at that time. I think it is natural to look back and say, I should have, why didn't I...but, I don't dwell or stay there very long. I had really large breasts before-and I am a bit on the petite side. I love my new smaller boobies. I can zip up my clothes now!
It is important to move forward, and lay hold of the journey I have been on, and just be thankful where I am now. Healed, restored and feeling whole.
Don't let fear rob you of peace of mind. Sorry if I posted anything that caused you any confusion~that was not my intention.
Melanie

terri805

GreeneyedGirl said:

No regrets~ really
At the time I was diagnosed, my surgeon recommended that we spare breast tissue with the lumpectomy. I was in such shock at the diagnosis, i had been a caregiver to my mother who had passed away 6 mo earlier to renal cell carcinoma. I was still grieving her death when I got my own news. I know, that I made the decisions I did at the time-based on the information i had, plus the input of my family. I trusted in those decisions at that time. I think it is natural to look back and say, I should have, why didn't I...but, I don't dwell or stay there very long. I had really large breasts before-and I am a bit on the petite side. I love my new smaller boobies. I can zip up my clothes now!
It is important to move forward, and lay hold of the journey I have been on, and just be thankful where I am now. Healed, restored and feeling whole.
Don't let fear rob you of peace of mind. Sorry if I posted anything that caused you any confusion~that was not my intention.
Melanie

Melanie
You did not post anything that confused me. I just go up and down with what if this and that and so on. I keep telling myself to just take one day at a time and not to spend my life worrying about things that might not even happen but sometimes I get myself all worked up worrying about stuff.I like your positive attitude can I borrow it? lol

terri805

jk1952 said:

Terri, I hope that my

Terri, I hope that my comments didn't scare you. Please remember that the chances of a healthy life post breast cancer treatment are much higher than the chances of a recurrence. And, diagnostic tools are getting better and more accurate every day, so even if you do have a recurrence, it will likely be caught early and be very treatable.

Joyce

Joyce
Your comments did not scare me anymore than I already am. I just try not to think about it or worry because it is not going to make it not happen and I don't want to spend my time worrying so when it pops into my mind I just try to block it because I don't want to think of a recurrence as a possibilty. Wow I think I am just rambling on. Sorry. I just want to believe that once I get through this treatment I will be done forever.

terri805

crselby said:

I know what you mean about
I know what you mean about being in that 15% to 20%. I feel like I got burned with those odds so why couldn't it happen to me again, with recurrance odds.... But please remember that the reason you are undergoing radiation is to kill off any remaining bugger cells that might be hiding. Although DCIS isn't invasive, the down side to it is that the cells tend to follow along ducts and start new 'colonies', again, not invasive, but widespread in the ducts of the breast. Hence, the radiation. Even though we were caught in the small percentages of cancer statistics once, doesn't mean we always will. In fact, the odds are, it's our turn to fall in the larger percentage now, right? Hope you can stay positive, Terri.
~~Connie~~

Thanks Connie
Thanks for your words of encouragement. I try to be positive for the sake of my family and of course myself to but I just go through worry periods.

jk1952

terri805 said:

Thanks Connie
Thanks for your words of encouragement. I try to be positive for the sake of my family and of course myself to but I just go through worry periods.

Terri, there will come a

Terri, there will come a time when you'll go hours, then day, without thinking about cancer. It will be wonderful to realize, hey, it didn't even cross my mind yesterday. Beleive me, there is a good life after the treatments. Look forward to the things that you want to do when these radiation treatments are done. We went on a two week sailing vacation a few weeks after I was done. It was a great way to rest up for the post-cancer life.

Joyce

jbug

Glad you posted your
Glad you posted your question...i've been reading what other sisters have posted. My dx in Nov 09 was IDC and DCIS, Stage 1 and i decided on lumpectomy/rads...made my decision based on research data on long term survival differences btw lumpectomy and mastectomy...as well as potential for recurrence for me was identified as 1-2%. So, looking at the glass half full...98-99% of NO recurrence.

Honestly, i felt fear and a bit of panic when i read posts of sisters w/recurrence, women that had lumpectomies and mastectomies. But there are also lots of women that have not had recurrence. Personally i'm happy w/my treatment decision and am trusting God in being completely healed now. I'm taking tamoxifen for long term prevention and will continue to have followups...I'm working hard to move forward and not live in fear of the future.

Good luck w/your decisions...God bless...
Julie

crselby

jbug said:

Glad you posted your
Glad you posted your question...i've been reading what other sisters have posted. My dx in Nov 09 was IDC and DCIS, Stage 1 and i decided on lumpectomy/rads...made my decision based on research data on long term survival differences btw lumpectomy and mastectomy...as well as potential for recurrence for me was identified as 1-2%. So, looking at the glass half full...98-99% of NO recurrence.

Honestly, i felt fear and a bit of panic when i read posts of sisters w/recurrence, women that had lumpectomies and mastectomies. But there are also lots of women that have not had recurrence. Personally i'm happy w/my treatment decision and am trusting God in being completely healed now. I'm taking tamoxifen for long term prevention and will continue to have followups...I'm working hard to move forward and not live in fear of the future.

Good luck w/your decisions...God bless...
Julie

those with no recurrance
I believe, ladies, that those sisters with no recurrances have moved on, do not read this board anymore, and we don't hear from them. I feel so bad for those women in the smaller percentage who end up with a recurrance. The larger group, those for whom no cancer reappears, is the group we don't hear from. Wouldn't it be wonderful if they could tell us their stories?!
~~Connie~~

Megan M

GreeneyedGirl said:

Hi Terri~
I was diagnosed in 06 with dcis, it was contained, a stage 0. I had a lumpectomy and 33 radiation treatments. I was told~ a 4% chance of re-occurrence. Well, someone falls into that 4%~ and it was me, 2 years later. So, I wound up having a mastectomy on my left breast~At the time of my initial diagnosis I based my decisions on the information at hand. There was/is no family history~ I cannot change the course of what occurred but, if I could have foreseen what was ahead~ perhaps my decision would have been different. But, we can't see what is ahead. I don't mean to confuse you. Just really think about your options. And if some option you think of is not offered to you~ASK if it can be. Be very active in your health care.
I hope my information has helped in some way.
Melanie

Having a lumpectomy with
Having a lumpectomy with rads has the same recurrence as having a mastectomy. I don't think that some women are told or informed that even with a mastectomy, they can never get all of the breast tissue. So, I think women get totally shocked when they get a recurrence after having a mastectomy. Also, rads kill any stray cells and some women with mastectomy's don't have rads. And, some have no choice.

Megan

parisny

crselby said:

4%, 14%, 8%?????
Hi Terri. I had a lumpectomy for DCIS in July 2009, had brachytherapy rads, and am on Tamoxifen. My radiation oncologist said the chance of recurrance, without Tamoxifen would be about 4%. Taking Tamoxifen would reduce that to 2%. Both he and I felt that the side effects of Tamoxifen weren't worth the 2% reduction, so at first I refused it. Then I did some online research and saw the oncologist again. He said the fact that my cancer was grade 3 pushed the chance of recurrance to 14%. Wow. Much higher. So Tamoxifen would reduce that to about 8%. Eight in 100 women would have a recurrance if they had all my factors. Hmm. I started taking the Tamoxifen. When I next talked to my radiation oncologist, he said, it's a good idea to go with what your feelings tell you to do. If you think the grade 3 is trouble, then take the Tamoxifen. Not very scientific, but my radiation oncologist is considered a god among rad oncs, so I'll continue with the Tamoxifen.

I'll be interested to hear from other women about this!
~~Connie~~

radiation oncologist
looking for a good radiation onc.
who is yours?