Newly diagnosed with DCIS Making decison for treatment
Thanks!
Debbie
Comments
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Mastectomy Experience
I just posted a second ago on my mastectomy experience. Look just under this post and I think you will find it. I had to have a mastectomy because I had two spots of invasive cancer in one small breast. I just couldn't handle getting clean margins on the two spots they originally did lumpectomies and I wasn't really keen on going through multiple operations with no idea of the outcomes either. Getting a mastectomy did mean that I skipped radiation. My friends that did have radiation said that it was no big deal but they did get tired the last week or two. I wonder if any other survivors that visit this board deal with MS too.
C. Abbott0 -
Decisions Decisions whew!cabbott said:Mastectomy Experience
I just posted a second ago on my mastectomy experience. Look just under this post and I think you will find it. I had to have a mastectomy because I had two spots of invasive cancer in one small breast. I just couldn't handle getting clean margins on the two spots they originally did lumpectomies and I wasn't really keen on going through multiple operations with no idea of the outcomes either. Getting a mastectomy did mean that I skipped radiation. My friends that did have radiation said that it was no big deal but they did get tired the last week or two. I wonder if any other survivors that visit this board deal with MS too.
C. Abbott
Debbie, I also had dcis- stage 0 and contained, went thru a lumpectomy with 6 wks of radiation. All to have it return 2 years to the month and have to have a mastectomy. Radiation made reconstruction challenging. Radiated tissue doesn't like to "budge" much. I went thru with a latissimus dorsi flap 6 mo after the mastectomy and it has been fabulous. So many questions and decisions, what do they say about hindsight being 20/20??? Sometimes I just have to make decisions based on information, personal lifestyle, input of family and friends.....and trust I am doing the best for me even if I have to go thru the valleys or wait for a season to see the results.
Hope you find some of our experiences helpful. This is a great place to seek input.
Melanie0 -
Hi Debbie, I was dx with
Hi Debbie, I was dx with invasive ductal in June 2007 and proceeded with a modified radical mastectomy. Fortunately, I didn't need to have radiation but went through 8 rounds of CAF because of vascular invasion. I had a tram flap reconstruction 4 months after I finished with chemo. Do you have to have XRT? You might not have to have it if you're opting for a mastectomy. See what your doctors say when you go in on Wednesday and let us know. Hugs, Lili0 -
Melanie,GreeneyedGirl said:Decisions Decisions whew!
Debbie, I also had dcis- stage 0 and contained, went thru a lumpectomy with 6 wks of radiation. All to have it return 2 years to the month and have to have a mastectomy. Radiation made reconstruction challenging. Radiated tissue doesn't like to "budge" much. I went thru with a latissimus dorsi flap 6 mo after the mastectomy and it has been fabulous. So many questions and decisions, what do they say about hindsight being 20/20??? Sometimes I just have to make decisions based on information, personal lifestyle, input of family and friends.....and trust I am doing the best for me even if I have to go thru the valleys or wait for a season to see the results.
Hope you find some of our experiences helpful. This is a great place to seek input.
Melanie
Thank you so much
Melanie,
Thank you so much for that information. I am leaning towards mastectomy. I just feel I have way too many year ahead of me to re-occur! I appreciate you input!! I really dont think I want to do the radiation!!! We shall see what they say on Wednesday should be a pretty interesting day! I will get to talk to the XRT oncologist who also has MS if you can believe that! also the breast and reconstructive surgeons! So I will let you know.
How was the recovery from the mastectomy? I think they will be able to reconstruct at the same time.
Also how was radiation? Were you fatigued? I work full time my husband travels and I have a 16 and 13 year old girls! I would have to travel to chapel hill every day which is about 1/2 hour from work.
Thanks again everyone seems so friendly!
Deb0 -
Yes if I do the lumpectomy Immontero38 said:Hi Debbie, I was dx with
Hi Debbie, I was dx with invasive ductal in June 2007 and proceeded with a modified radical mastectomy. Fortunately, I didn't need to have radiation but went through 8 rounds of CAF because of vascular invasion. I had a tram flap reconstruction 4 months after I finished with chemo. Do you have to have XRT? You might not have to have it if you're opting for a mastectomy. See what your doctors say when you go in on Wednesday and let us know. Hugs, Lili
Yes if I do the lumpectomy I will have to have 6 weeks of XRT. If I do the mastectomy then no XRT. A big part of my decision making!!! I will let you know how Wed. goes!
Deb0 -
Good Luckdlr102369 said:Yes if I do the lumpectomy I
Yes if I do the lumpectomy I will have to have 6 weeks of XRT. If I do the mastectomy then no XRT. A big part of my decision making!!! I will let you know how Wed. goes!
Deb
Whatever you decide..good luck. The decisions about what to do are very personal and there are so many choices. Your MS must make that even more difficult. You might need some backup driver for radiation. I am not at that stage yet, but a friend felt worse with the radiation than she did with chemo.
Let us know how it goes on Wdenesday.0 -
Just finished radiation ondlr102369 said:Melanie,
Thank you so much
Melanie,
Thank you so much for that information. I am leaning towards mastectomy. I just feel I have way too many year ahead of me to re-occur! I appreciate you input!! I really dont think I want to do the radiation!!! We shall see what they say on Wednesday should be a pretty interesting day! I will get to talk to the XRT oncologist who also has MS if you can believe that! also the breast and reconstructive surgeons! So I will let you know.
How was the recovery from the mastectomy? I think they will be able to reconstruct at the same time.
Also how was radiation? Were you fatigued? I work full time my husband travels and I have a 16 and 13 year old girls! I would have to travel to chapel hill every day which is about 1/2 hour from work.
Thanks again everyone seems so friendly!
Deb
Just finished radiation on Christmas Eve following 4 rounds of chemo and lumpectomy. I agree with the statement about needing radiation if you have a lumpectomy. Breast cancer surgeon said the end result for me would be about the same if I had a lumpectomy and radiation or mastectomy only. I opted for the breast conserving lumpectomy. There was fatigue with radiation plus the hassle of going for treatment Mon-Fri for five weeks. After week #4 I had some burns for which I'm still treating with ointment. Lots of choices and decisions to be made. Good luck!0 -
Hi Debdlr102369 said:Melanie,
Thank you so much
Melanie,
Thank you so much for that information. I am leaning towards mastectomy. I just feel I have way too many year ahead of me to re-occur! I appreciate you input!! I really dont think I want to do the radiation!!! We shall see what they say on Wednesday should be a pretty interesting day! I will get to talk to the XRT oncologist who also has MS if you can believe that! also the breast and reconstructive surgeons! So I will let you know.
How was the recovery from the mastectomy? I think they will be able to reconstruct at the same time.
Also how was radiation? Were you fatigued? I work full time my husband travels and I have a 16 and 13 year old girls! I would have to travel to chapel hill every day which is about 1/2 hour from work.
Thanks again everyone seems so friendly!
Deb
I had a lumpectomy
Hi Deb
I had a lumpectomy followed by chemo then rads. Reconstruction one year later. The radiation is very doable. I too had to travel 30 minutes to the center . I worked full time and made my appointments early then off to work. I was pretty tired by the end but I think it was everything not just the rads.
Just curious as to where chappell hill is. There is one not far from me.
Hugs
Jadie0 -
Why reconstruction afterJadie said:Hi Deb
I had a lumpectomy
Hi Deb
I had a lumpectomy followed by chemo then rads. Reconstruction one year later. The radiation is very doable. I too had to travel 30 minutes to the center . I worked full time and made my appointments early then off to work. I was pretty tired by the end but I think it was everything not just the rads.
Just curious as to where chappell hill is. There is one not far from me.
Hugs
Jadie
Why reconstruction after lumpectomy? Just curious.0 -
planningdlr102369 said:chapel Hill is in NC. It is
chapel Hill is in NC. It is at University of North Carolina, Chapel Hill.
thanks for the info! I appreciate all the input I can get!
Deb
I was also diagnosed DCIS and had a double mas due to so many abnormal reports in the other breast. Didn't think I would need any additional treatment but margins were such I needed radiation. 7 weeks of those daily treatments can take it's toll on you but I agree with Jadie, I think it was the entire ordeal mentally and physically not just because of the radiation. I was able to work full time. It takes longer to undress and dress for the treatment than the actualy treatment itself. I met some wonderful people in this part of the journey as well. The best thing about planning is knowing that the goal is the same; there are just many ways to get there.0 -
TReatment Decision
HI Debbie,
I had much distress with those two very same decisions and you may have well already decided by the time you see this. Just know as many other wise women have said, your decision is right for you which ever way you decide on the information provided at the time. I tried to focus on NOT making a decision out of fear. I listened to my doctors, asked a lot of questions, read, sought the boards and prayed. I ended up doing the lumpectomy followed by radiation. I just finished my last rad yesterday. I told the doctor I was amazed at what I originally feared turned out to be very doable, and minimal disruption. (schedules mostly). I had very little skin irritation and truthfully, as a mother of teens and part time preschool teachers aid, I couldn't tell you if the fatigue was anything out of the ordinarly of my normal life! Maybe a few days here and there. As you read these responses you see how different this desease and treatment can be for each individual. I just pray, whatever you decide, you are at peace. I know once I did that, everything really started flowing well. Will it come back? Who knows! I decided not to live in fear, but trust in the Lord with whatever He gives me. Good Luck in your decision and treatment! (I do have to take Tamoxifin for the next 5 years, not to happy about that, but hey, it's a small price to pay I guess.)
Take Care!
Phillis0 -
When I had my lumpectomy first time dr said that the margin was narrow, clear but narrow so he wanted to to go back and take more out. Also one node was involved and he took out more nodes. ( one more pos). After the second surgery I had a big difference in size also a huge dent. (first surgery was hardly noticable) I could have lived with it but I chose not to. So I had reconstruction on that breast and reduction on the other. Sometimes you have to do something just for yourself. After all that I had been through I felt that I deserved it. It certainlly made me feel better about myself. And insurance paid it all but $20 co-pay.Derbygirl said:Why reconstruction after
Why reconstruction after lumpectomy? Just curious.
Jadie0 -
Visit to UNC Multidisciplinary Clinicphillis313 said:TReatment Decision
HI Debbie,
I had much distress with those two very same decisions and you may have well already decided by the time you see this. Just know as many other wise women have said, your decision is right for you which ever way you decide on the information provided at the time. I tried to focus on NOT making a decision out of fear. I listened to my doctors, asked a lot of questions, read, sought the boards and prayed. I ended up doing the lumpectomy followed by radiation. I just finished my last rad yesterday. I told the doctor I was amazed at what I originally feared turned out to be very doable, and minimal disruption. (schedules mostly). I had very little skin irritation and truthfully, as a mother of teens and part time preschool teachers aid, I couldn't tell you if the fatigue was anything out of the ordinarly of my normal life! Maybe a few days here and there. As you read these responses you see how different this desease and treatment can be for each individual. I just pray, whatever you decide, you are at peace. I know once I did that, everything really started flowing well. Will it come back? Who knows! I decided not to live in fear, but trust in the Lord with whatever He gives me. Good Luck in your decision and treatment! (I do have to take Tamoxifin for the next 5 years, not to happy about that, but hey, it's a small price to pay I guess.)
Take Care!
Phillis
Well what a LONG day. We were at UNC from 9am to 5pm New Years Eve. They did more views via mamogram, and then US. They found another spot on my right breast that I will need to have biopsied on the 12th. Then they found a couple spots on my left breast. The surgeon was not to confident that he would be able to get all of the tumor on the left with clean margins. He said he could try and then if they didnt get it all they could always go back and do a mastectomy.
With the new area on the right breast we decided to go with a bilateral mastectomy with reconstruction. I dont have enough of my own tissue and since I am active with running and doing a triathlon which i would like to do again we opted for tissue expanders with implants.
I looked at some websites and pictures and phew even as a nurse it made me nervous. It is way more complex than I ever imagined!!!
But what a great experience to meet with the genetic counselor (because I am 39), the breast surgeon, the plastic surgeon and I have my own nurse and counselor. Amazing. Everyone was very nice. We were exhausted by the end of the day that is for sure!
I am sure there are other postings on the mastectomy experience so I will look there for some info and advice.
Hope you all have a fabulous New Year. I appreciate all of your kindness and encouragement!
Debbie0 -
Good for You...dlr102369 said:Visit to UNC Multidisciplinary Clinic
Well what a LONG day. We were at UNC from 9am to 5pm New Years Eve. They did more views via mamogram, and then US. They found another spot on my right breast that I will need to have biopsied on the 12th. Then they found a couple spots on my left breast. The surgeon was not to confident that he would be able to get all of the tumor on the left with clean margins. He said he could try and then if they didnt get it all they could always go back and do a mastectomy.
With the new area on the right breast we decided to go with a bilateral mastectomy with reconstruction. I dont have enough of my own tissue and since I am active with running and doing a triathlon which i would like to do again we opted for tissue expanders with implants.
I looked at some websites and pictures and phew even as a nurse it made me nervous. It is way more complex than I ever imagined!!!
But what a great experience to meet with the genetic counselor (because I am 39), the breast surgeon, the plastic surgeon and I have my own nurse and counselor. Amazing. Everyone was very nice. We were exhausted by the end of the day that is for sure!
I am sure there are other postings on the mastectomy experience so I will look there for some info and advice.
Hope you all have a fabulous New Year. I appreciate all of your kindness and encouragement!
Debbie
I applaud you for choosing to be treated in a University setting at a cancer center. I did, too, and I believe I had the best care possible. I was at Northwestern University's Lynn Sage Breast Center and the new Prentice Women's Hosptial in Chicago. In my opinion, they are the absolute best. I felt so protected and so well taken care of. I have a team of three doctors and three PA's. They tended to my emotional state of mind as well as my physcial health. I had a lumpectomy, chemo and radiation. I'm doing very well. It sounds like you will have the same positive experience with your medical care. Best of everything to you. You'll be in my thoughts and prayers. Hugs, Marilynn P.S. I traveled 85 miles one way each day in order to be treated at Northwestern, but it was well worth the travel.0 -
Mastectomy- Chemo- Radiation
My dr. was going to just do a lumpectomy. I decided I wanted a mastectomy, just to be sure!!!
It probably took around a month afterwards before I was feeling pretty much back to normal. Of course then I had to start chemo (8 rounds) and then my dr's still wanted me to have 6 weeks of radiation.
It's a decision you and your dr. will have to decide!!
Good luck!!!0 -
Sorry for the delay in responseHarper Valley said:Mastectomy- Chemo- Radiation
My dr. was going to just do a lumpectomy. I decided I wanted a mastectomy, just to be sure!!!
It probably took around a month afterwards before I was feeling pretty much back to normal. Of course then I had to start chemo (8 rounds) and then my dr's still wanted me to have 6 weeks of radiation.
It's a decision you and your dr. will have to decide!!
Good luck!!!
I have been down a computer and have to rely on going to my sons house. Radiation was not a problem for me. I had no burning or redness at all. I was a bit tired after several weeks, just due to driving back and forth, tho it wasn't far. I just rested everyday, and took care of myself. The mastectomy was uncomfortable for the first week, I wasn't in pain, but was uncomfortable. Pain meds help. I was emotional looking at my breast being gone, and gradually adjusted to the changes, and have huge support behind my recovery. By the end of the second week I had come miles in my ability to resume the smallest of tasks. Each day I could do something, maybe not as good as usual, but gradually got stronger and better. Physical therapy was vital to having full range of motion. Best advice is rest-if you try and do too much, it will take you longer to bounce back.
I will be in touch.
Melanie0 -
Melanie,GreeneyedGirl said:Sorry for the delay in response
I have been down a computer and have to rely on going to my sons house. Radiation was not a problem for me. I had no burning or redness at all. I was a bit tired after several weeks, just due to driving back and forth, tho it wasn't far. I just rested everyday, and took care of myself. The mastectomy was uncomfortable for the first week, I wasn't in pain, but was uncomfortable. Pain meds help. I was emotional looking at my breast being gone, and gradually adjusted to the changes, and have huge support behind my recovery. By the end of the second week I had come miles in my ability to resume the smallest of tasks. Each day I could do something, maybe not as good as usual, but gradually got stronger and better. Physical therapy was vital to having full range of motion. Best advice is rest-if you try and do too much, it will take you longer to bounce back.
I will be in touch.
Melanie
Thanks so much!
Melanie,
Thanks so much! Looks like I will be having a bilateral mastectomy on the 30th. I will not need radiation. They re- reviewed my path slides and saw questionable micro invasion. Not quite sure how that will change my treatment. I am most scared of the surgery! I have been fortunate even with multiple sclerosis I have only had to stay in the hospital for the birth of my girls. So we shall see. I was concerned about the radiation and my MS as I have some fatigue already with that I just thought the radiation would do me in. The surgeon didnt think he could get the tumor all out with clean margins so the decision was kind of made for me.
We shall see..... I am thinking about photo journaling this journey. I love photography and thought it might be nice for others that go through this as opposed to those awful pictures of the gals standing up against a white wall like they are getting arrested! The pictures really scared me a bit!
Well happy new year!
Deb0 -
Hang in theredlr102369 said:Melanie,
Thanks so much!
Melanie,
Thanks so much! Looks like I will be having a bilateral mastectomy on the 30th. I will not need radiation. They re- reviewed my path slides and saw questionable micro invasion. Not quite sure how that will change my treatment. I am most scared of the surgery! I have been fortunate even with multiple sclerosis I have only had to stay in the hospital for the birth of my girls. So we shall see. I was concerned about the radiation and my MS as I have some fatigue already with that I just thought the radiation would do me in. The surgeon didnt think he could get the tumor all out with clean margins so the decision was kind of made for me.
We shall see..... I am thinking about photo journaling this journey. I love photography and thought it might be nice for others that go through this as opposed to those awful pictures of the gals standing up against a white wall like they are getting arrested! The pictures really scared me a bit!
Well happy new year!
Deb
Surgery is always scarey, the unknown things about it. You just keep a good attitude and ask questions, let them know your fears. Honesty is good. You are human. I will be thinking of you as you prepare, and recouperate.
M0 -
Good luckGreeneyedGirl said:Hang in there
Surgery is always scarey, the unknown things about it. You just keep a good attitude and ask questions, let them know your fears. Honesty is good. You are human. I will be thinking of you as you prepare, and recouperate.
M
You will be OK. The good thing about surgery is that you're asleep for it. Before you know it, it will be over and you will be recovering. Keep posting here and the wonderful people on this site will help or just listen when you need it.
Mimi0
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