Cancer Survivors Network

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

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!

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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.

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.

Jadie

I just wanted to say hello, and I'm also an RN with a 2 week diagnosis of breast ca. And yes it is way different being on the other side of the needle. I wish you all the best,your fellow nurse friend Kathy

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.

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.

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.

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

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.
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.

Mimi

I am going for pre op on Wednesday. I am starting to get nervous! I have surgery on the 30th. Now that the DCIS is invasive they will biopsy the sentinel node. If this is positive then the will do a axillary node disection. If positive then chemo, I think. I just hate the unknown. Wonder how the expanders will be? How long they will be in and inflated? We shall see! How long were you all out of work during surgery? My friends at work are having a get together after work on Friday, a farewell to the ta ta's I thought that was cute!

Hope you are all doing well!

Debbie

The 30th is approaching and I am thinking of you. I currently have a tissue expander in place. For reconstruction I had a latissimus flap procedure, and the expander was inflated over a 2 month period. I never felt any pain or discomfort being filled, but have vicodin just incase. It feels a little tight right after an expansion. Sometimes it is uncomfortable to find a good position to sleep at night, kinda limited to your back or opposite side. As you reach your full expander size the breast feels hard. Dressing is sometimes challenging-stuffing your bra till your size is matched. 6 months after my initial surgery is the time to put the actual implant in, giving you ample time to heal in between. I don't work at this time, but felt great by 6 weeks out. Every one heals differently so give yourself time. I asked my doctor for some ativan to help with the anxiety of awaiting surgery. It is wonderful, and very relaxing.
Best to you- keep us posted as you can in the coming weeks of healing.
Melanie

Debbie, I will be praying that your news is good tomorrow. I agree with everyone--the surgery itself was not bad. The pain meds worked, and anti-nausea meds quickly stopped the post-anesthesis nausea. I went home the next day after my mastectomy. I was not really tired, either.

All the best tomorrow, and keep us posted.

Wanted to welcome you. You have gotten alot of good advice and support on this thread. I am 36, mother of three. I was diagnosed with bc in April. I had a double mastectomy with tissue expanders placed in at same time in june. With my expanders, they fill them every two weeks with saline to allow my tissue to expand and until im comfortable with the size they are. And yes, i am taking this opportunity to go a little bigger than i was before which was hardly nothing. I am currently doing chemo and have two more to go. I am glad that i went with the double mastectomy because the diagnosis was in the left breast but the right had fibrocysic disease and the tissue had started changing and forming into cancer. I didnt know about the right before surgery, i just wanted to take them both to give me some peace. I had alot of pain after. some dont. The filling of the expanders is not painful. When that process is done, they remove the expanders and replace with implants. Im excited about that part. I dont know what it is like to have MS on top of bc. I do however have a couple of other health issues i deal with on a daily basis and i just deal with it because i know i have to and i know i will beat the bc. Oh, you will also be sent home with drains attached to you. I had a home nurse who came every day to check on me and check the site and make sure it was draining properly. It was easy taking care of the drains myself though. I hope things go well for you. Try to stay calm and know it will soon be behind you. You are in my thoughts and prayers.

laura

But I am a nurse, had DCIS, lumpectomy and 33 rad treatments. I am older, 56. I have a scar at the aureole from the surgery, and a tanned breast with some interesting skin changes from the radiation burn I had. I had a pretty good lump after the surgery but that has softened a whole lot in the last 10 months.

Maureen

Dear ally77,

Not sure the original poster will answer you because the original post was almost a year ago. Haven't seen that name on the boards recently ... but maybe they will! Just wanted to let you know. You might want to see a private message to the original poster?

Take care!
dh