DCIS with Positive Lymph nodes

[Ejr6358]

I was diagnosed with DCIS in April 06...followed by a lumpectomy not clean margins.  I was the sceduled for a bilateral mastectomy in July.  The cancer was positive for estrogen and progesterone.  

As they were wheeling me into surgery on July 6 06 I asked if they had checked my lymph nodes...the answer was no and with DCIS there was no need.  I voiced my concern and the doc said she may check them if she felt they looked funny.  When I came to from my double mastectomy they had found cancer in 1 of my lymph nodes they removed 8 and 4 looked suspicous.  I was mortified.   I went to the oncologist and the path report showed 14 cancer cells not dcis cells washing thru..in 1 node...they re-disected my breast tissue and still no evidence of invasive breast tissue.  Because the size of the cancer was .1 cm they do not feel I need chemotherapy.  It scares me that there were cancer cells in my lymph nodes and that does not happen with DCIS.  Should I feel comfortable with this treatment option?

[CCF-RN,MSN-JS]

Dear ejr6358, Ductal carcinoma in situ (DCIS) is a non-invasive cancer and would not have the ability to spread.  Having found cancer in the lymph nodes it is likely that there was a component of invasive cancer.  Decisions regarding adjuvant chemotherapy or hormonal therapy are based on several factors, including the status of the lymph nodes, the size of cancer and its appearance under the microscope as well as the presence or absence of hormone receptors for estrogen and/or progesterone.  A second opinion from an oncologist who can evaluate all of the results specific to your case, may help you in terms of comfort with the plan.

[boninclyde]

My case in much like yours. I will be having a masectomy on my right breast. Could you please tell me about the surgery? Starting with how they put you to sleep.  How long did the surgery take? How long did it take you to wake up? How long was your hospital stay? How are you now?  I was told they can only check my lymphs nodes just before surgery with dye or well this is to know which ones to take out to be tested for cancer, the sentinial nodes I believe. While they are doing the masectomy those nodes will be tested and results will be back in 25 minutes. Then he will know if he has to take out anymore.I'm sorry to pry but I am scared terribly to have this surgery. Though I know I must. Keep us posted. Prayers to you.

[Ejr6358]

I had my surgery July 6th. I opted for the double so I never have to worry about this again. I am 4 weeks out today.  I had reconstruction started so my surgery was 9 hours.  I had the muscles from my back used to replace the tissue.  The dye was inserted once I was put to sleep and the results were known during surgery. I had 8 nodes removed.  One was positive.  You are unaware of the time you are out.  It is hard for your relatives to wait but to you it will seem like 1 minute.  You will have drain tubes for a time after surgery.  Mine came out at 3  weeks. I feel pretty good now but still lack strenght in my upper body and overall energy level is low.  I wish I could take your fear because I have been there...and the fear and the waiting is much worse than the surgery.  I guess it was tough for me because I knew I had no options...it had to happen.  Hang in there....and if you would like to trade e-mail addresses we can talk that way....I am keeping a log of pics from the surgery....

When are you scheduled surgery?  Have you decided upon what type you are doing....not to pry but around what age are you...is that a consideration for reconstruction?

[boninclyde]

Not much time to talk. Love to talk more later. Today is my daughters 16th birthday. I am 41. With two other little girls. Yes will enchange e-mails. They say we are not allowed on here but. I will give it to you later. My surgery for a masectomy is August 25th starting @ 7:00am. Sorry I can't talk more now.

[teddy1]

hello , my name is teddy1 andi had a tram flap using my ;stomach. i had my surgery in 05 . one yr ago. i am ok. now. i would like to be in touch with u also . i can give u my email . let me know yours to.

[leah1234]

Hi,

  I am new to this site and have been diagnosed with breast cancer at age 40. I would love to share emails and chat back and forth with others who have gone through the same thing. I had a lumpuctomy and my lympth nodes tested. The first test they do they came back no cancer but then when I went to the doctor for check up he said the second test when they send them out showed cancer. I know have to have surgery again and have the lympth nodes out. Can I ask why you choose the mast instead of the lumpuctomy. I dont know alot about cancer and when I was given the option, I only went with the lumpuctomy because the doctor said he thought it was best for me at my age. I know alot of things I read on here said I should of had the mast. but I was so confused and scared that I did not really know which to do. again I would love to chat and exchange emails.

[boninclyde]

I chose the masectomy because I never want to go through this again. With reconstruction my breats will look the same sort of there will be no chance of reoccurance. I suffer from panic attacks and anxiety so this is really hard for me. I don't want to have to worry for the next five years about the cancer returning and then possibly being invasive. I also understand you have one chance at radiation and if cancer comes back in the same breast then I guess they would have to do chemo. I just don't want this. I want it gone. If I can get through this surgery I will opt for the salines as reconstruction because of the possible side effects of silicone. You really have to do your research here. Also if you read some of my other post there are other reason I do not want to do this again.

[boninclyde]

We/I posted our e-mail and they scolded me for it and removed it.

[Under Forty Pam]

I opted for the lumpectomy.  I was never told about the rule of you can only get radiation once.  Hmmm might have to check on that although it is a little late now.    I couldn't stomach the thought of all the reconstruction activities and surgery.  Too many photos and too many decisions for me.  I am 39 so I am right next to you in age and just slightly ahead of you in the process.

[libby28]

My daughter is scheduled for surgery on 9/20 for the very same surgery and Latissimus dorsi flap reconstruction as you have had.  She will email you through this site tonight and I know she will be asking the same questions as I am.  First of all, I think your comments and spirit are great.  When you returned home from the hospital, were you able to sleep in your bed or a recliner?  Several ladies have told us to use a recliner because it's difficult to get out of the bed.  How much assistance did you need, were you in lots of pain? What about all the drains? Is there a special diet to help build up strength??? Whatever info you have would be greatly appreciated.  Thank you and God Bless....

[cyn17]

My mother had the same surgery and I cared for her sfterward. She slept in her bed, but did need some assitance with getting up the first few days home. The hardest for her was lack of arm mobility. As for the drains, they need to be emptied, and I helped with that. I also helped her with unwrapping and wrapping her bandages for her first shower. She didn't want to be the first to look at her chest and asked me to, then I supported her when she looked. Your daughter is lucky to have you to support her!!

[libby28]

Thank you so much for your response.  It sounds like you were a tremendous help to your mom and I know how much she appreciated you.  I hope I will be as brave as you.  How long did it take her until she starting feeling better and did she have a lot of back pain? Did she have chemo after the surgery? Thanks again...

[cyn17]

In my mom's case, she didn't need the back muscle removed until 6 years after reconstruction. During her mastectomy, they placed a saline implant under her chest wall with a tube coming out on the side of the chest. Every two weeks they injected more saline into the implant, stretching the muscle wall until she was the size needed (B or C cup). Six years later the implant started protuding through the muscle wall and then they had to replace with back muscle. She seemed to tolerate that fine. Side note: I was AMAZED at how natural her breast looked after reconstruction was complete!!

My mom had chemo once a month for 6 months. It was very hard on her physically. She continued to work, though part time for the first year. Honestly, it took about 3 years to really be back to her old self...her hair was all grown back, weight was normal, energy was good.

[libby28]

Thanks again for your encouraging info.  I will let you know how my daughter's doing after the surgery on the 20th.  I'm so glad that your Mom is well and back to herself. You've helped us a lot... thanks and God Bless.

[cyn17]

I'll be thinking of you both and praying for the best possible outcome!!

[cyn17]

Libby - So tomorrow is the day. I will be thinking of you and your daughter. I hope all goes smoothly and that she has an easy recovery. Take care!