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Negative Nodes! Deciding whether or not to have mastectomy

bebe1976's picture
bebe1976
Posts: 60
Joined: Aug 2002

Dear friends,
I am happy to report that I got great news today. After having surgery which removed 16 lymph nodes from my left side, they were all found to be negative! I also have possitive progesterone and estrogen receptors which means I will be on Tamoxifen for the next 5 years. The Her-2 factor was weakly possitive, the tumor is diploid and the S-phase factor is borderline. Despite this encouraging news, I was told by one doctor that I should have a mastectomy because of the extension of the DCIS. My surgeon disagrees and has ordered a mammogram to see if there is any DCIS or invasive cancer remaining, although he doubts there is. If there is as much as a speck, I will definately have the third surgery, if not, the choice is up to me, any suggestions?
Hugs,
Jenn

isaiah4031
Posts: 243
Joined: Jun 2001

Hi Jenn,
I was in a similar situation. I had negative lymph nodes, and the choice between a lumpectomy and radiation, or a mastectomy and no radiation. The information I was given, and what I researched indicated that the survival rate was no different. I chose the former and have had no regrets. When they removed your tumor, I am assuming the margins were clear. I am also on Tamoxifen for 5 years. Recovery for a mastectomy is more extensive than a lumpectomy, but some ladies I have been in contact with opt for the mastectomy because they don't want to worry about a recurrance of cancer in the same breast. Also radiation can have certain side effects. I was blessed and did not have any unpleasant side effects from the radiation. Just a really tanned breast! I know that there are alot of things to consider, so I will pray for you that you will have all the info you need to make a wise decision. Whatever you choose will be right for you! Keep us posted.
Love, Jayne

shirlann
Posts: 235
Joined: Oct 2001

Hi, gal, Jayne gave you good advice. BUT, just so you know. Mastectomy does NOT insure no recurrence. In fact, Dr. Susan Love, in her Breast Book likes to have some tissue to work with in case of a recurrence, instead of having to hack around in the scar or the chest wall. So that should NOT be the reason for a mastectomy. You can most definitely get a recurrence. It is impossible to remove all the tissue. Hugs, Shirlann

bebe1976's picture
bebe1976
Posts: 60
Joined: Aug 2002

Hi Shirlann,
Just to clear up that I already had a partial mastectomy or quadrantectomy. They removed about 25% of my breast to be able to get rid of the cancer. Also, my margins were not clear, there was cancer 2mm within the margin. All this plus the fact that my Her2 is weakly possitive and my S-Phase is borderline is what make the decission that much more confusing. My choices are radiation and chemo with Adriamicyn and Taxol plus Tamoxifen and Herceptin, or mastectomy with the same course of chemo and systemic treatments. Any suggestions after having all the info?
Hugs,
Jenn

isaiah4031
Posts: 243
Joined: Jun 2001

Hi Shirlann,
Thanks for the clarification. I guess what I meant was that if that tissue was gone, it wouldn't be around to develop more cancer. I know that cancer can recur anywhere, but I guess I was rather confusing...nothing new for me! haha Anyway, thanks for making it clearer. That's why we are all such a good team..we help each other in so many ways! God bless you.
Love, Jayne :)

bebe1976's picture
bebe1976
Posts: 60
Joined: Aug 2002

Hi Jayne,
Just to clear up that I already had a partial mastectomy or quadrantectomy. They removed about 25% of my breast to be able to get rid of the cancer. Also, my margins were not clear, there was cancer 2mm within the margin. All this plus the fact that my Her2 is weakly possitive and my S-Phase is borderline is what make the decission that much more confusing. My choices are radiation and chemo with Adriamicyn and Taxol, or mastectomy with the same course of chemo. Any suggestions after having all the info?
Hugs,
Jenn

prayerangel
Posts: 150
Joined: Jul 2002

I could have had a lumpectomy. I had a mastectomy 2 years ago. No tamoxifen. Since they wanted to do a lumpectomy and couldn't assure me that I wouldn't have a disfigured 2nd breast I opted for the second mastectomy AND 2 reconstructions all at the same time. Been out of the hospital a week.

isaiah4031
Posts: 243
Joined: Jun 2001

Hi Jenn,
You have lots of information and that is a very good thing. I can only answer for myself, and I decided that I wanted to do everything I possibly could to get rid of as much cancer as I could. I opted for chemo in addition to the radiation and I am glad for that. I don't know how important body image is to you. I know that some people say that that doesn't matter if it's your life that's in question, but realistically, it is very important to some women. There is so much to consider. I applaud you getting as much info as you can. Talk to those closest to you and be real honest with yourself. I didn't chose the mastectomy because my cancer wasn't as extensive and the doctor gave me lots of info in making my decision. I know that if I felt that it was questionable, I wouldn't hesitate to have a mastectomy. I think we should fight breast cancer with all we can. (I'm also 47 and maybe body image would be more of a factor if I were younger...) Anyway, I feel like I'm not offering anything of value to you just my rambling thoughts, so just talk to those close to you, study your facts and whatever decision you make will be the best one for you. I did alot of praying and asked the Lord to guide me to the right decision. That's my prayer for you. Sorry for this lengthy note...Please keep us posted.
Love, Jayne

24242
Posts: 1417
Joined: Mar 2001

Hi Jenn,
I was just wondering your age since your profile isn't filled out couldn't tell from your web page. I think that would be the only thing mammography would not be useful for is if you are under the age of 50. Most often mammography useless for our tissue when younger, not a very good diagnostic tool in this case. And No this will not ensure that you won't get a reoccurance but will minimize the risk factors.
Be good to yourself,
Tara

bebe1976's picture
bebe1976
Posts: 60
Joined: Aug 2002

Hey Tara,
To answer your question, I'm only 25 years old, but the mammogram was useful in detecting my cancer since I had a grade III extensive DCIS with microcalcifications and necrosis which showed up. I guess that's what they'll be looking for now.
Love,
Jenn

prettywoman
Posts: 7
Joined: Aug 2002

Jenn,

Happy to hear that your news was good! (Sorry I don't have a suggestion to your question though!)

bebe1976's picture
bebe1976
Posts: 60
Joined: Aug 2002

Hi sweetie,
just to let you know that you should have gotten a message in this e-mail yesterday with all the answers to your questions and my phone number and other e-mail address just in case you need anything.
Hope to hear from you,
Jenn

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