Worried Sick Part 2

[Ceesun]

Well friends, seems those calcifications showed DCIS confined to the ducts in 3 slides-the largest was .2 cm. If that was the largest how large could the others have been.?? My onc. is recommending a mastectomy now, yet I remain NED in the body. I am heartsick for sure. I don't think I can continue to have a home life, patient life, and work life, too. Something must go. Continue teaching??? I just don't know. how long is the recovery after mastectomy and ladies, do you recommend reconstruction at the time of surgery?? I cannot understand why the DCIS did not get taken care of by chemo....in short, HELP!! Ceesun aka Cathy

[Becky]

Dear Cathy

I too had DCIS in the opposite breast. It was biopsied at the same time as my lumpectomy 3 years ago. The biopsy was done on a "fluke". One of the surgeons I saw on an opinion said she thought it should be biopsied. I didn't say anything to the other 2 surgeons when I saw them - bringing my films of course. At the end of each of those meetings, I pointed out the area the first surgeon was concerned about and they both said "that is a benign condition". I went with the first surgeon. It was low grade DCIS (3mm) with a 2cm clean margin. My lumpectomy was also clean. Knowing what I know now, I would have removed both of my breasts. However, I have been assured by surgeons, medical oncologists and my radiation oncologist not to have my breasts removed. Besides being watched diligently, I have radically changed my lifestyle. However, I did not get radiation on the DCIS side due to 3 different teams opinions including the University of Pennsylvania and Fox Chase. No rads on that side is a real concern regardless of what the docs say as most literature says to radiate. I will say, if you have DCIS questions, I am going to a seminar tomorrow night titled "DCIS - is it really cancer?" Let me know if you have anything to ask. I'm going and it will be at 7pm and I should be home by 9pm (maybe 9:30p). I will check the board and my private message box if you want.

As far as your chemo, I don't believe chemo does much for DCIS - especially if it is low grade. Although I do believe that Tamoxifen or an AI (if hormone positive - mine was highly hormone positive - much unlike my right side invasive cancer) does help alot and my radiation oncologist also said that Herceptin is beneficial (although my DCIS was not Her2+). He said this particular DCIS probably would have given me no trouble whatsoever in my whole life. Nobody really knows why some DCIS turn into trouble.

If I hadn't had clean margins on both sides (and wasn't so highly encouraged by all the surgeons and doctors I saw to keep my breasts) I would have done differently. Now I am just wondering what to really do and if I do it to have everything in order to have immediate reconstruction. However, being NED now, I am in no rush.

Let me know if you have any questions you want me to ask.

My heart is with yours.

[Mary Jo]

Hi Cathy,

I cannot speak to the DCIS because I didn't have that in the other breast but I did have an area of calcifications, near the chest wall, that concerned my docs as this area of calcification changed since the mammo done 6 months prior. Thankfully after having it biopsied, it was benign HOWEVER this area being near the chest wall scared me and just the fact that the area had changed in the 6 months prompted me to act in favor of a prophylactic mastectomy. I had a right breast mastectomy 8 months prior due to the cancer in that breast. In all honestly, I wanted a bi-lateral mastectomy at that time but was encouraged to keep my left breast as I was told the odds of developing cancer in that breast were less than it recurring elsewhere. That might be true, but having any area of suspicion in the other breast was enough to convince me to follow through with what I wanted all along. My surgeon did not argue with me as she understood how strongly I felt about it AND her being a woman, I honestly felt she agreed with my decision.

Now to speak to your concerns about the surgery itself. I found both mastectomy's really easy surgery. I do handle most things quite well, I will admit, but my surgeon did tell me that most of her patients say that there really isn't much pain involved. I didn't even need to take any pain meds. The right breast cancer mastectomy I had 2 sentinal nodes removed so there was a bit more discomfort in the arm pit area but the prophylactic side I had no nodes removed just the simple mastecomy. I recovered very quickly. As a matter of fact I had my first mastectomy (the right breast for cancer) on a Tuesday and by that Friday I took a 2 mile walk with my hubby. I did not choose reconstruction after either of my mastectomy's and have no plans too. Just not something I cared to do because of the added surgery time etc. Just not me. I'm fine with it this way and feel very comfortable and womanly just the way I am.

So, I hope this helps some what. My heart and prayers are with you. God Bless.

Mary Jo

[Julie2]

Hi Kathy,

When I had the neoadjuvant Taxol before my mastectomy My lump in the breast (4cm) and lymphnodes were totally melted away but the DCIS under the lump was still there. The reason my onc gave for that is the chemo will take care of the fastly growing cells but it is not effective in clearing the DCIS. Hope this helps. For this reason I think Herceptin with chemo is a better choice.( I could not take Taxol with Herceptin )

Julie

[Sherryg683]

Listen to what your heart and body are telling you. If you feel you can't do it all, which none of us can, give up something. I would suggest the job if you can afford it. Life is too short to be working yourself to death. I totally enjoy having the time to smell the roses, as they say..sherryg

[Hopeful]

Cathy,

I am so sorry to hear of your news. Reading your post, coincidentally, I see on the breastcancer.org site that there is an "Ask the Expert" on-line conference tomorrow evening from 9:30 to 11:00 pm EST on the topic, "Working During Treatment." Here is the link: http://www.breastcancer.org/community/ask_expert/index.jsp#current Maybe you can ask a question or get some information that will help you with your decision.

Best of luck to you,

Hopeful

[MJo]

Can you take a sabbatical? Please take care of yourself and try to put yourself first. Nothing is forever, and if you take a sabbatical you can go back to teaching when things calm down. The country needs teachers. I know a university prof who had mastectomy and reconstruction (tram flap) during the summer and went back to teaching in the fall. She said if she had to do it over, she would have taken a sabbatical for fall semester to help her fully recover. She had more pain than anticipated. If you can, give yourself the luxury of a sabbatical.

[BonnieR]

I opted for a bilateral mastectomy although the second "suspicious" side proved not to be malignant. But I do not regret it. I feel the peace of mind was worth it, rather than watching that side for possible developments over the years. Waiting for the other shoe to drop, as it were. I did not do reconstruction. But then I am in my early 60s. I don't know how I would have felt if I were younger. I just know I wanted surgery over with and to get on with my life. I also had sentinal node dissection so there was minimal compromise to my arms, range of motion , etc... I have heard from a few people that reconstruction is not without problems and discomfort and recovery is prolonged.
Regarding the mastectomies, the biggest problem, looking back, was that I had a total of 4 drains that had to be dealt with. Drained and measured. My husband was a saint about that. There was some pain, of course, but I also recall that I was up and about and "overdoing" things early on. Because I felt pretty good. So I needed reminding to take it easy.

[harrie]

Cathie,
I have been through 2 lumpectomies from DCIS each time. This last occurrance was a slight invasion with the DCIS. Nov of 2006 I had a bilat mastectomy with reconstruction, DIEP flap. When I look back to those experiences, it was very manageable. Pain was not significant. Drainage tubes was a bit of a hassle, but not bad. I am glad I did the mastectomy and am very happy with my breasts. If you would like any more detailed information, please let me know.
Maryanne

[harrie]

Cathie,
I think you have several factors in your favor. First of all 0.2 cm of DCIS is very small and how good it is that it is DCIS and not invasion. Considering the excellent prognosis for DCIS, I would look at it as a blessing that such small DCIS was found and that type of diagnosis should even more so ensure that you will be able to maintain an excellent, healthy, active lifestyle for the rest of your life.
I do not mean to sound overly optomistic and I do not mean to not respect your concern. I am just giving my personal feelings from being on that side of the fence, more then once.
Take care.
Maryanne