Received DCIS Diagnosis - IT JUST GOT WORSE - Comments Invited

The women on my other threads have advised me to continue to post here.  So I plan to.  So please expect ongoing updates about my wife and maybe more questions.  BlairK

My wife and I met with the medical oncologist today.  The recommendation is Taxotere plus Cytoxan plus Herceptin once every 3 weeks for 4 treatments followed by Herceptin alone every three weeks for a year in total (counting from the beginning of treatment).  Also will be Arimidex after the TC is finished one pill a day for 5 years.  The treatments will start on November 30th.  The consensus is that radiation will not be necessary so we will focus on the chemo and related treatments.

Dear beacon800 - Greetings from China.  I am here on a business trip for two plus weeks.  Then I go home to take my wife and kids on a vacation before she starts treatments.  The medical oncologist mentioned joint pains from Arimidex.  Will keep everybody posted after my wife starts chemo.  I also started several other threads.

I received two very strongly worded private message rebukes from mycinnamon for my post back to DebiMetz so I am sorry for that although I can't respond back because mycinnamon does not accept private messages.  Everyone is welcome to post anywhere including here so again I apologize.  I was trying to suggest that if someone wants to reach a specific person, the private message facility may be more efficient but it came out the wrong way.  I would like to try and help DebiMetz belatedly.  My wife was in the same situation prior to her double mastectomy.  After DCIS was discovered in the second breast, there was no doubt that a BMX was the way to go.  My wife had an immediate reconstruction with gummy implants.  Gummy implants are used a lot in Canada and Europe but are not yet officially FDA approved in the US.  It is difficult to find a reconstruction surgeon who is trained to do the gummy implant.  The reasons my wife chose the gummy implant are that (1) our internist's wife had breast cancer, chose the gummy implant: (2) there is a reconstruction surgeon in our area who has performed over 1000 breat reconstructions with the gummy implant and has 25 years of experience; and (3) my wife did not like any of the flap options at all and felt the gummy implant option was superior to a silicon or saline implant option.  My wife also liked and felt very comfortable with the reconstruction surgeon.  The BMX and reconstruction for my wife on October 14th have gone well.  My wife got back quickly to her normal routine and has even started driving a car again.  The surgical drains came out in 10 days.  Her pain has faded away to being minimal although she has pain with certain arm movements.  For example she tried to close the trunk of our car and she had pain and could not do it so she asked me to close the trunk of the car.  I shook her hand in the care and she had some pain.  Overall she is back to normal from the point of view of recovering from the BMX and surgery.  She still can't lift anything for 6 weeks.  She has some unsightly holes in her back from the drains which will heal up soon.  I have not seen my wife's chest yet as she prefers for me to wait until she is all healed up.  She was told that her reconstructed breast size is slightly bigger than the original.  She will need additional work to restore her nipples and aerolas which were removed during the BMX and which turned out to have DCIS in them per the final pathology report.  Unfortunately the pathology report for my wife had some unpleasant surprises - IDC and HER2 positive.  So now my wife is facing chemotherapy (Taxotere and Cytoxan) and Herceptin.  Also arimidex.  I guess my biggest piece of advice to you is to be prepared that a BMX may not be enough although I certainly hope for your sake that it will be.  I wish you a successful BMX surgery and a full and complete recovery (and I also hope for your sake that the BMX will enough) and sorry for the way I worded my post and I hope you will be successful in finding and communicating with Wahine.  Again I am eternally grateful for this bulletin board, thank everybody for their help and support, and wish everybody a full and complete recovery.  I am actively posting now in the IDC, HER2 positive, chemotherapy boards but still wanted to keep any here up to date on my wife's situation.  My biggest question that I am searching for on the other boards is the difference between Taxotere + Cytoxan + Herceptin and Taxotere + Carboplatin + Herceptin and finding out about all the side effects and experiences from other posts.

My wife just met with the second oncologist and I just spoke to her on my cellphone.  Phone calls from Hong Kong and China on my cellphone are expensive so we are going to talk via Skype in an hour in more detail.  The second oncologist thinks my wife should hold off on chemotherapy and just do hormone therapy.  Again, my wife had three foci of HER2 positive invasive ductal carcinoma - 3.5 mm, 1.0 mm and less than 1.0 mm.  The second oncologist says anything under 5 mm (0.5 cm) should be monitored and treated with Tamoxifen or Arimidex.  The second oncologist believes that my wife should be "monitored" - how I am not sure until we speak via Skype.  The second oncologist said it is the size of the biggest tumor that counts.  She would treat with Herceptin if over 0.5 cm (5 mm).  The first oncologist added up all three foci to make his recommendation.  The second oncologist was trained at Dana Farber Cancer Institute at Harvard.  The second oncologists thinking does not make me hundred percent comfortable.  HER2 positive and all the articles about how aggressive it is are scary.  However, this still is within NCCN guidelines if the key is to go by the biggest tumor 3.5 mm and not to add all three tumors together.  I would be interested in all of your opinions as quickly as possible.  I think everyone on my thread has a tumor at least 0.5 cm in size or more.

My wife and I are going to go for a third opinion at a major hospital in either New York (likely Sloan Kettering) or Philadelphia (University of Pennsylvania).  I will post whenever this happens.  Also, the second oncologist is going to present my wife's case to a tumor board.  We both feel that a one month wait in December will not make a critical difference as we continue to search for the right path to take.

I have been corresponding with the second oncologist who is very very helpful.  Her hospital's pathology department has also reviewed the slides from my wife's removed breast.  They refer to the 3.5 mm foci as "isolated nests of cells" as opposed to "a solid sheet of cells".  They are not sure that they agree with the characterization of the 3.5 mm area as "full invasive ductal carcinoma" and I have asked them if since these are isolated nests of cells whether it is better to characterize this as "microinvasion".  If it is microinvasion then that points even more away from Herceptin and chemo.  We are going to get the third opinion doctor's hospital (U. Penn or Sloan Kettering) pathology department to review the slides and give an opinion the pathology as well.