I'm 56 years old and had cancer in the same breast in 1994. I do not know if it was Triple Negative as that was not determined at that time. It was Stage 1 and I had radiation and a lumpectomy. I was diagnosed 12 weeks ago with Stage 3 Triple Negative in the same breast.

Has anyone had a similar experience? I am unable to use radiation as a treatment since it is the same breast. I have undergone 4 sessions of Adriamycin and Cytoxan and just had an ultrasound which showed no significant change which was of course, very disappointing news.  I am scheduled for 4 treatments of Taxotere and then double mastectomy. I am now engaging in significant research and looking for second opinions to determine if this is the best course of action.

I would appreciate any recommendations or sharing of experiences you may have. I live in San Diego.

Thanks,

Vivian

Thanks for your response. I am sorry about your recurrences. What was the location of your 3rd recurrence since your breast had been removed? Has it matastisized elsewhere in your body?

I am going to UNC Chapel Hill NC this week to meet with the team of Drs. there. I will be happy to share what I learn.

Wishing you the best,

Vivian

Thanks so much for your response and I wish you well with your surgery. What is pCR? I'm sorry I don't recognize that terminology.

Best,

Vivian

pCR= (pathological Complete Response) = a complete disappearance of detectable cancer 

Another question for you or anyone who knows- is carboplatin available for Triple Negative cancer treatment outside of clinical trials? I was told it was not, but have read several times about women who had successful results using it in combination with Taxol or Taxotere- and is there a clear advantage of using either Taxol or Taxotere over the other?

Thanks so much for the responses.

Vivian

just spend 1/2 hour crafting an important (I think) email to you and it was bounced back (and lost) because your mailbox is full..

I am sending you an email.

love,

Steve

Just read the rest of your posts and I, too, welcome you to TNBC Foundation. I think you will find this site to be a good resource..

I think it is good that you are going to UNC...I assume (always dangerous to do) that you will see Dr. Lisa Carey who is an expert on TNBC and a lovely woman, as well. Please tell her that I say hello. I met her at San Antonio Breast Cancer Symposium last year after she made an excellent presentation on TNBC.

Some other resources you might consider-

Dr. Ana Maria Gonzalez-MD Anderson Cancer Center

http://faculty.mdanderson.org/Ana_Gonzalez-Angulo/Default.asp?SNID=1481996111 - http://faculty.mdanderson.org/Ana_Gonzalez-Angulo/Default.asp?SNID=1481996111

Dr. Hope Rugo-UCSF

http://www.ucsfhealth.org/adult/cgi-bin/prd.cgi?action=DISPLAYDOCTOR&doctorid=1085 - http://www.ucsfhealth.org/adult/cgi-bin/prd.cgi?action=DISPLAYDOCTOR&doctorid=1085

good luck to you!!!

all the best,

Steve

Thanks so much. This is very helpful. Are you familiar with a Dr. Hope Rugo at UCSF? She was recommended to me as one of the top specialists in TN on the West Coast. Would appreicate any input you might have.

Vivian

Thanks for your responses. I just posted a question about Dr. Rugo. I am indeed meeting with Dr. Carey, as I understand that she is one of the best for TN in the country. I feel like I'm getting a late start, as I was diagnosed in June and have spent the last 2+ months on A/C that doesn't appear to have worked for me, but perhaps it was helpful in insuring that any stray cancer cells that may be anywhere else in my body are destroyed. I neglected to mention in my first post that my tumor is 4cmX4.5cm and I am node postive in my opposite side axillary lymph nodes and that I'm stage 3.

Vivian

 

You will find that the information this site sends around to everyone is awesome!  There are many years of first hand knowledge available to us all, so use each one's experience and build a good plan for yourself with your physician......

 

If you post in Recurrences more will see your posts and therefore get more responses.....

(just a thought)

 

I am 16 months out of surgery and had cyclophosphamide and Taxotere x 4 and 32 radiations.  I am having a mammogram and ultrasound done on Sept 21st to check out a new lump in the same breast, so hoping it is scar tissue.  Taxanes are really potent with TN so for sure use them with something else. 

 

Steve knows just about every doc there is for TN so his suggestions are great!  Denise has been here and back and is a super source of chemo and remedies.  Each one has their specialties and bring so much to this table of TNBC... We have numerous new members and some that have been here since inception.  Everyone just has so much to offer. 

 

We do have a spiritual  forum as well where we can pray together, do readings, vent, etc.  Carol is our spiritual guide she posts daily readings, thoughts and prayer. One of our seasoned members began a forum for Jewish prayer also if you desire.

 

Vivian have you been tested for the BRCA 1 & 2?  I did not see your age now and at first diagnosis? 

 

To add your information that shows at the bottom of each post, go to Control Panel, click on signature and edit to enter information.  That way you don't have to type it in each time you post. 

 

Again, Welcome and I am so sorry you are dealing with this again, but know you are in the best of company.  Your sister on a new journey, Helen in NS

Thanks for the great advice. I tested negative for BRCA1&2. I was 40 at first diagnosis and am almost 57 now.

The responses I've gotten thus far are very helpful.

Best,

Vivian

 

Currently, I have been on a clinical trials since 2008. My mets are to the chestwall area and now the bones in the upper chest. Most doctors in the Houston area, and what I have research consider this type, Stage IV mets, inoperable and only use chemo. The chemo trial I am taking now is a chemo which has been approved for colon cancer; it is called Camptosar. SN38 is the active part of Camptosar, and EZN -2208 is an anticancer agent that is changed in the body to release SN38. My tumor markers were way down on my last doctor's visit, and I will have a CT Scan this Wednesday, Sept. 8th.

 

I am curious about the Duke University team though and wondering if anyone has heard of their treatments??

 

Mary in Pearland, TX.

Diagnosed 2003

Mets 2005

Thanks for sharing the information you mentioned.

sorry you had that experience with Dr. Rugo. Yes, I agree she is very busy.

My experience has been just the opposite...She has been compassionate, caring and really listened to our questions and answered them intelligently and gently. 

Also, one time we saw her she had just come off a plane from a conference in China and must have been jet lagged but graciously kept the appointment and the other coincidentally the other time she was going on vacation but again kept the appt. and I did not feel either time that she was rushing us.

One of the patients I mentioned above had gone to another major cancer center before seeing Dr. Rugo. She had prepared about five questions and handed them to the oncologist. He looked at his watch and said "I am busy..I have time to answer one question..pick one" The woman was so flustered that she couldn't speak and the doc than said "I guess this meeting is over." We had prepared about ten questions for Dr. Rugo and she answered every one of them completely and even explained some of her answers.

I like her, personally, and I think she is one of the most knowledgeable breast medical oncologists in the country. When faced with horribly difficult decisions I like the idea of getting input from a really smart oncologist and again, I have found her to impart that information in a thoughtful, compassionate way. Most importantly, I believe both women really liked her, as well..

love,

Steve

Please don't be hard on yourself. You have important, unwanted surgery coming up in ten days and I am certain you are on edge. Very, very understandably so. Plus you are probably trying to figure out what to wear when we have lunch on Wednesday.  You will be happy to know that I have decided on green chinos and a comfortable shirt and Ecco shoes which are not too good looking but help my ailing back.

The only thing that is clear in all of this is that you are a lovely woman and a tremendous asset to all of us in our TNBC Foundation family..you have a first-rate intellect and generously share your knowledge with us and a compassionate heart. You have helped so many, many here. I am honored to be your friend so please be kind and gentle to yourself. You are our wonderful, quirky Denise. We are very lucky that you are here and we shall be here for you, as well.

see you soon and looking forward to a hug..

love,

Steve

You never have to be sorry about anything here, but as our guru, Steve let's us know when we cross the line and hopefully don't get hurt in the cross fire!  We all have our thoughts and feelings on how others treat us and freedom of speech sometimes is good but we need to be aware that it could come back to bite us.....Hugs, h.

 

I would like to suggewt that you contact the Bio Medical Center in Tijuana Mexico for alternative therapy consideration.  Also, go vegan and increase exercise program.  I was told that cancer is not a "system disease", but a blood disease, therefore, it is very helpful to begin by changing the blood chemistry and cleansing the blood as well.  I am a triple neg, since June 2009, with lumpectomy at Swedish in Seattle.    Doing okay now, it is never cured...  just controlled.  All the very best of success to you!

I was dx @ 47 1/09 TN in right breast had lumpectomy followed by 16 rounds of A/C + Avastin, followed by Taxol X12 weekly, then 35 radiation treatments.   Finished chemo 8/6/09, then finished radiation 10/27/09.  I found another lump in the armpit of the same breast last July.  Had biopsy to confirm same TN cancer.  Had bi lat mastectomy 8/19/10 w/expanders.  I see my onc tomorrow to see what, if any treatment I will need.   The Taxol left me with nerve damage to my hands and feet... since the recurrence happened so fast it is considered treatment failure....I feel like I dont have alot of choices.  As much as I dont want to do chemo again....I still feel it has some insurances...I DON'T want to do nothing and just wait and see where it pops up again ????   What is the Carbolain ???

Thanks, Renee

 

Hey, we are all adults on this board and I certainly know only too well that one man's sugar is another man's vinegar. 

 

Don't apologize.  I think with the situations we are all in, that it's more than fair game to give one's opinion of a situation they found themselves in, or what their particular reaction to any doctor might have been - and that it can prove timesaving and exceptionally important to someone.  If I didn't have a good outcome or a "warm-fuzzy" feeling with someone I was entrusting my life with, especially someone reknowned, I would speak my feelings as well, knowing full well that for someone else, she/he may be wonderful.  We all make our own choices as we well should.

 

No need to censor yourself - ever.

 

Linda

just my two cents (probably worth a lot less)....I think it is important that if someone has something that is negative to say about a physician, by name, it is better to invite folks to send you a PM and then tell them whatever you want privately. This is primarily for the protection of the website because a doc who has been criticized may decide to sue the site.  I have no official connection with TNBC Foundation and no one has asked me to post the above. Again, this is just my opinion.

I had lunch with Denise yesterday and it was wonderful to see her. She seems at piece with her decision to have surgery next week and she looks wonderful and is very happy at her new job. 

I told her that she has been, is and will be in my prayers as I am sure is the case with everyone here. Denise, we all wish you the best, I am sure..

love,

Steve