Experience with 2nd cancer in same breast? |
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vivianhardage 
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Joined: Sep 05 2010 Location: San Diego Status: Offline Points: 9 |
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 Topic: Experience with 2nd cancer in same breast?Posted: Sep 05 2010 at 1:04pm |
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Hi,
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
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Sep 05 2010 at 1:51pm |
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Hi, Vivian. Welcome to TNBCF. There are several women on here who've had a second primary breast cancer, either in the same breast as their first or in the contralateral breast. So sorry you have to deal with cancer again. You treatment, neoadjuvant dose dense AC followed by T is pretty much standard of care. I'm sorry to hear your tumor didn't respond to the AC part of the chemo. I had the same experience, and switched course to carboplatin and taxotere after no obvious response to two ACs. Though I didn't have a pCR, my tumor was well on its way in that direction due to its response to the carbo-taxane combination. Had I not added the carboplatin to my regimen, I doubt I would have seen that much shrinkage. You might consider adding another drug to the taxane part of the regimen, as with TN it is very important that we find chemo that works. As for the surgery, since you had two primaries, I'd say that's a pretty good sign that you should get rid of them. Clearly you are prone to breast cancers, and won't be wanting a third visitation. (I'm getting rid of mine in a little under two weeks to avoid exactly this situation).
Good luck deciding, love, Denise |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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123Donna
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Posted: Sep 05 2010 at 1:55pm |
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Vivian,
Welcome! There are several women on this forum that have had a 2nd bc in the same breast. Hopefully they'll see your post and tell you their story. I had a bilateral mastectomy and the path report showed precancerous areas in both breasts. I believe if I didn't have the bi mx I would eventually had a 2nd bc. Just wanted to share my story. I know were all different. Sorry the AC didn't work. Now they know it they can try other chemo to see how your tumor responds. That's one of the advantages of chemo prior to surgery. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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6sisters
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Posted: Sep 05 2010 at 2:08pm |
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Hi Vivian,
I'd be very interested in any new ideas you might be able to come across. I was originally diagnosed in 2005 with TNBC Stage II in my left breast - I had a lumpectomy, radiation, chemo -- then in 2007 I had a recurrence in the exact same spot-- had a double mastectomy and another full round of chemo. Then in 2009 after having had the mastectomy I had yet another recurrence -- now I'm Stage IV --all of this occurring on the left side. The tumor that was detected in 2009 was surgically removed -- no radiation, of course, but I've been on chemo ever since. When they did the double mastectomy they removed as much of the radiated skin as possible in the event I would need radiation again -- since then that hasn't been an issue. So this is actually three cancers in the same breast and one after the breast was gone. I've been on Avastin for maintenance. It would be great if we can turn up some new research ideas. Lucy |
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vivianhardage
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Posted: Sep 05 2010 at 4:04pm |
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Hi Lucy,
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
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vivianhardage
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Posted: Sep 05 2010 at 4:25pm |
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Hi Denise,
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
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SagePatientAdvocates
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Posted: Sep 05 2010 at 5:05pm |
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Hi Vivian,
pCR= (pathological Complete Response) = a complete disappearance of detectable cancer good luck to you, Steve
Edited by steve - Sep 05 2010 at 5:06pm |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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vivianhardage
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Posted: Sep 05 2010 at 5:16pm |
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Denise,
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
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dmwolf
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Posted: Sep 05 2010 at 5:42pm |
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Vivian, it most certainly is available outside clinical trials. The drug that is not available outside clinical trials is PARP inhibitors. Carboplatin anyone can have, at any cancer center, and it will be covered by nearly any insurance. Carbo&taxane is what they give women with ovarian cancer, and many centers give it to women with breast cancer as well, especially triple negatives. Dennis Slamon at UCLA for example is in this camp, and many doctors in community hospitals go this route. Having AC followed by CArbo-taxane is what I've seen given to women with aggressive inflammatory cancers in my area, to very good effect. I've seen huge cancers melt away to nothing. As for Taxanes, the best is probably weekly taxol for 12 weeks, though taxol and taxotere might be equivalent. Since TN cancers tend to be high grade, more often (metronomic) is better. If you can, you might try weekly taxol combined with carboplatin either every three weeks (higher dose) or also weekly. I don't know how to think about weekly carbo vs every three weeks, so I don't have an opinion on that.
Good luck and keep us posted. Talk to your onc about adding carbo (or some other drug) to the mix as you start the taxane and if s/he won't do it, you might consider finding another doctor. This is your window of opportunity for cure, so you don't want a weak doc unwilling to move a little outside the most standard protocol to F it up. d WARNING: I am not an MD (though I'd like to play one on TV if I were to become an actor). Any opinions I express are my own and to be taken with a grain of salt. Then again, everything in oncology is to be taken with a grain of salt, as this science is hardly a science. Future generations will look back on our 'treatments' and shudder. Edited by dmwolf - Sep 06 2010 at 7:53pm |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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SagePatientAdvocates
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Posted: Sep 05 2010 at 6:14pm |
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Dear Denise,
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
Edited by steve - Sep 05 2010 at 6:37pm |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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SagePatientAdvocates
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Posted: Sep 05 2010 at 7:02pm |
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Dear Vivian,
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 Dr. Hope Rugo-UCSF good luck to you!!! all the best, Steve |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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vivianhardage
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Posted: Sep 05 2010 at 7:14pm |
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Denise,
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
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vivianhardage
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Posted: Sep 05 2010 at 7:20pm |
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Steve,
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
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TNBC_in_NS
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Posted: Sep 05 2010 at 11:54pm |
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Welcome Vivian! Although I am sorry you have to be here..
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
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Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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vivianhardage
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Posted: Sep 06 2010 at 1:24am |
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Helen,
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
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mwall47
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Posted: Sep 06 2010 at 8:12am |
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A friend of mine sent me an article about a woman with Triple Negative who met with doctors at Duke University in NC, and she had amazing results. The team uses complimentary therapy with the standard treatments. The woman in the article had the BRAC I mutation, and I don't.
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
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SagePatientAdvocates
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Posted: Sep 06 2010 at 9:42am |
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Dear Mary,
Thanks for sharing the information you mentioned.
good luck with your scan.. can you post the main details of the Duke article? name of paper or journal, date, author so that we can try to find it and read it. I am not quite sure what "complimentary therapy" the Duke physicians/researchers used. Do you have the name of the study you are on? I went to clinical trials.gov and found is this it? if you are comfortable telling us where are you getting your chemotherapy and who are your physicians? good luck with your therapy.. all the best, Steve |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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6sisters
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Posted: Sep 06 2010 at 11:34am |
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Dear Vivian, The third recurrence showed on a PT Scan in an area under my left shoulder, deep in the armpit area. It was biopsied and surgically removed and I've been on chemo ever since--Taxol and Avastin for 12 rounds and Avastin every other week since then. So far, NED. I also have a spot on the inner lining of my left lung -- inoperable. I never realized there was so much to cancer and all the different places it could land until this experience I've been going through. I'm quite a bit older than you -- 68 years. Scarey journey, but I love this site for us. Hugs, Lucy
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dmwolf
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Posted: Sep 06 2010 at 6:37pm |
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CENSORED by me after a reminder from the clear-headed Steve that I need to watch it. Thanks Steve.
The jist of what I had to say is that everyone at UCSF is really good, and they work together as a team to make treatment recommendations. If you can't get in to see Hope Rugo, you might want to try Michele Melisko. She is very compassionate. d Edited by dmwolf - Sep 06 2010 at 7:58pm |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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SagePatientAdvocates
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Posted: Sep 06 2010 at 7:30pm |
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Dear Denise,
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
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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