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Residual disease following neoadjuvant chemo

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christina1961 View Drop Down
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    Posted: Jul 21 2011 at 7:40pm
Hi, I recently completed 6 cycles of TAC followed by a uni MX and ALND.  The pathology report showed that my original 2.5 x 2.3 x 1.3 tumor was reduced to 2 x 1.7 x 1.3 with IDC and DCIS remaining in the tumor (still do not know percentage of each.)  I also had two positive nodes, the largest was 9 mm with no extracapsular extension; 16 nodes removed.  I had NO vascular invasion, basal subtype and am BRACA neg.  I had extremely clean margins - the closest was 2.5 cm, no skin involvement. I am 50.  I am having radiation within the next few weeks.  The oncologist does not want to do more chemo.  I already have some neuropathy in my left hand with numb index finger. There is a clinical trial in NC that would require traveling 7 hrs round trip once a week that involves cisplatin and parp inhibitors that I am considering.  I am supposed to receive info through the mail on the trial shortly. 
 
Can anyone else please provide their experiences with neoadjuvant chemo and residual disease.  I am staged 2a.  I know some others who have been given more chemo following less than a complete response however they are Stage 3 b or higher.  I also am frustrated because I do not know how much DCIS was left and how much the chemo reduced the cellularity of the mass.  The mass became much softer and smoother during chemo and felt much smaller - the onc thought it was only 5 mm.  Thanks so much.
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2011 at 8:29pm
Christina,

If I were you, I'd get a second opinion about more chemo.  There was still residual cancer after 6 treatments.  Wishing you the best.

Donna
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2011 at 9:51pm
Have you had radiation? In this business we are in of fighting TN, the better informed & the more aggressive the better. It's my understanding from reading here that the PARP trials have not produced what we had hoped for in results. There are other trials out there. In this instance, it might be a good idea to go for a 2nd opinion with a doctor that specializes in TN and can give you some insight on the viability of the different trials out there to get you the best match if that is how you decide to proceed.
 
Where are you may I ask? I was in a similar position of having to drive long distances to get treatment and with that kind of commitment it's worthwhile taking the time to thoroughly understand your options. From the way you frame your situation and question it's pretty obvious how thorough a person you are so I'm thinking that the more information you can pull together the better you'll feel about how to proceed.
 
Please keep in touch
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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christina1961 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote christina1961 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2011 at 10:31pm

Thank you both so much for your responses.  I have not had radiation yet, but am scheduled to begin shortly and am going to request (if not offered) axillary as well as the standard.  The oncologist I use is part of a group that is frequently involved frequently with clinical trials for TNBC.   I am looking forward to my appointment with the oncologist to discuss the path results.  The original pathologist (core needle biopsy) had recommended retesting the tumor bed for estrogen positivity so that is one thing I want to request along with an analysis of how much IDC vs DCIS was left, and the cellularity of the tumor bed.

I am in SE TN.
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2011 at 10:37pm
Christina,

I'm not sure where you're getting treated, but there is an NCCN facility in Tennessee:

Vanderbilt-Ingram Cancer Center.  If you are not currently going there, this would be an excellent choice for a second opinion.  We have a couple of members on this forum being treated there and maybe they'll comment.

The following is a link to the NCCN Guidelines.  Page 106 lists the member institutions.

http://www.nccn.com/images/patient-guidelines/pdf/breast.pdf


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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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2011 at 11:27pm
Hi, Christina.   Were the lymph nodes positive after the chemo, or did you have positive ones before chemo but none after chemo?   For me, this would probably be the deciding factor.  With negative nodes after chemo, I would probably forgo more chemotherapy.  With positive nodes after chemo, I would consider doing more chemo.  Though the travel would put me off as well.  I might try to find a way to be treated locally, say with a platinum drug like carboplatin plus something else (not sure what...maybe a PARPi if I could get it, maybe something else).  When you do the radiation, be sure they capture the axilla area and chest wall.   There's a survival advantage to irradiating both areas if nodes were ever positive.

I'm sorry you are dealing with residual disease and the decisions that come with it.  It sucks - I bet you're scared, as I was when I didn't have a pCR.  I too had significant residual disease after neoadjuvant chemo, and didn't do follow-up chemo aside from participating in a bisphosphonate clinical trial.    As far as I can tell, I seem to be in decent health 3+ years out, so try not to despair.  Not having a pCR definitely increases our odds of recurrence, but things can still turn out well, even without additional chemo.  Though from what I've seen, if your nodes are positive after chemo, this does additionally raise recurrence risk even beyond just having tumor left in the breast, so I'd be serious about getting additional opinions and exploring doing more chemo.  A platinum drug is the most likely to help, as many women who have cancers that are not sensitive to adramycin or taxane are sensitive to platinums.   When I switched from AC to Carbo-Taxotere after the AC did NOTHING to my tumor except maybe feed it, I found that the carbo worked much better.   The 6 rounds of Carbo-T I did after failed AC might be why I am still NED (as far as I know...it could be lurking quietly), though maybe I had one of those cancers that are neither responsive to many drugs nor dangerous.  It's impossible to know what camp we each fall in.

Anyways, as someone who faced residual disease after neo-chemo, I thought I'd pipe in with my sympathies.   We are here for you.

Love,
Denise


Edited by dmwolf - Jul 21 2011 at 11:28pm
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 12:16am
Denise,

So good to see you back!  We missed you and your brilliant mind.   Have you recovered from your adventurous vacation?


Christina,

Here's the link Denise was referring to:

http://forum.tnbcfoundation.org/radiation-rni_topic8602.html

I just completed wbi (whole breast irradiation) and rni (regional node irradiation). 

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 5:14am
Christina,

You've received some excellent advice here. I, too, had residual disease after neoadjuvant TC but with clean margins and no lymph node involvement. According to NCCN Guidelines, I did not need radiation. I was given a choice to have more chemo but the opinions of several oncologists were divided as to whether or not I should have it. Because I was Stage I with no positive lymph nodes, I chose not to have additional chemo. I don't know if it would have made a difference, but within 10 months of my surgery, I had lung mets show up on a CT scan. Everyone is different and everyone's cancer responds differently, so it's hard to make real comparisons. But I would encourage you to get a 2nd and maybe 3rd opinion. 

Let us know how you are and how else we can help. You will be in my thoughts and prayers!

Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 10:28am
Hi Christina,
 
I would echo Donna's comments about seeking a second opinion at Vanderbilt. My wife, Susan, is being treated there by Dr. Ingrid Mayer who is well versed in TNBC and is a member of the NCCN breast cancer guidelines panel. Susan has received excellent care at Vanderbilt and we love Dr. Mayer. We live in Knoxville, but find the round-trip drives to Nashville well worth the time.
 
Martin
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote christina1961 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 12:43pm

Thank you, Donna, Denise, Laura, and Martin!

I have decided to try to get a second opinion from Vanderbilt. It would be much easier to drive there than to Asheville if more chemo is recommended.  I see the oncology surgeon today, and will see my oncologist here in about a week.  I will keep everyone posted.  Thanks so much for relaying your personal experiences and for your prayers.

2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tania Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 1:13pm
Hi Christina - Sorry you are having to wrestle with this decision. I participated in the neoadjuvant trial using gemcitiabine/carboplatin and PARPi at Stanford. I had a very good response, but not complete. My oncologist had a measurement to assess "residual cancer burden" and corresponding prognosis.  This was developed at MD Anderson, but It has been replicated elsewhere.  I also consult at UCSF and they use this measure as well.  It has apparently been used across many different drugs, tumor types,etc. with consistent findings.  You may want to ask your doctor to have the pathologist grade this for you.  I have the paper from MDA if you are interested, just send me your email address. If your hospital is unfamiliar I think that Stanford could do it.  The statistics from this might really help you with your decision. It is calculated using tumor bed, remaining cellularity, nodes and % DCIS to give you a score of RCB 1, 2 or 3.  RCB 0=complete response.  Interestingly RCB 1 has the same if not slightly better (although not sure if is statistically different) prognosis than pCR.
 
I echo what Denise mentioned about a platimum based drug.  My doctor who was intrumental in the set up of the PARPi trial seems to think the active agent in this may be more the platinum than the PARP.  Many women, not all, have had a great response on this trial.  Had I not participated in the trial, Hope Rugo at UCSF would have mixed in platinum along side the standard drugs for me, based on research she is following.  With AC not giving you what you hoped for, this may be a good choice if you move forward.
 
With an RCB of 1, and having started at stage 1c with no lymph nodes, I still opted for an adjuvant round of TC x4, just to be sure, since there is not long term data on the trial drugs I took.  I had opinions all over the map, from absolutely do no more to go full blown ACT, but ultimately made the decision that I thought would give me the best peace of mind. For me the additional risk of toxicity was overshadowed by the possible benefit.  This is a highly personal decision and for me was the hardest in this whole journey.  I finished chemo yesterday and with it behind me, am glad I did it. For me, with BRCA and an aggressive tumor, I didn't want to give this thing as second chance at me!
 
To also echo on the radiation ... Stanford made immediate clinical recommendation changes based on the ASCO finidings on the 1-3 nodes. Two women who I went through this with thought they would not do radiation but the data was compelling enough and the recommendation strong enough that they both are doing it.
 
I thikn in most cases doctors like to prescribe any additional chemo before moving to radiation as the fnkal step., at least in the women that I know.
 
Good luck with this and know we are all sending support and positive thoughts your way.
 
Tania
DX 10/2010. 1.5cm, no nodes, grade 2. BRCA1+
Neoadjuvant chemo gem/carb/parpi trial.
Bilateral mastectomy 4/2011
Adjuvant chemo 4X TC - 5/11 - 7/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote christina1961 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 6:20pm
Tania,
Thank you for the information.  The MD Anderson residual tumor burden calculator was something I came across in my research.  I was very frustrated because my final pathology report did not address the % DCIS/IDC or the remaining cellularity of the tumor bed.  I now have an appt scheduled at Vanderbilt as soon as I can get in (middle of the month) - the radiation oncologist is going to see me two days later, do a planning session the following day and get me set up to start radiation the following week in the event that I do not get more chemo or they want to do the chemo following radiation.  I feel certain the additional pertinent factors in the pathology will be requested by Vanderbilt so I am not requesting it now.  I was leaning toward radiation based on what I had read even if I had had no positive nodes.  I agree, I do not want to give this stuff a second chance at me.  Congratulations on finishing your chemo!!!
 
I feel much better about all of this!  I've had so much trouble getting to sleep at night the last few nights; hopefully tonight I will get a good night's sleep.  It's back to work full force next week; I got the driving ok from my surgeon today.
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote christina1961 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 6:21pm
Martin,
I am going to Dr. Mayer, by the way!  Thanks again for the recommendation.
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 6:45pm
I'm so happy you were able to get an appointment with Dr. Mayer. We know several of her other patients (including some posters on this site) and we all think she is wonderful. Please give her our best and let us know what she recommends.
Martin & Susan
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2011 at 9:39pm
Christina, don't forget to up your doseage of Vit D3 in prep of the radiation!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote christina1961 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2011 at 12:40am
Mainsailmet,
I haven't heard about the D3 recommendation. I had begun to supplement it prior to surgery and was told to quit taking it. I suppose I can start taking it again now.
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote christina1961 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2011 at 12:58am
The only thing I'm a little nervous about is that I have to wait until the middle of next month to see Dr. Mayer and I could probably start radiation the first week of August.  How long is recommended between mx and radiation?
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2011 at 1:25am
Christina,

Please read the following links/threads about the importance of Vitamin D.  Most of us are deficient when diagnosed with Triple Negative Breast Cancer.  I was watching the Dr. Oz show on Thursday.  It was a rerun about Cancer.  He said the #1 Vitamin to prevent cancer was Vitamin D.

http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page24.html?KW=Vitamin+D3

http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1

http://www.vitamindcouncil.org/health-conditions/cancer/breast-cancer/


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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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2011 at 7:26am
Susan had surgery on December 9, then a second round of chemo which lasted until February 3rd (the first round didn't dissolve her tumor completely either), then started radiation in the middle of March.
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2011 at 11:34am
Generally radiation is set for about 6 weeks after a mast...but it will always depend on the healing of the patient and the surgeon is the one who will determine when you're ready. You can double team things a bit by having your first visit with the radiation onc, your initial xrays and tatoo, but that's about as much as you can overlap.
 
The D3 not only helps us with TN in general, it helps the radiation be more effective and in my case helps diminish the side effects of radiation. There are a ton of threads here on D3 and it's surely one of our best tools.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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