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James123 View Drop Down
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    Posted: Dec 31 2018 at 12:31pm
Hi I just had surgery after 15 rounds of Chemo 4 Red Devils and 11 Taxol ; no Carboplatin was used.  I had a 2.2 Cm in Breast and node involvement.  After surgery my surgeon says it is a good report starting that the pathology report came back showing 1.2Cm in the breast which she states she got clear margins and 2 positive lymph nodes with micro cancer still in them.  She removed all of my lymph nodes.  Iím not so sure I feel good about report. I got a second opinion at my local Unversity Hospital and the oncologist there assured me that I was in good hands with my current oncologist and that not all oncologist use Carboplatin as itís not the standard of care. I am scared now. When I met with my oncologist before surgery she did a needle biopsy of node and said it was 10% estrogen and for me to move forward with surgery and she would decide if I need additional chemo after surgery.  My surgeon says she thinks I will need additional chemo.  Can anyone help with any feedback.  I am concerned about reoccurrence. I have a friend who received the carboplatin and she had a complete response.  I am praying for complete healing from the almighty and trusting these doctors know what they are doing.  

Any feedback would be appreciated 

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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: Dec 31 2018 at 1:40pm
You can ask about additional chemo, like Carboplatin or Xeloda and if they think there will be any benefit for you.  It's a tough decision when a patient doesn't achieve a complete response to chemo and what to do following surgery. 



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 rstar Quote  Post ReplyReply Direct Link To This Post Posted: Dec 31 2018 at 8:39pm
Ask your doctor if your cancer has the basal phenotype or non basal. It seems that Carboplatin is more sensitive to high HRD score which is often being expressed with the basal phenotype. You can push for both like I had mentioned before, Carboplatin n then Xeloda. That way you'd feel much better as you pretty much cover everything. I've heard of a few doctors doing that so it is doable
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 31 2018 at 10:06pm
thank you so much.  She told me she could use the carboplatin after surgery so Iím going to push for it .  She also said they can use Xeloda as well. I am also going to get Radiation. I understand their are survivors that come through all of this. 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2019 at 4:45pm
I just got copy of Pathology report and my RCB SCORE is RCB II. Can you tell me what that means?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2019 at 8:41pm
RCB stands for Residual Cancer Burden n it's mainly being used as a prognostic tool. Since yours is number 2, it just tells your oncologist that you require additional treatment to prevent reccurance, in your case chemotherapy.

Edited by rstar - Jan 02 2019 at 10:18pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2019 at 9:23pm
Thank you and can I ask one more question what does lymphovascular space invasion mean?  On my report it said it was identified and multiple foci.

I am consumed with concern over this situation.  Do you know of survivors who went through all of this and then received additional Chemotherapy and did well?  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2019 at 2:56am
Hello James, I'm so sorry you are going thru this. I think the place you are, having the outcome you have and needing further treatment is the most stressful time thru this maze. Because of the size of your residual tumor, and the lymph involvement it certainly seems like you need additional chemo. I had a recurrence in 2016, after being cancer free for 7 years. I 'd done AC, T the first time and it worked. This time I did Carboplatin and Taxol and got PCR. Did you have a lumpectomy, or a single or double mastectomy? If you did a lumpectomy I'd guess you plan on radiation? If so, I'd definitely push for chemo first, with rads the last thing you do. You mentioned before you had a second opinion at a University hospital? If it was before surgery I'd go back and get their opinion on treatment now. You're a perfect scenario for a second and even third opinion if you don't have complete clarity and confidence going into starting more treatment. Your doctor should have a face to face appointment and explain all of your pathology report and answer all your questions. If you've not seen the second opinion dr. Since surgery I'd get all of your pathology - the actual slides and whatnot sent over and get their pathologist to do a new report as well. That's a Full Second opinion, it's what I did. 
You are doing all the right things, asking all the right questions - you're doing very well with this very hard situation you're in! Know that you'll get it all sorted and have a new plan in place soon. Find time to relax and enjoy your lil treatment break! If your anxiety is too high, if your not sleeping talk with your doctor and get medication to help you through. You need rest to heal, and build up your immune system during this time. If you end up with a free week before starting the next thing consider a vacation to get away from it all!
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2019 at 3:12am
Thank you so much keyless.  I meet with my oncologist on Monday and I am going to push for additional carboplatin and the  Xeloda.  I have read on this site women experienceinh reoccurrences during radiation treatments.  I am in the will of the Lord and continue to praise him through all of this no matter the circumstances.

As far as the second opinion when I
Met with them they my oncologists was EXCELLENT and one of the best in the city and that I was in good hands. They said not every oncologists uses carboplatin as itís not the standard of care and they said there was no data supporting that using carboplatin impacted the overall survival.  I just donít know what to think.  My sister thinks I need to take a trip to mD Anderson.  Also the second opinion said that Xeloda reduces reoccurrence rates and itís part of clinical standard of care

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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2019 at 11:08am
Originally posted by James123 James123 wrote:

Thank you and can I ask one more question what does lymphovascular space invasion mean?  On my report it said it was identified and multiple foci.

I am consumed with concern over this situation.  Do you know of survivors who went through all of this and then received additional Chemotherapy and did well?  

I'm not too sure but I believe it has to do with the invasion of the cancer to the lymph nodes. As far as receiving platinum chemotherapy post surgery, there's actually a trial that tests both cisplatin / carboplatin vs xeloda for residual disease so Im hopeful that there's a potential benefit in it.

Btw, regarding what your onc said to you "not every oncologist uses carboplatin as itís not the standard of care and they said there was no data supporting that using carboplatin impacted the overall survival." - that truly pisses me off...obviously other oncologists use it for a reason cuz it has been showing a benefit to some patients when added in reducing the tumor size with the goal of achieving a PCR. True, it hasn't showed an overall survival benefit yet because non of the trials that have tested carboplatin were powered to do so, though we all know that a PCR has an impact on improved survival. I don't expect carboplatin to be used on a patient with a small cancer that has no node involvement but in your case and many others in my opinion, that shouldn't have been a question. At least you have gathered all the information you need now to make the best out of the situation.


Edited by rstar - Jan 03 2019 at 11:28am
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Thank you so much 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2019 at 12:05pm
How good your primary oncologist is has zero bearing on getting a second opinion. There is no tried and true "standard of care" for the situation you are in right now. Whatever you do, the treatment plan will be made up based on the doctor - only one single doctor if you don't seek more opinions - "thinks" is the right thing. I was in the same situation with my recurrence - it just doesn't happen like it did to me so there were no protocols to follow. I go to an awesome University research hospital and I love my oncologist. I went to MD Anderson for a second opinion, thank God! It was the MDA Drs suggested treatment plan I went with and I got a complete response. If you can go to MDA definitely go! It blew my husband and I away! Steve here on this site is a patient advocate and he got me in to a world renowned Dr.. Steve is SagePatientAdvocate here on this site, he knows all the best doctors for TNBC around the world, reach out to him if you need help. he's our guardian Angel Heart 
My plan was to do 6 months of Xeloda after my surgery, unless I got the PCR - which I positive I would not get. But since I did, all my doctors said there was no need for the Xeloda.
FYI - I'm going to say it outloud....I passed the two year Mark the week after Thanksgiving for being cancer free. Because of a nagging pain issue I got a full body bone scan and every blood test there is to do and.... I'm all clear. Incredibly healthy actually, except for a stupid lumbar spine issue I'm going to have surgery on in February but... It ain't cancer and it won't kill me 😁 so hang in there, you will get thru this and get your life and health back!! 

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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