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Newly diagnosed - chemo before surgery?

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AndreaB View Drop Down
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    Posted: Jul 30 2011 at 5:42am
I was just diagnosed this week with Stage 1 TNBC, invasice ductal carcinoma.  I'm 38 with a 4 year old and 1 year old.  I have a 2 cm tumor in one breast.  I was lucky enough  to get two opinions from breast surgeons this week.  The MRI, mammo, and lymph node ultrasound do not show any cancer in the nodes, but surgery will confirm.  I'm waiting to meet with medical oncologists next week.  First surgeon wants to get the surgery done this week and then move to chemo.  It will be a double mastectomy since lumpectomy has been ruled out due to calcifications and personal choice. 
 
The second surgeon recommended chemo first, but could not articulate why in a way that made sense to my husband and I.  This recommendation was made at a top cancer institution in FL.  Does anyone have any experience/stats on why the chemo would be done first?  It seems to go against the common sense that my cancer is growing quickly and should be removed as fast as possible before spreading elsewhere.  The surgeon alluded to prognosis and needing to know if chemo works as the reason but refused to "talk numbers".  If I go the chemo first route, it will be months before surgery.  My tumor is less than 2 cm.     
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Sorry you have to be here, but glad you found the site.  The main reason to do chemo first is to see if your tumor is responsive to that particular chemo. It's called neoadjuvant chemo and you'll find lots of posts here about it.  Some folks see their tumor disappear completely, even under the microscope.  My tumor was about 5 cm and it almost disappeared.  My positive lymph node disappeared completely and the nodes around my neck which lit up on pet scan but were not biopsied disappeared from imaging.
 
At first I just wanted it out and insisted I would have a mastectomy.  I am glad I did the chemo first, as I know it was very effective.  I did end up having a lumpectomy with axillary node removal due to the recommendations of my surgeon and medical oncologist.  I followed surgery with more chemo (just to be safe) and radiation because of the previously positive node.  Lots of decisions to make here.  You will also find some postings about the order of chemo, with current recommendations leaning toward taxol rounds being done before AC happens.
 
Good luck with your decision making.  Everyone here is very supportive.
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Hi Andrea,
 
Welcome to our site. My wife, Susan, and I have found a wealth of information, support, and comfort here and hope that you will too. I'm sorry you had to join us but very happy you found us.
 
Susan was diagnosed one year ago and we were presented with the same dilemma that you're facing. Our first reaction was "get this out of me as soon as possible...today...right now!" We were originally referred to a surgeon who, of course, wanted to due surgery first. It wasn't even suggested that we see an oncologist prior to surgery which, unfortunately, seems to be typical. After we recovered from the initial shock, we decided to seek a second opinion at a NCCN (National Comprehensive Cancer Network) hospital - Vanderbilt in our case. This decision totally changed Susan's course of treatment. Susan had neoadjuvant chemo (chemo before surgery), then surgery, then more chemo, and finally radiation. Diagnosis was July 15th, but surgery was not until December 9th. Radiation was completed at the end of April.
 
The reason that you may want to have chemo first is because you will be able to measure the tumor before and after chemo to see how well the chemo worked. In some cases, the first round of chemo will dissolve the tumor completely. In Susan's case, it shrank the tumor but did not dissolve the tumor completely and since she received the chemo before surgery, the doctors knew that she would need a second round of chemo after surgery. Some hospitals may even give two rounds before surgery.
 
As for advice, I am not a medical professional but am offering these suggestions based on our personal experiences: 1)That said, first of all - don't panic as it will cause you to make a hasty, and perhaps unbeneficial decision. You should act with deliberate speed, but don't rush to a decision. You have time to consider your options. 2)Read everything in the resources section of this site if you haven't done so already. 3) My strongest recommendation is that you seek a second opinion at a NCCN or NCI hospital. Triple Negative Breast Cancer is an uncommon and unusual type of breast cancer and you are most likely to find a doctor experienced with TNBC's subtleties and nuances at one of these hospitals. An additional benefit is that you are more likely to be offered participation in a clinical trial specifically tailored to TNBC at a NCCN or NCI hospital. If you will let us know where you live, we can help you find doctors and hospitals near you that are recognized for their expertise in the treatment of TNBC.
 
I pray that you will find the best doctors for your care and that they will be guided to offer the best treatment choices for you. You may also want to seek out some support groups (in addition to this site which is invaluable) and facilities. We have been blessed with a wonderful amount of support from a non-profit group called the Cancer Support Community.
 
Good luck with you journey and please let us know how we can help you.
 
Martin & Susan


Edited by TNinTN - Jul 30 2011 at 11:15am
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 AndreaB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2011 at 10:07pm
I am eagerly awaiting my MO consults this week to clear up the confusion.  You're right, the MO cosult should happen first.  The surgeon we saw at the top 20 cancer institute in our area did a very poor job explaining why I would do chemo first.  It was a disappointing experience.  MRI, mammo, and ultrasound have pointed to no lymph node involvement.  Given this, I am seriously questioning why I would delay surgery given the possibility that it could spread  to the lymph nodes while I'm undergoing chemo.  Again, I still have lot more to learn and will see what this week's consults bring.  I'm not a candidate for a lumpectomy due to calcifications so shrinking the tumor doesn't help me. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2011 at 11:23pm
The benefit of knowing whether or not the initial round of chemo shrinks the tumor really has nothing to do with the shrinking of the tumor, itself. The tumor is a known cancer site that can be easily removed with surgery. If it was known with 100% certainty that the only cancer cells in your body were in the tumor, surgery would be the only treatment necessary. The primary benefit of knowing whether or not the chemo is effective at reducing your tumor size is that it indicates whether or not the chemo you receive is effective at destroying cancer cells that may have already spread elsewhere in your body. Surgery only treats the site of the known tumor, but chemo treats your entire body. If you know that the chemo shrinks your tumor, then you also know that it is effective in destroying any microscopic cells that may have migrated elsewhere. Since chemo targets rapidly multiplying cells, the chance of spread while you are undergoing chemo is significantly reduced or perhaps even eliminated. The benefit of neoadjuvant chemo, therefore, often outways any risks. Radiation is sometimes given after chemo and surgery to destroy any remaining cells near the tumor site that may have survived surgery and chemo.
 
 
Another way of thinking about it is this. No one dies from breast cancer that stays in their breast. Breast cancer is only a problem when it spreads elsewhere. Surgery treats only the breast. Chemotherapy treats the elsewhere. Since the elsewhere is the big problem, you want to attack the elsewhere a.s.a.p. The ability to measure the tumor before and after neoadjuvant chemo gives you some idea as to whether or not the chemo you received was effective on the elsewhere.
 
My wife received one combination of chemo drugs before surgery and an entirely different combination of chemo drugs after surgery. If the neoadjuvant chemo had destroyed her tumor, she would not have had the second round of chemo. If she had surgery first, there would have been no way of knowing that the first round of drugs was not completely effective.
 
Of course, your medical oncologist will be able to offer a better explanation, but I hope this helps.
 
Martin


Edited by TNinTN - Jul 30 2011 at 11:59pm
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 Susie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2011 at 7:20am
Perfect explanation!!
dx 10/08,age 56,.75 cm. Stage1 Grade3,lumpectomy,SN neg..,AC 12/08-02/09,35rads,03/09-05/09,BRCA2+(E1415X),06/09,oophorectomy 10/09,
Zometa - IV/mo.,07/09-08/10, lumpectomy #2 10/20/10 NED
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Very nice description, Martin.  Thanks.
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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 31 2011 at 11:29am
Martin,

Good explanation!  Thanks.
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 bashamk Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2011 at 11:49am
I'd like to add my two cents...for what it's worth.
 
I had surgery first, then chemo and radiation. It's been two years since surgery (YAY!), but I don't know if the chemo actually worked. So, I'm waiting for the other shoe to drop.
 
If I could do it all over again (and God willing, I won't have to), I would definitely do chemo first. I'd like to think I wouldn't worry so much if I knew the chemo worked.
 
BTW, heading in for an MRI tomorrow morning, wish me luck!
dx 6/25/09 age 45, IDC TNBC,
stage 1, grade 3, 1.5 cm
Lumpectomy, T/C x 4, 33 rads
Dx Dec 2015 Stage 4 metaplastic
Cell growth on nerves in shoulder to rt arm; mediastinal nodes; Bone; skin mets
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Dear Andrea,

welcome to our family....

I think Martin has given you an excellent explanation and I too, am not a medical professional, but I wanted to suggest that if you are in FL you see

Dr. Edith Perez at Mayo Clinic in Jacksonville 

or-
Dr. Mark Pegram at Sylvester, Univ. of Miami

They are both TNBC savvy and I believe that each of them could explain things in an understanding  way to you and your husband. I know time is of the essence and I can try to help you get an appointment quickly, if you wish...I am honored to know them. I will send you my contact information.

As far as statistics, it is a very difficult project when TNBC is involved. At times, TNBC is extremely sensitive to chemo and at times not..that is the major advantage to doing neo-adjuvant chemotherapy, as has been mentioned above. You will know if the chemo suggested is working. The goal would be a pCR, a pathologic complete response.

Whatever you decide, we all wish you the best of luck and we will be here for you as a resource. 

all the best,

Steve
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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p.s. Andrea-

has anyone talked to about seeing a Certified Genetic Counselor and being tested for the BRCA mutation? At your age, you definitely should, even absent a family history of breast/ovarian cancer.

again, good luck

all the best,

Steve
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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Andrea-heres my 3 cents-I had a 5cm tumor-had the chemo first(4 rounds )it shrunk down to less than 1 cm-then lumpectomy then 4 rounds of taxol then radiation.  The only thing i would have done differently would be to have the double mast. I did not know at the time that I was BRCA 1 +, so after I found that out(during radiation)I opted for the double.  I echo Steves suggestion on getting tested, I did not know of any family history of B.C. until late into my treatment.  My first appt. they wanted me to go straight to the surgeon, but when I seeked out a second opinion at Mayo clinic i saw a breast doctor, onc then a surgeon. I wish you the best and you have come to a great site with very helpful, knowledgable and compassionate people.
DX IDC TNBC 5/08 age 50 Stage 2 no nodes FAC chemo lumpectomy taxol rads/9/09 DX Stage 3 fallopian tube cancer, surgery(too many "ectomy's to post) intraperitoneal chemo cisplatin,carbo,taxol BRCA 1+
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Hi, I am new here.  My son's friend has been newly diagnosed with TNBC at the age of 30.  She is currently seeing oncologists to find the best options.  I do not know all the clinical details, but know that she has IDC with a 4.5 cm tumor L breast, and another same side that was biopsied two days ago--waiting for results.  She has PET scan today.  BRCA is pending.  She is probably going to have neoadjuvant chemo, possibly starting the next couple of days.  Has anyone got experience with oncologists in MD/DC?  She has seen Dr. Fred Smith in Chevy Chase and will be seeing Dr. Isaacs at Georgetown today. She is overwhelmed and her family lives out of town, so we are trying to put together the best support team we can. Martin, your explanation is so clear, thank you so much!! If it is OK I am going to copy it so we can use it to explain her treatment options to others.
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Dear lss4cg,

welcome to our family. very sorry you have to be here on behalf of your son’s friend but I think it is important that you are trying to help.

I would suggest 

Dr Tatiana (Tanya) Prowell
Johns Hopkins
Baltimore MD

I think I may be able to help get an appointment quickly so I will send you my contact information if you would like to call...from my experience once a patient starts a new chemo regimen a second opinion oncologist rarely interferes with the treatment plan.

all the best,

Steve




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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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2011 at 8:08am
Originally posted by lss4cg lss4cg wrote:

Hi, I am new here.  My son's friend has been newly diagnosed with TNBC at the age of 30.  She is currently seeing oncologists to find the best options.  I do not know all the clinical details, but know that she has IDC with a 4.5 cm tumor L breast, and another same side that was biopsied two days ago--waiting for results.  She has PET scan today.  BRCA is pending.  She is probably going to have neoadjuvant chemo, possibly starting the next couple of days.  Has anyone got experience with oncologists in MD/DC?  She has seen Dr. Fred Smith in Chevy Chase and will be seeing Dr. Isaacs at Georgetown today. She is overwhelmed and her family lives out of town, so we are trying to put together the best support team we can. Martin, your explanation is so clear, thank you so much!! If it is OK I am going to copy it so we can use it to explain her treatment options to others.


Welcome to this site and so glad you are reaching out to help your friend.  A good support team is very important especially if close family members are not around.  Please stay involved and come back often to post your questions or just let us know how your friend is doing.

Have your read Jennifer Griffin's story?  She is the Fox News Correspondent who was diagnosed with TNBC.  I believe Dr. Isaacs is her oncologist as she mentions it in her blog.

[Quote from blog:
We arrived at Georgetown (the Lombardi Cancer Center). Greg reminded me of the famous Vince Lombardi quote: "Winning is not the most important thing - it's the only thing.".
I chuckled and told him how when Annalise was heading out the door to soccer on Saturday - I wished her luck and she reminded me: "We don't play for a tie, mom." That's my girl.

Met with Dr. Isaacs - my wonderful Canadian oncologist. And this is where it gets interesting - and yes, James, I buried the lead!
She measured the tumors and after one chemo session: they had shrunk from 9 cm by 8 cm to 6 cm by 5 cm. She was grinning from ear to ear. It shows we chose the right chemo protocal and now it's a matter of pushing through. Incredibly good news so soon. She's a genius. I told her "I'll take it."
]


http://jengriffinblog.blogspot.com/2009_10_01_archive.html

Donna


Edited by 123Donna - Aug 17 2011 at 8:46am
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: Aug 17 2011 at 9:56am
Dear lss4cg,
 
Please feel free to copy my explanation and use it in any way that may be helpful. I'm sorry that your son's friend has been diagnosed with this disease at such an early age, but grateful that she has your support. If you should have any questions the wonderful members of this site will generously share their knowledge and experiences to help you, your son, and his friend get through this.
 
Please keep us posted as to how she is getting along.
 
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 kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2011 at 11:29pm
Iss, look in the resource section on this site for info that may be helpful. I think a printable sheet of questions ready for your dr. amongst other tips for those newly dx.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 5:59pm
Hi everyone,
I would like to pick up this thread again since I was just diagnosed and am going through the decision making stage.  I am currently being seen at the cancer center at the U of M. I learned of my TNBC dx only a couple of hours before seeing the surgeon, who was the only member of the tumor board that was dispatched to see me. She did not offer neoadjuvant therapy as an option -- I raised it --- she hesitated and (I could have kicked myself) I filled in for her (too small; actually not that small by US, 1.7cm). 

I am curious as to how many people on this forum had neoadjuvant therapy offered?
It would be most helpful to list the following:
age at Dx, tumor size, stage, BRCA1/2 status if known, therapy, outcome

I am still trying to go through the medical literature on this topic, but as with most things, it is controversial and not standard of care as far as I can tell,

Thanks,
Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 7:07pm
Addendum:
I would greatly appreciate any information anyone may have about neoadjuvant versus adjuvant chemo for TNBC; pros and cons.
Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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