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marion66 
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Joined: Dec 31 2011 Location: Philadelphia Status: Offline Points: 13 |
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 Topic: need help with decisionPosted: Dec 31 2011 at 11:55pm |
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I have a 2cm tn invasive grade 2, diagnosed 12/23. I started with local hospital and have a lumpectomy/sent. lymph scheduled for Wed. However, the day before, Tuesday, I have a 2nd opinion appt with one of the best cancer hospitals and the best doc breast oncology surgeon and the the best doc medical oncologist (according to US News). Should I still get the lumpectomy this week with the local hospital, or wait for the surgery with the top cancer hospital?
Thanks!
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HappyGoLucky
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Joined: Apr 22 2009 Location: New Jersey Status: Offline Points: 454 |
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Posted: Jan 01 2012 at 12:18am |
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Dear Marion A wise man told me to get a second opinion when I had a recurrence. I didn't do that the first time. Talk it over with others. I am happy to say I went with the treatment that the second opinion suggested. this would be a yes from me girl. Love, Karen |
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2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 01 2012 at 1:59pm |
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I'm a firm believer in second opinions. I didn't get one when I was originally diagnosed, but sought 3 opinions with my recurrence. I'm very happy I did.
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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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: Jan 01 2012 at 2:41pm |
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I am in the same boat, diagnosed on 12/9/11 with surgery scheduled for 1/19/12. I am actively setting up a second opinion out of state and will reschedule surgery if needs be.
TNBC is heterogeneous since it is a disease entity defined by exclusion. Because of this, there is a lot of unsettled issues in the field. There is no validated targeted therapy and hence prognosis is not as good as the other subtypes. I believe that the path you take at the beginning will have a big impact on how things pan out down the road. Some questions to think about: 1) neoadjuvant vs adjuvant therapy 2) lumpectomy +RT vs mastectomy vs mastectomy +RT 3) having some of the tissue frozen down so if needs be in the future, they can extract DNA for genomic profiling for more personalized therapy 4) BRCA1/2 testing |
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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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HappyGoLucky
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Joined: Apr 22 2009 Location: New Jersey Status: Offline Points: 454 |
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Posted: Jan 01 2012 at 3:05pm |
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Lee
I couldn't agree with you more. Knowledge is power. I walked into the hospital with a 7 cm tumor and I went with all that was prescribed, surgery a/c and taxol ( and avastin clinical trial) . In hindsight I think a second opinion may have chosen neo adjuvant chemo or radiation to shrink tumor a more accurate attempt. Maybe not . Hope you choose wisely and go to physicians with specific knowledge of the subtypes. Good luck with everything, Karen
Edited by HappyGoLucky - Jan 01 2012 at 3:06pm |
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2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: Jan 01 2012 at 5:25pm |
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I remember when I got my 2nd opinion. The first opinion was at a local clinic where I was advised I would get a lumpectomy and they could 'save my breast' so that I wouldn't have a mast. A girlfriend called up and said, hey, I made you an appointment for next week at Fred Hutch in Seattle, call your local team and put things on hold. I was pretty alarmed as all I could think of was to get things moving and surgery seemed a bright light in my darkened life. But she's a smart cookie my friend and I decided, to go along. So I went from a 3 oncologist clinic through the doors of a giant cutting edge facility. What a 2nd opinion gave me that few of us talk about is an education. We are tossed into this world of strange new language, strangers and big machines that bombard us and suck our blood, yet somehow we have to keep a cool head. I really needed to get the 2nd opinion because on top of everything else I was hungry to understand more of what was happening to me as well as what I could expect.
You will be better prepared to make decisions after the 2nd opinion so I'd wait not just until you've had your 2nd opinion but give it a bit of time to digest as well. One thing to consider. Not every facility has access to every clinical trial available. The larger facilities will, simply because of their size, have more experience with TN and experience is important to us! Clinical trials are an important consideration for you because we are the up and comers for clinical trials and there are some great ones out there. AND, the statistics show that people who participate in a clinical trial have a higher survival rate.
Just try and hold on to the fact that it's not the speed with which you attack your tumor; instead it is the choices of attack that are specific to you that will grant you success. The first go round is the very most important to get right so that you won't have to worry about a 2nd round.
Oh, and if you get a chance, maybe you can visit the nutrionist at your 2nd opinion. You want your body to have all that it needs to be in high fighting mode right now and a nutionist can give you some good guidance.
Best of luck,
Mainy
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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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marion66
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Joined: Dec 31 2011 Location: Philadelphia Status: Offline Points: 13 |
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Posted: Jan 01 2012 at 5:37pm |
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Thank you all so much! I am so scared. I really want to live as long as possible. I am 45. I will probably put the first dr on hold. I am almost excited for my appt Tuesday at Fox Chase, as I feel I will be in better hands. I am worried that the tumor is growing each day and that I need it out asap. This will actually be my 3rd opinion, as I was at Penn last week, before knowing the TN result, and she was concerned it is too close to the nipple and that I might need a mastectomy anyway. She had me get an MRI and that result should be in tomorrow or Tuesday. So I hope to share that result with Fox Chase tomorrow. Again, thank you all so much. I do not feel so alone.
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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: Jan 02 2012 at 5:42pm |
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Hi Marion
I would be very interested in knowing what your oncologists recommend if you don't mind sharing. Lee |
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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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marion66
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Posted: Jan 02 2012 at 5:44pm |
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I go tomorrow for the opinion and will decide whether to cancel with the local hospital after (sent lymph injection at 3:30 and lumpectomy for Wed). I have a feeling I will cancel. Might it be they start me on chemo first? and then schedule mastectomy? How can we see lymph node problems before mastectomy?
I do want to write to you each and learn about your journeys. I had to teach today and might not have more time until later this week. thank you! Marion
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: Jan 02 2012 at 7:47pm |
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Marion, the argument for having chemo first is so that the oncologist can track by size and feel of the tumor how well it is reacting to the specific chemo he chooses for you. My assumption is that when you have surgery first to remove the tumor that you would not have that ability. The lymphs can also be felt during your appointments to check if they are shrinking and that's pretty much the standard way of verifying. I remember the first time my onc gave me an exam and raised his very bushy eyebrows to saw, 'The tumor is softer and getting smaller' followed by a wide grin. I wouldn't pass up that moment for anything, let me tell ya!
Best of luck to you tomorrow, you might want to take along a digital recorder as it's awfully hard to remember all that is said and it's really nice to be able to replay later.
M
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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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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jan 02 2012 at 10:19pm |
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Hi Marion,
Lots of caring and positive thoughts for your appointment tomorrow. You probably have a list of questions. They may already include the following four: 1. What are the pros and cons of chemo first versus surgery first? You may want to be consider that before you leave the office you have listed or made a chart with the pros and cons of each. Sometimes I found I thought I had the answer to a written down question. Then realized after I left I did not have the complete info I had hoped for. So, check your paper before you leave......that you have the pros and cons for both options. This may help you with your decision. 2. If a taxane ( taxol or taxotere or abraxane ) is part of the chemo plan, consider asking for the pros and cons of the taxane first versus last. There has been much discussion on the forum about this after a retrospective study from MD Anderson. The article is on the forum at: http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771.html 3. The pros and cons of all your treatment options. 4. For your situation, what is the reasonable time you have to make a decision. (plus all the good info posted above) With caring and positive thoughts, Grateful for today................Judy |
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lisadi1963
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Joined: Dec 26 2011 Location: Topeka, Kansas Status: Offline Points: 8 |
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Posted: Jan 06 2012 at 8:40pm |
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Hi Marion.
I was diagnoised 12/15/11 with IDC. I have seen my local surgeon and oncologist here. I am still waiting on my BRCA test to come back. It's been two weeks since I had that test done and the surgeons office just did the paperwork for my insurance company to prior authorize it. It was approved, thank goodness, but now they say it will be another 7 to 14 days. I feel like the cancer is growing everyday that we don't do something about it. It's so stressful. I find it hard to go to work everyday and get anything done. While I have been waiting I decided that I would get a second opinon too. I will be going to KU Cancer Center. I'm hoping to get the answers to many questions I still have. My original surgeon says I should have a lumpectomy, but then the results of my MRI show a spot on my other breast. They just say it looks "suspicious"! What does that mean? Maybe I should just have a bi-lateral mastectomy? I just don't know. I just want answers.
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marion66
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Joined: Dec 31 2011 Location: Philadelphia Status: Offline Points: 13 |
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Posted: Jan 06 2012 at 9:09pm |
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Hello all. I signed up for a clinical trial in phase 2called PrE0105. It will be chemo for 18 weeks, then surgery of my choice, then radiation if it is gone. The hope is that the tumor will shrink and disappear. The chemicals are: gemcitabine, carboplatin and Iniparib. I get the port Tues., another biopsy Friday, and the chemo will start the following Monday, if approved by insurance. I do also have that sense that it is getting larger, but from Dec 15 to Dec 29, it only grew .1 cm. I still want to ask about the trial in Judy's message. I could no longer concentrate at work( high school math teacher), and my last day was today. this is scary and I am trying to think positively.
Lee and Lisa, let me know what is happening with you! |
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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: Jan 06 2012 at 10:23pm |
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Hi all,
Just a few thoughts to touch on things i read on this page. False positives happen more often then not in the Radiology rhelm, so don't get too hung up until things are clearer and for sure. I know it is tough to do, but the alternative stinks. My first reaction when diagnosed was take the girls,I don't need them and hubby don't need them. I went to 4 surgeons all telling me that" Mastectomy does not decrease your chances for recurrance any more then Lumpectomy". Hmmm sorry ladies I just could not get my brain around that one. I was loaded with calcifications since 35 yrs old( higher risk for cancer), scar tissue from past biopsies( which can hide cancer), ya know what? I was biopsied the hell out of almost to the day a year prior to ME finding the lump, OH and it was the same breast that had like 4 different biopsies in. I might not have hit this thing as hard as some of you strong women here, but i hit it as hard as I could to my comfort level. Lumpectomy, A/C DD x4 every other week..T x4 DD every other week. Just had Double Mastectomy on the 27th of December with reconstruction. OMG this surgery was a hell of a lot easier then how I spend my time with Chemo and it side effects. Fatigue getting better, nails growing in pretty well now, bone and muscle pain hmmmm still there but good days and bad, chemo brain well working onthat doing brain games helps, peachfuzz on my head very soft and a welcome site. Sorry if I ranted but just a few random thoughts. Love N Strength to all, Looking very forward tyo a better 2012 We really are all survivors from the time we get that diagnosis, no matter how each of our stories end we are survivors of life, love, adventure, adversity and Yep even mountain climbing (what a mountain =] ) Peace, Natalie
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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HappyGoLucky
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Joined: Apr 22 2009 Location: New Jersey Status: Offline Points: 454 |
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Posted: Jan 06 2012 at 10:36pm |
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Marion and Natalie
and all, You guys are so strong . We all approach this disease from different perspectives and it is scary. I applaud you Natalie don't know if I would have gone that road, had the lumpectomy and now a recurrence. Marion we are all here holding each other up and I feel scared sometimes but I do not want it to get out of control. Praying for all. Karen.
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2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 06 2012 at 10:50pm |
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Marion66,
I had Gemcitabine, Carboplatin and Iniparib in the BSI-201 Open Access Trial. I found it very tolerable, with the biggest complaint fatigue and some low counts. I didn't lose my hair, just thinned a little. I thought this chemo regime was much easier than Cytoxan and Taxotere. Wishing you the best. 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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lisadi1963
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Joined: Dec 26 2011 Location: Topeka, Kansas Status: Offline Points: 8 |
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Posted: Jan 06 2012 at 10:58pm |
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Natalie,
I hope this question isn't to forward, but why did you have to have a double mastecomy after just having your lumpectomy? If that's to personal you don't have to explain. Wishing you healthy thoughts! Lisa
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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: Jan 06 2012 at 11:08pm |
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Karen,
We are all strong, we all have made the choices that we made that we were willing, confident and comfortable in making. You did Rads, I did not. If not anything I and probably all of us have realized that recorrances happens in all scenarios whether medical, alternative, nutritionaly or timeline. Some beat it and some don't, but we all go into it with the same goal ( i think) , to do our very best to beat this monster, maintain some facsimile of our quality of life and pray a whole lot that whatever higher power we believe in gives us strength and has mercy on us too. See i know already that if I have a recurrance one of my first thoughts if not the first will be" GOD DAM IT I SHOULD HAVE DONE THE RADS". Then I will be adding a new story to tell myself>>>>recurrance happens in all scenarios. If we knew that one perrrrrfect solution to all problems, then there would be nothing to make us stronger, wiser, more grateful or open to listen to everything. I love humor and silly goofiness, feels soo good in time that really suck. Kind of a vaca for a time from this thing called life. Difficult to find in tough times, but it feels really good. Along with taking time for yourself (always the difficult thing for me), yoga is great, completely loving it (light stuff no hard can do right now). Strong we stand, Natalie
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Natalie
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Posted: Jan 06 2012 at 11:25pm |
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Lisa,
Not too personal at all, any time I can offer anything for support I will (don't know too much though lol). I just wanted the thing out as soon as possible so I could get to the chemo faster and to attack systemically, and my team agreed. Easier recovery from a Lumpectomy then a Mastectomy. Unfortunately Chemo tough for me to recover from to get to the Mastectomy quick. It was 10 weeks from last treatment. I wanted it much soon, like 3 maybe 4 weeks out but my fatigue was really bad. My white cell count was o.k though. I know some girls leave it in for chemo to see if it is working, ahhh not me. My very best and Be strong, Natalie |
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: Jan 06 2012 at 11:48pm |
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Hi Marion
You are way ahead of me! I was finally able to set up my 2nd opinion trip to UCSF next week. My surgery (lumpectomy) is scheduled for the following week. I am not decided about neoadjuvant therapy -- the breast surgeon here in Michigan is steadfastly recommending lumpectomy over neoadjuvant therapy (they said the tumor is small 1.7 cm by US although by MRI it was 3 cm, so unclear what is real size at this point). What made you decide on the trial? Lee |
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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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