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Topic: < 5 mm HER2+ IDC...why NOT chemo???

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 27, 2012 09:57AM

dancetrancer wrote:

I've read thread after thread and all of the info, opinions are running together in my head.  I've only had since yesterday to absorb all of this (was up til 1 a.m reading).  I know this is a controversial topic, but I want to hear why you WOULDN'T recommend chemo for < 5 mm of IDC her2+ (mine is 3 mm).

I had my tests run at Emory (I was there for a 3rd opinion on radiation).  They found the IDC (3 other facilities missed it, including UAB) and tested it for Her2.  Transferred my results to UAB.  Found out I was HER2+ yesterday.

UAB told me yesterday afternoon, lets cancel your radiation, meet with onc to discuss chemo next week.  Go ahead and rip your rads stickers off.  So I did.

Today they call me and say, nope, we talked to the onc and they said chemo isn't warranted with your small cancer.  Come back in to get the marks drawn back on, b/c we want to start rads ASAP next week, you are already behind schedule.

So, I've got a call into Emory to see what their onc says.  WTF.  I'm so sick and tired of sleepless nights, changing opinions, thinking I'm going to die if I don't do chemo (OK, I know that's overreacting, but you all know how it goes) and convincing myself to do it, then I hear, nope, you don't need it.  I could do without this emotional rollercoaster, thank you very much.  Now I'm afraid to NOT have chemo and am paranoid about recurrence.

HELP talk me down off the ledge please!  (LOL, just kidding, but d*mn!) 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 31, 2012 05:08PM Kim137 wrote:

Testing was done on the micro-mets. I'll be getting rads to the entire right side and medial aspect of my chest. A parasternal lymph node decided to appear on my CT scan after my mastectomy....how nice of it to show up last minute ;) Thanks for sharing your story and all your acquired information. Cancer has all these gray areas that my anxiety disorder would rather not deal with, but apparently cancer does not care if we ever have peace of mind. So, I do not feel guilty at all for poisoning this little creep to death ;)

DCIS w/ micro invasion. Micro mets found in sentinel node. Dx 9/9/2011, DCIS, 6cm+, Stage IB, Grade 3, 1/16 nodes, ER+/PR-, HER2+ Surgery 9/9/2011 Lumpectomy: Right Surgery 9/30/2011 Lymph node removal: Right, Sentinel Surgery 10/13/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/17/2011 AC + T (Taxol) Targeted Therapy 1/5/2012 Herceptin (trastuzumab) Surgery 4/25/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Hormonal Therapy 5/3/2012
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Jan 31, 2012 05:58PM suzieq60 wrote:

LadyGrey - good to see you posting and in fighting form :)

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jan 31, 2012 06:33PM dancetrancer wrote:

You are most welcome Kim, and I so appreciate you sharing your story.  Blast that beast with all you've got!  And I can relate oh too well to the anxiety, unfortunately. 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 31, 2012 07:10PM - edited Jan 31, 2012 07:11PM by Liz08

dancetrancer- if you would feel more comfortable having chemo & herceptin, I highly doublt your oncologist would object for fear of a lawsuit. I will also share a story that I believe I may have posted but not sure so I will post it.  During one of my follow up visits, my oncologist was really down, so I asked her if everything is OK? We've developed an awesome relationship over the years. It was obvisous she had a rough day & was upset so she shared with me that she had a young patient like me who was so focused on minimizing the risk of recurrence to zero without taking the risks of treatment into account.  Well, long story short this young patient was diagnosed with a tiny her3+++ tumor & insisted on treatment & ended up with chemo induced lukemia.  Although VERY rare, it can happen.  Ultimately, you have to talk in depth with your oncologist about your unique pathelogy & be sure the benefits outweigh the risks in your case. We all can share our stories & offer advice but your pathology is unique & you have to make a decision that you feel comfortable with living for the rest of your life without second guessing yourself.     

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes
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Jan 31, 2012 07:26PM fluffqueen01 wrote:

LadyGrey-loved the description of your pathology. Mine is very similar, so I am going to steal it.

Not to get you all paranoid, but herceptin can cause nail problems. I made it through chemo with my digits buried in ice. They looked great. I was all smug. Kept them in ice as a precaution while on just herceptin, but nit as religiously. I have three more to go, and my nails are very thin and somewhat sensitive. I quit getting the shellac manicures because it hurts to take the stuff off. I am usinf a nail hardener and streghthener which helps. Some herceptin folks have had really gross nail issues. So.....just a little awareness in case things should start to get weird.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jan 31, 2012 09:06PM dancetrancer wrote:

Thank you all for the precautions/concerns.  I am not downplaying them in my head, and I'm pretty scared of them.  Feel free to keep sharing all issues.  I prefer to make a decision knowing fully all the pros and cons. 

I just spoke (via email) with one of the authors of the 2008 MDAnderson study, and she said their facility is still recommending chemo/herceptin to t1A and t1B patients.  She said they did a second analysis and look at the risk by age group and use those tables to discuss with the patients their individual risk:  Age and survival estimates in patients who have node-negative T1ab breast cancer by breast cancer subtype.

I don't recall this particular study being posted before, but if it has, and has already been discussed, feel free to point me that direction.  

I'm going to get this study tomorrow and take a closer look.   

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 31, 2012 11:55PM suzieq60 wrote:

dancetrancer - don't freak about re the post above regarding leukemia - I think that has been found to occur rarely with Andriamycin - I've never heard of it occurring from TCH. I walked into my oncs office and told him no way I was having AC-TH becuase of my reading that.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 1, 2012 05:06AM Kim137 wrote:

SusieQ is correct. Adriamycin is associated with increased risk of chemo related leukemia. My oncologist discussed those risks with me before I started it. My course was 4 dose dense Adriamycin & Cytoxan, followed by 4 dose dense Taxol.

DCIS w/ micro invasion. Micro mets found in sentinel node. Dx 9/9/2011, DCIS, 6cm+, Stage IB, Grade 3, 1/16 nodes, ER+/PR-, HER2+ Surgery 9/9/2011 Lumpectomy: Right Surgery 9/30/2011 Lymph node removal: Right, Sentinel Surgery 10/13/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/17/2011 AC + T (Taxol) Targeted Therapy 1/5/2012 Herceptin (trastuzumab) Surgery 4/25/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Hormonal Therapy 5/3/2012
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Feb 1, 2012 05:23AM dancetrancer wrote:

susieq58, thanks so much for that information.  I did some addtional research and after reading the article on the livestrong website, CHEMOTHERAPY DRUGS THAT CAUSE LEUKEMIA, it appears the drugs most known for this small risk are:  Cytoxan, Adriamycin, Platinol, Alkeran, and Mustargen.  (I looked up the trade names for the generic ones listed in the article.)  

So, yes, AC-TH and TCH (if cytoxan) could potentially cause chemotherapy induced leukemia.  Nothing was mentioned about Taxol, which is what I am seeing appears to be the preferred "softer" chemo regimen for very small tumors.  I need to do more research on it and also Herceptin to fully understand the risks.

 fluffqueen, that does sound very scary about the nails...don't worry about freaking me out - I know I need to hear it all.   I need to know exactly what I am thinking of signing up for (if I'm even eligible, being I'm so far out from surgery - so this may all be a moot point) and try to take an unbiased view of all the risks vs benefits.  I really do appreciate hearing all viewpoints, so that I know what the issues are to consider.  

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Feb 1, 2012 06:54AM - edited Feb 1, 2012 07:17AM by Liz08

Susieq58- the purpose of this forum is NOT to discredit another member's insight.  It's RUDE & DISRESPECTFUL!  Are you an oncologist with extensive experience in breast cancer treatment?  

  

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes
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Feb 1, 2012 07:01AM - edited Feb 1, 2012 07:02AM by Liz08

dancetrancer-  I recall a member being given Navelbine for a small her2+++ tumor.  Don't know much about it but I believe the member's name was swimangel who received it.  I think it's a mild form of chemo but was given to her so the she can receive herceptin as well.  Wishing you the very best in what ever you decide. 

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes
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Feb 1, 2012 07:05AM dancetrancer wrote:

Lizzy, now that you say that, I do recall that as well about Navelbine.  I will add it to my list of things to discuss with the oncologist and also to research.  Thank you!  
Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Feb 1, 2012 07:52AM DianeNMil wrote:

DANCETRAINER,  I apologize ahead of time if my response is redundant, I did not read ALL of this thread but I DO know that how to treat under 5mm her2+ is still controversial.  I believe the last san antonia symposium findings were to treat aggressively. I had 2 <5 lessions and saw 2 oncologist.  The first said TCH and the second said taxol + herceptin.  The fact that I had 2 tumors made both oncs strongly recommend chemo.  I went with the second because she was highly recommended by my BS and she thought the TCH was too aggressive and explained that the really important drug in my case was the Herceptin(cut recurrence by 50%) and for some reason that they don't quite understand the herceptin is more effective when given with chemo.

Dx 10/10/2011, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2+
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Feb 1, 2012 08:13AM dancetrancer wrote:

Thank you Diane for sharing!  I also have another thread I started for t1A sisters to share their experiences.  It's just getting started but you may want to check it out and possibly share your experience to help those who follow in our footsteps trying to make this difficult decision.  

 calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Feb 1, 2012 02:44PM suzieq60 wrote:

Lizzy - I wasn't being rude - I was merely qualifying which drugs are a risk. When people read things like "chemo can cause leukemia", it's necessary they understand not all chemotherapy does.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 1, 2012 11:19PM fluffqueen01 wrote:

Susie and lizzy-i think I read it as intended and didnt think it was derogatory either. It is a risk, but it is a small risk.One shold be aware, but also realize that it is a very small nmber who actually get it, and you sholdn't panic thinking that you will automatically get it.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Feb 2, 2012 06:56AM - edited Feb 2, 2012 06:56AM by Liz08

susieq58 & fluffqueen01 - In my above post, I wrote "VERY rare" with the word "VERY" in all CAPS.    So tell me in English, what does "very rare" mean to you??? 

The definition of "VERY rare" in on-line dictionary defines "very rare" as "doesn't happen very often".   

So, where are you getting that I said that you will "automatically get" chemo induced Leukeima???

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes
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Feb 2, 2012 07:28AM dancetrancer wrote:

I interpreted both posts as coming from people who care very much about what happens to me, and want me to know in full the risks (albeit small or large) of what could happen, whether I decide to choose chemo or not.  Although I may panic when I first read something, I am level-headed enough (I think!) to go do my own research and try to find out the degree of the risk.  

I know that everyone on this board has my best interests at heart, and for that, and I am so, so TRULY thankful for all input.  So, ladies, I know feelings may be hurt on either side (I understand that, my feelings are easily hurt, too), but can we please call a truce?  I don't want my thread to go off in a negative direction with people angry at each other.  You all have helped me so much with your varying opinions, and we all are here with one common goal - live longer and happier and fight this damn beast. 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Feb 2, 2012 12:50PM Moonflwr912 wrote:

Very well put, Dancetrancer- Thank you , i was going to spill some oil on the water as well and will now assume it is all quiet.  We are all here, when no one wants to be a member of this particular club, but we all try to make the best of it.  So forward we will all go.

I will have to update my Dx on my signature with the path report i just got, and I am still trying to read all the important bits- Does anyone remember which discussion T1c , etc was discussed in?  Or is all of that in the Path Report section?

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Feb 2, 2012 04:06PM dancetrancer wrote:

 Thank you Moonflwr912.  I believe this is the post you were thinking of perhaps:

community.breastcancer.org/for... 

Hey all, saw the onc today.  He continues to stand by his recommendation of no chemo/herceptin.  I have a dance class to get to soon, but will update more details and how I feel about this later (still uneasy).   Right now, time to forget about cancer for a while and go shake my booty! Smile 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Feb 2, 2012 05:54PM suzieq60 wrote:

dancetrancer - did you ask him if his recommendation was because it is only grade 2? That might be why...

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 2, 2012 06:23PM Kate60 wrote:

Hi Dancetrancer

Can I pip in here please with my two cents worth?

I had two microcalcifications one 3mm the other 4mm.Tiny right? yep. But I am HER2+ and once this was found out (after surgery and I was just looking at having rads and that would be it) I was told due to the aggressivness of the cancer I would definately need Herceptin, and to have Herceptin you have to have it with Chemo. 

My initial reaction, probably because this was a last minute game changer and was never on the cards for me, was that I wouldn't do it. But.. once I the shock wore off, and I read up about HER2+ cancer etc, I realised that I HAD to have it. If for now other reason than a little thing called 'Peace of Mind'. If for me, the cancer did come back years later down the track, I wouldn't want to beat myself up with the "if only's". If it does come back, then at least I know I have done everything I possibly could to give myself the best chance.

My cancer was so small, and no invasion or SN involvement, so technically speaking, it's all gone from my body and from this point forward all treatments are to prevent it coming back - if little cells have slipped through and are lurking elsewhere, ready to one day rear their ugly little heads again.

Yes chemo sux. I have only had one treatment thus far, but it is doable. The Herceptin side effects scare me moreso than chemo and I am really struggling with loosing my hair (which has just started shedding badly - buzzing it off is immenent), but all these things are temporary states and one day it will all be over and done with. I don't want to live life looking over my shoulder.

If like me, you have a tiny cancer but want the book thrown at it, please find another MO who will treat you, or just insist. This is your life and a major decision. All the experts have the facts and figures at hand. You have your heart, mind and soul in yours.

Cheers

Kate xx

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" - Dr. Seuss" Dx 10/16/2011, IDC, <1cm, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Feb 2, 2012 07:25PM suzieq60 wrote:

Kate sweetie - herceptin SE's are virtually non existant :)

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 2, 2012 08:12PM dancetrancer wrote:

susieq, nope, he didn't even mention grade.  It was all about tumor size.  If I were 5 or 6 mm he would treat me.  He said the studies do not break out t1A from the t1B and are small numbers of patients anyways so one can't draw strong enough conclusions to warrant the risks of chemo/herceptin.  When I asked him about how some docs say biology of the tumor (HER2) should be considered instead of just looking at size, he agreed biology matters, but continued to reiterate that the studies are not there to say that it matters in as small a tumor as I have.   Basically, nothing tips the scale to treat - he has never treated anyone under 5 or 6 mm with chemo/Herceptin.   He wouldn't consider even one of the "lighter" regimens for for my size tumor.   He estimated my 10 year distant recurrence risk as 5%.  Again I brought up the MDAnderson study of a 15% distant recurrence risk, and he continued to say that it was a combo of t1a,b patients, you couldn't separate them out to determine risk by size b/c the numbers of patients in this group are too small to begin with - so I can't apply that study to my size tumor.  I asked him if my young age would make my any higher risk (and mentioned the MD Anderson study again), and he said not enough to warrant treatment other than Tamoxifen.  This is despite acknowledging Tamoxifen does not work as strongly with HER2+ patients, but it still works.  He said if I were his sister, daughter, etc. he would not treat me.  

He mentioned that even if we did it, insurance may deny it b/c the tumor is so small.  We asked if we paid out of pocket would he be willing to consider even just Herceptin alone (LOL, figured we'd pretend we could just to see the answer - told him we knew it cost ~ $100K and we could swing it).   Nope.  I just wanted to make sure money was not an issue in the decision making process.  It wasn't .  

I asked him why facilities test tumors this small if they are not going to use the test for any clinical treatment purpose.  He said it is just standard to run the test.  He acknowledged that HER2 is not routinely run on DCIS b/c it doesn't change treatment.  But they do run it on all IDC's.   I'm a bit p*ssed that if the test means nothing, why is my insurance billed for it, and why am I put through such emotional havok?  To what end?  Is it just so they can track me like a lab rat to see if I recur or not?  Sorry, I just really, really wish this test was never run on me.   

One interesting thing - I asked him about if chemo had been recommended, would it have been too late to start.  He said no, there is no real good study that can show one way or the other how soon you have to do chemo after surgery.  Interesting.   

When I told him I know of at least 4 t1a's here that have recurred with mets, he seemed a bit surprised, but then he said well 4 is not that many on a message board statistically (I know he's right, but I had to point it out to him that I know people DO recur.)

Even though he completely said no and gave me no options except Tamoxifen, I really loved the guy.  He spent lots of time with us, was completely open to our questions and was not defensive at all when I brought up questions, and generally was a really nice guy and easy to talk to.  

AussieKate, thank you for your two cents. Smile  I have two more oncology opinion appts set up for next week.  We'll see what they say.  Just so you know, my onc today actually said the side effects of Herceptin are not terrible.  He said regarding the heart damage, the risk is relatively low, and usually reversible.  (Yet he still wouldn't prescribe even Herceptin alone for me.  This again is because he doesn't believe small tumors need this treatment.) 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Feb 2, 2012 08:27PM suzieq60 wrote:

Dancetrancer - it will be very interesting to see what your other opinions say.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 2, 2012 09:08PM rk85 wrote:

DT, are the other oncs you are going to see able to treat to you if you like their opinions better?  If they are out of town or otherwise unable to take over tx, then are you back to the above onc who won't consider the chemo/herceptin? 

Also do you know if your insurance will pay for it if an onc agrees chemo/herceptin is adviseable?  I'd be ready to fight if they tried to deny.

Dx 8/2011, DCIS, 4cm, Stage 0, Grade 3, 0/3 nodes, ER+
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Feb 2, 2012 09:19PM dancetrancer wrote:

Hi rk!!!  These two other oncs are within 20 minutes of my house - YES!  I'm really excited about seeing the one b/c he also has a whole website about cooking for cancer so he combines healthy lifestyle with his treatments.  

I don't know if my insurance will pay for it; apparently others who have had treatment for < 5 mm are getting theirs paid for (or if not, and you are someone who is getting denied payment for this particular situation, please PM me.).  I did call Herceptin, and they told me if my doctor orders treatment, they have a form he/she fills out to get it pre-certified.  So it looks like I'd be able to find out issues beforehand, if there are any.   

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Feb 2, 2012 09:28PM Moonflwr912 wrote:

Good news DT  happy for you.

3

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Feb 3, 2012 07:35AM Maja2213 wrote:

Dancetrancer - I initially wrote to help you with your decisions and now this has flipped with all of your research helping keep me up to date!  Thanks for posting the study up above and all of your research.

In one of your posts you mentioned that your oncologist gave you the old "this is the treatment I would recommend for my wife, sister, etc..."    Just a funny aside in all of this, you must not lose the humor.  My oncologist actually joked "and I know your going to ask me about my wife, sister and so on.  Almost everyone does.  Well, how do you know that I don't secretly hate them?"

And I know everyone is different and I am only 5 weeks since my final Herceptin infusion, but the side effects were minimal and my last echocardiogram three weeks after treatment was fine.  If I could avoid chemo but they came to me and said new studies recommend another year of Herceptin, I would probably do it because overall, Herceptin alone was easier than surgery, chemo, radiation, and the tamoxifen.

Dx 10/1/2010, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Feb 3, 2012 08:27AM dancetrancer wrote:

Maja - ba, ha, ha, ha!!!!  I  love your onc's sense of humor!!!!!  OMG, you made me snicker, I really needed that!

So glad to hear you find my research valuable.  Sometimes I wonder if I am going on and on and on and on...LOL...however if just one person finds it helpful, I guess I'm not going overboard!  

That is really good to hear about the Herceptin - I keep hearing that overall it is tolerated well and that the majority of the time any heart issues can be reversed if caught in time.  How did you do with Taxol?  I've been reading that thread and see quite a few have developed neuropathy problems, had nosebleeds, etc.  Just curious! 

BTW, one other interesting comment made by my onc yesterday.  He said in Europe they are giving Tamoxifen for 10 years.  He said although data isn't in yet, he expects they will find 10 years is more beneficial than 5.  Until then, though, he said in the US we must follow guidelines.  It makes me wonder if this is another reason why he is so firm on the no tx for < 6 mm - perhaps his facility firmly follows guidelines, and does nothing off label.  However, MDAnderson, which again earned the No. 1 spot in U.S. News & World Report's annual rankings of the best hospitals for cancer care in 2011, does treat these patients (on a case by case basis, of course).  I guess they also believe, of course, in their own research, even though the sample size was small and mixed the t1a,b group together.  Things that make you go hmmmmm....

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.

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