Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

BlairK

I have been posting on the DCIS section and now am moving here because my wife's diagnosis and possible treatment options have changed.  Initially, my wife was diagnosed with DCIS in both breasts.  On October 14th, she had a double mastectomy with immediate reconstruction with gummy implants.  She also had bilateral sentinel node biopsies which were negative.  We received the final pathology report on October 27th.  The final pathology report said that the left breast was all DCIS with surgical margins of 16 mm and Stage 0.  The right breast pathology changed.  It is now Stage 1a.  It is now both DCIS and invasive ductal carcinoma IDC.  Grade 3, comedo type with necrosis, solid and cribform, ER positive, PR negative, 3 foci of IDC - 1 mm, 1 mm and 3.5 mm.  Unfortunately HER2 positive.  Surgical margin of IDC is 1.5 mm and DCIS is 2.0 mm.  The Breast Surgeon referred us to a medical oncologist and we will have a consultation on Monday.  The Breast Surgeon also said radiation was not necessary.  The Breast Surgeon mentioned that in her opinion, my wife will need to have herceptin, chemotherapy and arimidex.  I would appreciate hearing from you if you are in a situtation similar to this, have taken herceptin or are about to take herceptin, have had chemotherapy or are about to have chemotherapy.  Thank you very much in advance for your information-sharing and advice.

dragonfly1

BlairK I'm not sure why some MOs choose Cytoxan vs Carboplatin as our "C" and I don't know the big difference in the two. The taxenes are largely the same. I notice you are now on the TCH thread which is great. It has been my biggest source of info and support since the beginning. You should find others there who had/have Cytoxan rather than Carboplatin. We have some amazing women on the TCH thread who are quite expert in their knowledge. You'll find it helpful when your wife starts the actual chemo and needs day to day tips on SE management. I'll see you over on the TCH board...

LouLou40

BlairK, they base treatment and stage on the biggest tumour when BC is multifocal, they do not add the size of all the tumours together for staging and treatment. I had multifocal BC 20mm and 15mm, staging is only based on the 20mm.

Your wife's biggest tumour was 3.5mm which is very small, her Onc would have decided on the less toxic chemo combo without over treating her with more aggressive Chemo for such a small tumour. I have seen quite a few women with small Her2+ tumours receive the same Chemo as your wife will be getting. Her prognosis is excellent and I wish you both well for the journey ahead.

Lou 

TheLadyGrey

Blair, my experience is virtually identical to your wife's - diagnose with DCIS and found out yesterday with the full pathology report that I have 6mm high grade, HER++, maybe +++, etc.



I meet with the oncologist next Tuesday.



At this point, I am reasonably certain that there is NO POWER ON EARTH that could persuade me to do chemo. Based upon the resaerch I have done, the only statistically significant improvements in outcomes over the last 50 years relate to hormone therapies, which I am open to considering.



I'm not organic, nor am I an alarmist. I'm a retired trial lawyer with a high degree of skepticism for "Breast Cancer, Inc." which appears from my jaded point of view to play on extremely high pharmaceutical profit margins, defensive medicine and a patient population that is never more than a step away from a "Pink" moment.



Get a second opinion before you start on a course of action that has far reaching consequences. Understand EXACTLY what it means to lose heart function on Herceptin and the percentage of patients for whom that is a permanent disability, what EXACTLY it means to have neuropathy which can be permanent, EXACTLY what it means to have chemo brain which can be permanent, etc., etc., etc.



I'm astonished at the near universal chorus I hear from breast cancer patients of "well, I gained 30 pounds, got a port, lost 3 days every three weeks for six months, lost heart function, my hair, my nails, my taste buds, my MIND, but golly gee willikers don't get me wrong - I sure am grateful for all these drugs even though I have mets in my brain, lungs and liver!"



Golly gee willikers, I wonder why the drug companies are raking in the cash from all these compliant oncologists and grateful-to-be-disfigured-bald-vomiting-terminal but perennially grateful PINK patients rather than devoting some material percentage of those Pink stained dollars to better therapies - even - GASP - a CURE, as in "Race for" ... well, maybe not race but walk briskly...on second thought, stroll, ok, in actual fact, meander.



I'm demanding more. Consider having your wife look into exactly how sensible this protocol is.



I'm demanding more.

suzieq60

I just read a sad story of a patient who was not given herceptin because her tumour was too small - 2mm invasive, the rest DCIS. In Canada, they don't give it to really small cancers - well, now she has mets and in only 1 year.

Blair - this study is a restrospective one which looked at people who had herceptin and those who didn't - worth looking at.

LadyGrey - you should also take a look.BTW you are wrong - herceptin has made a tremendous difference.

http://jco.ascopubs.org/content/28/28/e541

BlairK

Dear loulou40 - Thank you very much.  I have reached the conclusion that with the TCH regimen, Cytoxan is used more for after surgery with early stage breast cancer and Carboplatin is used more for larger tumors and later stage breast cancer.  Carboplatin can have more serious side effects such as kidney damage and nerve damage than Cytoxan.  I am feeling more comfortable with the medical oncologist's recommendation of Taxotere plus Cytoxan plus Herceptin as I have previously described.  Next week, my wife will visit the same medical oncologist alone and his treatment center.  I am in China on a business trip.  So the key will be whether or not my wife is comfortable.  So far she is.  She is beginning to do her own research but not on this bulletin board.  The medical oncologist has over 20 years of experience and is only a 10-15 minute drive from our home.  He received a "Top Doctor" award in our state.  Thanks again for your posts.  I just want my wife to get through this without serious side effects and to be cancer free.

TheLadyGrey

I agree.



To my understanding, Hercepin is a hormone based therapy, and as such can make a material difference in outcomes versus chemotherapy. As I understand it, Herceptin is given in conjunction with chemo but is not chemo.



That said, it has serious, alarming, potentially permanent side effects, particularly related to heart function, and those should, in my opinion, be very carefully weighed against the demonstrated statistical improvement in recurrence.



Dying of Herceptin induced heart failure is not a more noble death than dying of metastatic cancer.

BlairK

Dear The LadyGrey - I am sorry you ended up being blindsided like us with HER2 positive and IDC.  Everything that we are talking about here has benefits and risks.  Again, the trigger for chemotherapy and Herceptin is the HER2 positive.  As I see it, HER2 positive is a high risk result.  If my wife does not have the recommended treatment, then the risk is that the IDC can go in to the bloodstream and spread to other organs and then be a much more serious and life-threatening situation which will be even harder and more difficult to treat.  With treatment as outlined here, the risk is the various side effects including heart side effects with Herceptin.  The chemotherapy boards have thousands and thousands of posts.  As many women on the boards have minimal side effects from chemotherapy as those that have serious side effects.  Every person will have to make the key decision - am I willing to forgo treatment and take the risk that the cancer may spread into other organs and of course it may not spread or is the risk of side effects from treatment with the benefit of cancer reoccurence risk reduction better while accepting the risks of side effects.  I know what my view is (I vote for the treatment) but since my wife will meet one-on-one with the medical oncologist next week, as with the double mastectomy decision this decision will be hers with me being here to do research and provide love and support.  We still have some time and my wife and I have already discussed the possibility of a second opinion.  Thanks again for your post.

suzieq60

Herceptin can cause temporary heart damage, not permanent - it's andriamycin that does the permanent damage. Studies have shown that herceptin works better in combination with chemo. They are currently doing a trial where they are giving herceptin only for women over 70.

suzieq60

LadyGrey - sorry if I sound authoritative, but I have done extensive research over the past 2 years, to the point where I told my oncologist which chemo I was having - which turned out to be exactly what he was going to recommend. The thing is, that if it ever comes back, or I end up with mets, I will know I did everything I could, as opposed to being sorry I refused treatment. I lost 22lbs, most women do lose some weight. The SE's are very manageable if you are given the right meds. I certainly never threw up. The only thing that annoys me about it all is my now very curly hair.

BlairK

Dear susieq58 - I have the perception that the risk of heart damage is relatively low.  Do you have any statistics or percentages for the risk of heart damage on herceptin.  It certainly is one of the most scary aspects of all of this but the risk of HER2 positive cancer mestasizing into other organs is equally scary.  Again it all comes down to an analysis of benefits versus risks.  I am not clear on one thing - are you having chemotherapy and herceptin or are you contemplating it?  Thanks again for your post.

suzieq60

Blair - normally tumours less than 5mm are not treated with chemo etc, but since your wife had 3, that may be why they are recommending it. BTW - you are such a wonderful husband to become so involved in this - your wife is one lucky woman.

suzieq60

Blair - I had TCH x 6 and finished herceptin last December. They monitor your heart very closely before and during treatment and at the first sign of trouble they will stop. It is more likely to get heart damage if you are also having Andriamycin (no way I would let them give that to me), which is usually only given for node positive patients.

Sue

Scrabblelady

I must disagree with LadyGrey.  Herceptin is not a hormone based therapy.  It is a targeted drug which acts on the growth receptors..

  In a previous post LadyGrey mentioned all the side effects from chemo.  Yes, you do lose your taste, your hair, possible neuropathy, and possible lower heart function.  However, the taste buds return, the hair grows back, Heart function is monitored and it is reversible when Herceptin is stopped. Herceptin is stopped if the heart function decreases too much. No one can tell how a person will react to their chemo regimen. Perhaps, I was fortunate, but the pre-meds prevent any nausea.  My onc recommend l-glutamine to prevent and/or lessen neuropathy.  I did experience a littel in my fingers and toes.  But it disappeared about a month after I completed  chemo.  I also had Adriamycin, which has possible cardiotoxicity.  According to my ECHO, Adriamycin did not affect my heart function. and I only have 2 more Herceptin treatments to go. being younger than 60, in good health, and never having chemo before, I was in a low risk group for cardiotoxicity.  With that in mind I accepted the fact that I needed chemo.

  I'm not crazy about paying the drug companies all the money for these drugs, but I'd rather fight the cancer that I have, than let it grow because I might have bad side effects from my treatment. 

BlairK

Dear susieq58 - My wife will have TCH (Cytoxan) x 4 and herceptin for a year and arimidex for 5 years.  Our medical oncologist added up all the tumors together to make his assessment which differs from one post in saying that it is the size of the largest tumor.  Three small tumors or foci of invasion plus a fourth area of suspected microinvasion in the original biopsy plus High Nuclear Grade 3 and HER2 positive (and ER +) all add up to the thinking for the recommended treatment plan.  The medical oncologist also has at least two other patients if not more currently on the same regimen and they are doing well.  My wife will have baseline MUGA scan next week.  And she will have an additional one-on-one visit to the medical oncologist next week and formulate her own opinion.  At the end of the day just like with the decision for the BMX, it is my wife's decision and she is the patient.  I just want my wife to live a long cancer free life.  My wife is more involved in reading and networking to her support group in this situation with chemo and herceptin compared to the BMX situation and I am glad for that.  The medical oncologist is on-line and has already answered one e-mail that I sent from China.  I am in China on a business trip until November 17th and then I return home to take my wife and kids on vacation and then the treatment starts on Nov. 29th.  During this period - any information I can get on TCH and herceptin and side effects would be much appreciated.

BlairK

Dear susieq58 - My wife SNB on both sides were negative.  The medical oncologist is following NCCN guidelines and also believes that Cytoxan has less side effects than Carboplatin.  I rejected Adriamycin as soon as I read about it for the same reasons - it also causes heart damage potentially especially in combination with Herceptin.  The medical oncologist said that he keeps Adriamycin in reserve for later stage cancer.  He believes that my wife's survival chances are 95 percent and the reoccurrence risk is 2-3 percent.

BlairK

I agree totally with Scrabblelady's post.  My wife will have TCH (with Cytoxan) and not AC - TH.  Herceptin is a targeted therapy against HER2 and tamoxifen and ariimidex are hormone therapies.  However I am curious that Scrabblelady had Adriamycin with a small tumor of less than 1 cm.  Scrabblelady is ER negative and my wife is ER positive.  Scrabblelady - would you be kind enough to share your medical oncologist's thinking with us.  I am very glad that you are almost finished and sounds like you are doing well.  However, the adriamycin treatment sounds like a more aggressive treatment for Stage 1a.

suzieq60

Blair - some oncologists do give AC-TH - it may depend on age as well as nodes. I know my onc really well as he is also my husbands onc. When I told him I was having TCH he smiled - wrote it down and ticked it and then asked me the side effects. He is very used to us going in armed with research and doesn't mind a bit. I am also on Arimidex - he was very worried how I would do on it as I have arthritis, but so far it's OK (17 months). How old is your wife? I was 57 at diagnosis.

Herceptin costs our government $75,000 - we don't pay for it ourselves and I am so grateful I was able to have it.

I remember the worst treatment was the first, I think I lay in bed and cried for days. BUT once we could see what side effects I had, I was given the appropriate drugs to stop them and managed very well for the rest of the time. The worse one was leg pain - a few days after each treatment. My onc prescribed a pain killer (Digesic) and Claratin (24hr tablet) and it worked, so I would start taking them on day 3 after chemo and didn't suffer at all. As I said in response to one of your other posts, avoiding constipation is the most important thing. I only made that mistake once. As with the other SE, I would start taking Sennacot a day or so after and had no problems. My onc prescribed Emend - given on the day of tx and 2 tablets to take each day after and I never once felt like being sick.

I hope your wife decides to go ahead - I got really upset when I read that lady's story today on the Stage IV thread. I really cannot understand anyone refusing treatment where HER2 is concerned - it didn't take much research to see it's essential.

Please let us know how her onc visit goes.

Sue

suzieq60

Blair - I forgot to tell you. My onc said I had a 23% chance of recurrence and that having chemo/herceptin would halve that. That was enough for me - no brainer.

BlairK

Dear susieq58 - "G'day".  My wife is 52 years old and she will be 53 in January.  My wife's BMX was SNB node negative on both sides.  As I articulated my views, I think it is all a benefit versus risk analysis.  I think my wife agrees with my view and she will have the treatments.  I think cancer that has metastisized is horrible and I think dealing with the risks and side effects of chemotherapy, herceptin and hormone therapy is much better than taking the risk of the cancer spreading and going to a more advanced stage.  Thank you for all your information sharing.  She will definitely go ahead.  Her main thoughts right now are on the need for a second opinion and in her own way trying to understand as much as possible about the treatment since I am far out ahead on the learning curve with my intense research.  The final thing is we both like the medical oncologist and have trust in him so far.

suzieq60

Blair - did you look at the link I posted above - nice flat line for recurrence when given herceptin. I look on it as it wasn't nice being diagnosed but it's great it was found early and there is something we can do to try and prevent it coming back. I only say try, I am not under any illusion that being node negative means I'm safe.

I got upset about that lady on the Stage IV thread because she was denied treatment and look what happended. So, it just shows you only 2mm of cancer is enough. Surgery doesn't always provide a cure. Early stage women in New Zealand had to fight to get herceptin - they finally won but it was a long battle. I am glad I wasn't living there then - I am a Kiwi by birth but have lived in Oz most of my life.

Hugs to you both - with you by her side she will be just fine.

Sue

BlairK

Dear susieq58 - I read the link that you posted and cut and paste the summary of the research study below.  The article describes patients with the same profile as my wife - HER2 positive and small tumor size.  There is no doubt now that my wife will accept and begin the treatment on 11/29.  You and dragonfly have been especially helpful but I appreciate all the posts and help and support from everybody.  I am feeling overwhelmed by the enormity of all this but I must keep a positive outlook and optimism that my wife will come through this OK and live a long happy life.  I am still very interested in finding out as much as possible about the Taxotere - Cytoxan - Herceptin combination or even finding research papers and studies on it.  Again I am very interested in Cytoxan versus Carboplatin in the TCH regimen.  Thanks again.  BlairK 

Adjuvant trastuzumab combined with chemotherapy is now a standard of care for HER2-positive breast tumors that exceed 1 cm and/or pN+. We believe it should also be considered for T1ab, pN0, HER2-positive tumors, especially in the presence of other poor prognosis factors (ie, high grade, high MI or HR negative). Of course, the incremental gain in absolute benefit observed by adding trastuzumab-based therapy in this series cannot be predicted, and long-term toxicities should be carefully considered on an individual basis during the decision-making process. As trastuzumab has proven its efficacy in the adjuvant setting exclusively when combined with chemotherapy,^5-10 we would recommend the administration of adjuvant trastuzumab along with chemotherapy when considered. We also propose that patients with T1ab, pN0, HER2-positive breast tumors have access to current adjuvant trials of HER2-targeted agents.

BlairK

http://journals.lww.com/oncology-times/Fulltext/2009/02251/Short_Course_of_Docetaxel_Cyclophosphamide__.10.aspx

I found a research study on Taxotere + Cytoxan + Herceptin.  Overall encouraging results.

BlairK

http://www.penncancer.com/pdf/TWEED.pdf

Here is a link to a tremendous power point by the University of Pennsylvania on chemotherapy treatment options including herceptin.  By the way, I went to the University of Pennsylvania. 

suzieq60

Blair - I had carboplatin - the taxotere probably had the worst side effects - not really sure. Any platinum drug is nasty - my DH had oxalyplatin and reacted rather badly to it but still made it through all but one of the treatments. He had a bowel cancer met in the lung and is alive and well nearly 5 years later - mainly due to successful surgery.

I don't know about the difference between carboplatin and cytoxan, but I do know there is only about 1% difference in outcome between AC-TH and TCH so I was happy with TCH. I just did a bit of a search and it seems cytoxan is usually given as part of the AC-TH regimen and carboplatin as part of TCH - then again things change all the time and your onc would be up to date on the latest protocols.

Sue

BlairK

My wife decided (on her own since I am in China) to get a second opinion on Monday and then meet again with the first oncologist next Tuesday.  The second oncologist requested my wife to bring the pathology slides with her.  The second oncologist is also a medical school professor.  My wife plans to bring the second opinion back to the first oncologist who she will meet again next Tuesday.  We plan to stay with the first oncologist since he is only 15 minutes from our home and also very highly regarded as is the second oncologist.  My wife will also have a bone density test, MUGA heart scan and full body scan.  Please keep the posts coming.  I will keep updating.

suzieq60

Keep updating us Blair - it will be interesting to see what the 2nd onc says.

BTW - to me a BMX is much worse than chemo - I had lumpectomies because I'm a big chicken, yet had no trouble agreeing to the chemo.

Sue

orange1

TheLadyGray -

In the large BCIRG006 trial, not one person died of herceptin induced heart failure - but many (literally hundreds) died of Her2+ cancer.  Have, or don't have whatever treatment you want.  But you may want to learn about the actual benefits and risks of chemo and herceptin before making decisions or offering opinions.

BlairK

My wife had no trouble with the mastectomy because she thought everything would be over at once.  It has not turned out that way.  My wife is open to chemo.  The one area she would be very resistant to would be radiation and so far radiation has been deemed to not be necessary.  I have not even looked at my wife's chest because she does not want me to yet.  I am grateful for susieq58.  Can we get more posts - especially before next week with my wife's second opinion, tests, and visit with the first oncologist.

BlairK

Dear orange1 - Where can I find this study.  Can you share the details of your situation and treatment with chemo and herceptin.

suzieq60

Orange - I agree - it is very frustrating sometimes