Stage I ER/PR+ Her 2+ No node involvement

[Petesmom]

I was diagnosed with a recurrence last year, 7mm tumor, ER/PR+ and HER2+, no nodes. I had a mast and was put on Tamox. I was 52 at the time still premeno and opted to have my ovaries removed so that I could take an AI. My onc did not want me to have chemo as he felt that the risks outweighed the benefits. Like CLTann, ladies like us may be in the minority. I was comfortable with my onc's decision and still am. You have to do what is right for you.

Petesmom

[SusanV]

Hi Everybody,


My FIRST visit with the Onc tomorrow morning at 10:15 am.... wish me luck. Thanks to your posts, I am going to ask questions about my path report, and also ask about the oncotype test. I will also ask some questions about chemo and her 2 - and chemo and her 2+. I will be back to post with all the news and information that I receive.

My husband, my parents and my brother are all coming with me tomorrow, and I am sure glad about that! 5 heads will be better than 1. At the moment, I would like to get as aggressive as possible with the treatment. Hopefully the onc will agree. I haven't met him yet, so I am not sure what type of doc he is.

Have a good day guys

Love to All

Susan V

[SusanV]

Pete's mom,

I am sorry to her about the recurrance. Stay strong, and it sounds like you are very on top of your treatment. Which is the best place to be. I am hoping to be a little more on top of mine tomorrow morning.

Sincere Best wishes and loving thoughts to you

Susan V

[CLTann]

Best of luck, SusanV. Just a word of caution: aggressive treatment is not necessarily the best treatment. Patients in your group mostly do not need any chemo treatment but the medical panel always advocate chemo for two primary reasons: not to get sued and more monetary gain. Please go read the flaxseed posting and take an objective look at all options. There is also articles about the cancer spread caused by biopsy that make us wonder. Why are the medical people insist on doing biopsy while knowing the obvious risk of secondary tumor that will likely occur to the patients. In China, a palpable breast tumor is operated on without biopsy first and the biopsy is done while the patient is still on the operating table.

In the final analysis, one has to make up her own mind on how she wants to be treated. I sincerely wish you the best.

Ann

[panicked911]

Hi Susan:

Like you, I am a triple positive, node negative w/ wide clear margins - stage 1. I was diagnoised almost a year ago and am being treated at alarge NY cancer center. Here is what my onc told me when I was going through the treatment decision making process:
My surgeon who i adore - ordered the oncotype test and it came back n th high range. When the oncologist saw it she said for Her 2 positive women it is a waste of money because to much emphasis in the score is placed on HER2 status and with us triple positives the results are "skewed" - you were lucky that your isurance compnay is paying for it - i am still battling with mine over the $3,400 bill. The compnay will go to bat with the appeals but so far I am on round three and it ain't looking good. Knowing what I know now, I am sorry i did it.
As for the type of adjuvent treatment - alot of it depends upon how highly triple positive you are - i am considered "highly" positive ( er 80% and pr70% ) thus hormonal treatments are most likely to work. I started on tamoxifen ( i was 43 at diagnosis and now where near menapaus) and switched to arimidex which has a much higher success rate with someone like me. To take arimidex I decided to shut down my ovaries with lupron injections ( monthly) at some point when all of the data is in I willrpobably remive my ovaries - for now enough surgery - I have the onc check my hornobal levels regularly and so far so good. I am also one of the minority here who is doing a year of herceptain w/out chemo - After much debate and enormous amount of research - and reliance on my oncologist who was running the herceptain trials from the very start, this was the best option - The one thig i will tell you is that it is important to do weekly herceptain while doing radiation - which is a must with a lumpectomy. I am now doing herceptain every three weeks and will be done with all of this by Thanksgiving. After tomorrow- only three more left. My treatment regimine is considered very aggressive by all standards. The one thing I have also learned is that where the screening is done (MRI's mamos, sonos) is as important as the treatment. Mine was caught on a fluke and totally missed by my regional hospital.I really good treatmnt center will be able to tell is something is amiss dense breasts or not.
I begged my surgeon to "take them off" she calmy worked with me for over a week to see that it wasn't necessary and there was no medical benefit in doing so.
Hope this helps and good luck,
Susanne

[Dianaq]

You might also want to ask your ocg. if you are pre-men about taking Heceptin and an ovarian ablation verses Chemo and Herceptin.

[SusanV]

Hey everybody,


Back from the onc visit...Here's the update. I am going to have my first chemo treatment on Tuesday, Sept 5th at 12:45 pm. I feel good about this treatment route. Next will be herceptin and tomoxofin. Inquired about the oncotype test, and was given the same info that Panicked 911 posted in her thread. Based on the her 2 + and the ER+ PR+ the test results will be "skewed", and show a "High" range result no matter what. The outcome of this test would not change my choice for treatment, and therefore would not benefit me personally. My next big decision will be made after the results of genetic testing which I will have done on Sept 25th. The results will take 28 days to get, but if I do posess the gene, I will likely opt for the mastecomy as well as removal of my ovaries. Have any of you all had the genetic testing done? Just wondering??? I also stopped at a salon and made an appointment to look at wigs tomorrow. OH BOY !! I do have long hair, and plan to donate it to locks for love. I am going to find that phone number tomorrow, unless one of you happens to have a 1-800 number. Tomorrow morning I am going to have my first MUGA test...and some blood work. Thanks for all the help & info

Love to all of you

Susan V

[Hopeful]

Earlier in the thread, Dianaq posted:

>>I just read a study that said, chemo was more of a benefit for her2- patients. It also stated that for women with her2+, node neg. pre-men. that herceptin along with ovarian ablation and not chemo works better or as well as patients with her2- and chem.<<

Dianaq, can you provide any information about how to find this study? I would very much like to read it.

Thanks,

Hopeful

[sadie]

I opted for the aggressive treatment also.
AC x4; Taxol w/Herceptin x12weeks; Herceptin 1 year total; 30 rads; Started Arimidex after rads.
My onc told me I was borderline for getting chemo (1cm); She said she would recommend the same treatment to her sister or mother.
She told me that although all the cancer was gotten out with the lumpectomy, there is that very small chance that 1 little cell "got away" thru the bloodstream.
She said the chemo would take care of that.
She now tells me I can expect to live a long and healthy life!

[Dianaq]

Hopeful,
I found this info on WWW.healthcentral.com.
I am thinking seriously about this

[Dianaq]

HOPEFUL,
My gut feeling is not to have chemo. It has already been stated the chemo has no extra benefit for postmen. women that are her2+ because they no longer produce the excess estrogen. I think my ong. suggest chemo because it will put me into menopause and stop the estrogen. But if I can stop it with ovarian ablation and get the same results, why would I want to go through Chemo?

[Hopeful]

Dianaq,

My "gut" feeling is the same as yours. I am stage 1, 1.3 cm with 9 mm invasive and 10% intermediate DCIS, clean wide margins, sentinel node negative, ER+ 80%, PR+50%, HER2+++ by IHC, intermediate grade (B/R 7), Ki-67 boderline (low) 11%. My onc felt more comfortable doing chemo, and talked me into the Oncotype test, which scored at 41 (30% chance of recurrence) to try to convince me. As I said in the thread I started on that test, the pathology and the Oncotype do not seem concordant to me (of course, this is what the Oncotype people are selling - their test is better than the pathology report). I am currently doing radiation and Herceptin, and will continue on Herceptin alone for the balance of the year, and start Femara when I complete radiation. In the end, we have to do what we feel is right for us, and that is what we are doing. No one can make a choice for another person. Hang in there.

Hopeful

[AlaskaAngel]

I think is mostly a question of how much risk you are willing to handle.

Dianaq, I feel we have a good deal in common. 1.6 cm IDC, high-grade, some DCIS, clear lymph nodes, no LVI, HER2+++, ER+, PR+. I don't have any info on other characteristics of my tumor so far. I'm NED after CAF x 6, rads, and 1 3/4 years on tamoxifen.

When I was diagnosed in 2002 at age 51 I knew nothing about clinical trials or about the Herceptin trials that had already been started. I told my onc I was interested in participating in clinical trials. I should have realized how limited his help would be when he only replied that "there are thousands of clinical trials". If he didn't have the foresight at that time to consider off-label Herceptin to be a reasonable choice for me to consider, at the very least he could have said "You can look at various clinical trials at clinicaltrials.gov"; but that would have taken more thoughtfulness on his part.

At diagnosis, following lumpectomy I asked my onc about the possible option of having rads plus having my ovaries removed and doing hormonal therapy. He did not provide any statistics on choices or any discussion and only said that it was not quite as good as chemo plus rads plus hormonal therapy. The guy was just not into a partnership relationship or teaching or being straightforward with me.

Chemotherapy takes a chunk of time to have and much longer to recover from, and speaking only for myself, my WBC still has never recovered and the struggle to lose weight and avoid gaining weight is now a much greater struggle for me. A part of my personality was wiped out, the part that is called libido. It doesn't just affect sex life; the loss is much, much broader than that.

At any rate, you have the advantage of Herceptin as an option at time of diagnosis that I did not have. In addition you have the potential advantage of either a SERM or an AI like I have had.

Unfortunately the wonders of chemotherapy have been far more thoroughly researched than more simple and less toxic therapies. I wish you the best with your decision.

AlaskaAngel

[Dianaq]

Alaska Angel,
Thank you for your feedback. I realize there have been more studies of chemo only with her2- cancer. As far as I can see it has not been of much help to her2+ cancer. I will make my decision on 9-11. Of all days! Unless my ong. has some really good studies I am feeling that I have to go with my gut. No chemo.
Thanks again

[astrid]

I am also triple positive with no node involvement. I am still scared because as I have said before, my sister was ER+ PR+ and had no node involvement and died 2 ½ years after diagnosis so it can travel into the blood stream. She was only 38 and her cancer was very aggressive and they did not have Herceptin at the time. I do not remember what grade her tumor was, but I assume it was grade 3. I am grade 3 also.



With my family history, young age (47) and tumor grade and size, two ONCs recommended Chemo. I entered a clinical trial for node negative women. This clinical trial compared AC and T as stand alone drugs. The standard treatment for node negative women with tumors greater than 1.5 CM (mine was 1.8 cm) is 4 rounds of AC followed by 4 rounds of Taxol administered every three weeks. Herceptin can be give at the same time as Taxol, but it can also be administered after chemo and radiation. Hercepetin should never be given with AC. AC and Herceptin are both extremely hard on your heart. Anyway, the arm of the clinical trial that I entered was Taxol as a standalone drug administered every 2 week for 6 rounds. I than had the usual 35 radiation treatments and then began and am still going through my year of Herceptin (started mid June) and I am on Tamoxifen.



I also was skeptical about chemo because of my sister, but the studies show that women treated with chemo have a much better success rate for DFS than women who do not take chemo. The positive results are NOT in the first five years. The rates of DFS double at 15 years. I want to be around for 15 more years so I was willing to take the chemo and maybe I was lucky with Taxol only, but I feel great and felt pretty good though out my chemo. I have NOT lost my libido and I was very worried about that. In fact now that I eat better and exercise better, I feel better than before my diagnosis and I love my 1 inch curly hair. It is sooo easy.

[AlaskaAngel]

I don't think this discussion has to be one that separates people into just 2 sides of a sensitive issue, black and white, and I hope that it isn't offensive to raise very real questions about who benefits and who doesn't from adding chemo.

I wish that none of us had to make these awful choices.

I don't want to lose sight of the information that tells us that trastuzumab is more effective when chemotherapy is added to it. That is a weapon we didn't have before, and should be used for those who are most likely to benefit from it.

But because both the AI's and Herceptin were not commonly available even just 5 years ago I have to ask whether statistics about 5 years ago or 15 years ago showing a success rate for DFS are meaningful for women with HER2 positive HR positive bc, particularly those who are 50 or over.

In addition, as I see it there is one other huge difference for those in this group who are currently diagnosed. They stand to have the choice of using even newer drugs, newer methods of individualized analysis of their particular disease characteristics, and newer and better ways of analyzing whether they remain NED.

To me those things are a really, really big deal.

AlaskaAngel

[Becky]

Maybe this is a chat room topic???????????? Let me know. I love the interesting ones that have more than just one opinion.


AA knows me well. (I miss you)

Hugs and kisses

Becky

[AlaskaAngel]

Hi Becky,



I think the chats are great for opening our heads to wider perspectives, especially since there is so much information out there that it is hard to see everything on our own. I've missed them but am grateful that they will continue. This topic is one that probably does need some experienced moderation, whether discussed on its own or as a subtopic of one of the broader ones suggested.

I'm still hoping we can get some Aussies online for some chats and hear more about how things are going with them... and VERY saddened to hear about our loss of the croc hunter and environmentalist.

AlaskaAngel