Anyone with tumors less than one centimeter?

Paris · 12-13-2008, 07:55 AM

Having read the latest research from this year's SABC about the high rate of recurrence for very small node negative HER2+ tumors I am thanking God I did herceptin but am wondering if there is any information regarding recurrence rates for patients who had tumors less than 1cm who DID chemo/herceptin. For those of you who haven't heard of the study it showed that for HER2+ tumors less than one cm. the rate of recurrence was 23% compared to er+ HER2- tumors which had a rate of 6%. None of the patients had received chemo or heceptin. Average patient age was 57.

It appears that researchers are just starting to study this small population of breast cancer patients. I have also seen it suggested that researchers don't know how effective herceptin is in this population.

So while I tend to be a very positive person and try to believe I've got this thing beat, reading this study made my heart sink. The study does not split out the patients who were strictly HER2+ (i.e. er-/pr-) nor does it show the recurrence rates for pre-menopausal women who tend to have more aggressive cancers. So my take on it is if you were post menopausal and triple positive the recurrence rate would be 23% without any adjuvant treatment but the rate would have to be higher for pre menopausal er-/pr-/her2+.

While I know I've done everything I could based on what therapy was available at my diagnosis two years ago I feel like I'm losing the grip on my security blanket.

I'm hoping some of you may be able to shed some light on this. Please prove me wrong on this!

Jackie07 · 12-13-2008, 01:47 PM

I think Jean (?) and several other members like Maryanne in Hawaii are the 'less than one mm' people you are looking for.

Mine was a little bigger and the recurrence (just one tumor, but wasn't cut clean and was misread as scar tissue for 4 years) was over 2 cm before they finally recognized it.

Just wanted to mention about the research done in England that 9 weeks of Herceptin has the effect similar to 98% of the one year treatment. I also had to stop Herceptin because of the heart problem. Just have to watch and check carefully.

Becky · 12-14-2008, 06:15 PM

First, the study is vague but I will make the following ASSUMPTION that these women had lumpectomy with radiation or masectomy only because tumors less than 1cm (in the past) usually didn't receive chemotherapy.

That said, chemo alone reduces the recurrence rate - I am not sure by how much but when the standard was 4AC followed by 4 taxol every 3 weeks and the study on dense dose (every 2 weeks instead) - that alone reduced recurrence rates by 38%.

So, if we want to be conservative, let's say chemo (regardless of the kind you had), reduces recurrence by 25% (I think its more and we won't take dense dosing into account). Then chemo reduces 23% to 17%. Now add Herceptin which reduces recurrence by half - now you are at 8.6%. That's pretty good and that doesn't take into account that depending on hormone status, exercise can reduce recurrence risk by 20% (hormone positive) to 44% (for hormone negative) so let's use 20% to be conservative and that's less than 7%. A good Meditterean diet and a couple of cups of green tea and you're good to go!

Keep the faith. Keep your face to the sunshine. Smile as much as you can. Be nice to everyone you meet.

RobinP · 12-14-2008, 07:48 PM

Study referenced:
http://her2support.org/vbulletin/showthread.php?t=37140

Yep, had only 4mm invasive her2+.

Just want to say that you have to read the data from the study that I posted in the SABC posting area (Breast Cancer Meeting Highlights) in light of the fact that RFS is a local relapse and the DRFS is a distant metastatic relapse spread . Now the local relapse was higher at about 23%. I doubt if it would be this high if you had a mastectomy or lumpectomy with good rads and surgical clearance. Now let's face it, a local relapse is not as bad as a distant one in many cases.

For the DRFS distant risk free survival, the relapse was only 12% in the first five years and went down to 7.5 % in years 5- 10. Now Becky is right that these stats may be decreased via chemo and herceptin. Just figuring Herceptin alone, that would be about 6% risk in the first five years and 3.5 in years 5-10 for a distant spread and if you make it beyond ten years, I bet the risk is even lower. Now remember the risk of death from just driving a car each year is about 2%. Go figure, your risks of a relapse of early stage her2+ bc is not much more and even if you do relapse, Herceptin and DM1 super Herceptin, Laptanib, Pertuzumab, Avastin are increasing survival of late stage her2+ bc all the time.

I hope this post makes you see things more optimistic.

PS This study would have been easier to draw conclusions if the T1a and b had been separated in conclusions, as well as hormonal status. We know from the HERA trial that hormonal negatives with her2 stats have a higher relapse compared to her2positives hormonal positive by about 50% for early stage in the first two years. Nobody really knows if this increase relapse rate for the her2+, er-,pr - tapers off after two years and beyond five years, but it seems likely, as we know from years of research that hormonal negatives relapse earlier than positives.

Ironically, the smaller tumors in the above study were hormonal negative while the larger ones were hormonal positive. I tend to think if her2 positive hormonal negatives relapse quicker than her2 positive hormonal positives, the hormonal negative rate of relapse would be less after five years, perhaps even less after the initial two years than hormonal positives. So, yes, having er+pr+her2+ mixed with er-,pr- her2+ may scew that data to look worse for the negatives in the second five years. All of this is conjecture and I wouldn't take it all in too seriously since the study was kind of crummy not dividing up the data clearer.

PS I think the real take home message from the SABC this year from what I have read so far is that there is a lot of research going on for her2 bc, and there are many new drug therapies with efficacy and many new ones on the near horizon that are very promising. due primarily to targeting therapies like Herceptin.

harrie · 12-14-2008, 11:13 PM

Hi Paris,
My tumor was 6mm by 5mm, IDCIS.
I had the Oncotype DX test done to see what my risk factor was and I also went to see Dr. Pegram for a consultation. He inputted my info into adjuvant.com and came up with a pretty good risk analysis. He said I had a 84% chance of being without recurrance based on my tumor and chemo would reduce that risk by 25% giving me a 5% added benefit. This put me into the 88% of nonrecurrance.
Then according to Becky, herceptin adds another 50% benefit which would make me another 6% benefit, putting me at 94% chance of not developing another recurrance.

But my situation may be not quite so easily predicted since I am BRCA2. THere are not many studies done on such small tumors let alone those that are BRCA positive.

RobinP · 12-15-2008, 06:21 AM

Harrie,

I think that the study we are speaking of above addresses specifically the relapse of her2+ bc. The last time I checked adjuvant online it did not include her2+ data to enter in the equation of relapse risk.
OLDER POST ON SAME SUBJECT of her2 relapse rates:http://her2support.org/vbulletin/showthread.php?t=25400

PS Did anyone read my post on green tea from SABC, as it does highlight how it helps her2bc. YES! Going for another cup now. BON APETITE.

Soccermom · 12-15-2008, 09:26 AM

"Even Small HER2-Positive Tumors May Require Aggressive Treatment

Patients may ask about a widely reported study suggesting that even some very
small breast tumors may require aggressive treatment after surgery. The findings
were presented Friday at the San Antonio Breast Cancer Symposium.

In the study, women with HER2-positive tumors measuring 1 cm or less had
recurrence rates nearly three times higher than women with similar-sized but
HER2-negative tumors.

According to the New York Times, HER2-positive tumors are sensitive to
trastuzumab, which is not usually given after surgery when tumors are small. The
current findings imply, the Times says, that trastuzumab could reduce recurrence
of even small tumors; however, that possibility was not examined in the
federally sponsored study."
reprinted from Journal Watch

Lien · 12-15-2008, 11:15 AM

My tumor was small; see signature. I didn't get Herceptin and had to ask for hormonal tx. Still, I'm almost 5 yr out from diagnosis and doing fine. Even though 23% risk of recurrence is high, one still has a chance of 77% that one will be fine.

Love

Jacqueline

Jackie07 · 12-15-2008, 11:35 AM

Green tea has been studied and proven there's anti-oxident in it. Just look at the huge Chinese population statistically, I often wondered if it has something to do with the custom of drinking green tea and taking Chinese herb medicine. (Chinese also knows a thing or two about genetics - it was deemed improper for people with the same family name to married each other.)

I remember the aroma of freshly made tea (boiling water poured into a china tea pot with the dried green tea leaves in it - then poured to the little china tea cup and then sip it.) It was the custom to serve a fresh pot of tea to the visitors. Many mountanous area had huge tea barrels provided by the locals for visitors to quench their thirst. I was never fond of drinking tea or coffee because my brain was too sensitive to it (the huge brain tumor increased my cranial pressure.) While preparing for the grueling college entrance exam, I could stay all night by drinking just a cup of green tea - probably negated the good benefit.

My Father drinks green tea all his life. He is 93 right now. And I don't remember him being sick too much. My Mother drinks a special Chinese herb tea that has dry chrysathemum in it. She is 85 and is a survivor of non-Hodgekins lymphoma.

duga35 · 12-15-2008, 12:18 PM

As you can see, my tumor was very small also, but after researching the data that its out there (which is very little for men), and talking with my onc, I decided to take the treatment. Maybe it was over kill, and I've had quite a few bad side effects from it, but I didn't want to have it come back and then kick myself for not taking the chemo/herceptin. At least now if it comes back I know that I did everything possible to prevent it.

Sheila · 12-15-2008, 12:30 PM

As you can see, my tumor was .07cm, node negative and that was back when Becky said chemo was not recommended for most.......I recurred a little over a year later.

MJo · 12-15-2008, 02:45 PM

My tumor was small, but I hit it with everything available. Glad I did.

Jean · 12-15-2008, 08:11 PM

Paris,
I truly and deeply understand your concern.
When I was dx. 05, small tumor 6MM after biopsey 3MM
left to be removed during lumpectomy. I was very upset to be told that the standard of treatment was lumpectomy, followed by radiaiton, and since I was er postiive....an AI...it was a long difficult battle. I did loads of research and there was very little if anything out there to arm myself with...just bits and pieces ...maybe this will help ease your mind.

When I saw Dr. Slamon he was 100% for all HER2 women to have hercpetin. That study you read is just not current. We are the new generation to learn from. Early stage Her2 women were not having Herceptin.
Especially those with small tumors. The dr. are just finding out now that size does not mean the tumor is not aggressive. Silly when you think about it! I thought of it in this way, a small bomb, a medium size bomb, a large bomb, heck they will all kill a person who has the bomb in their hand, right. Yet all the dr. I saw went by the standard protocol and would not advise chemo/herceptin. They were not researchers like Dr. Slamon...they were all great dr. in their own right, but would not go outside the box.
Well, back to Dr. Slamon, as he said to me I probably saved my life.

Remember the stats are not in yet for those of us who are early stagers who have received herceptin. I believe the future will show a big difference that the odds are changing and is now in our favor.

Paris, do not stress as I am certain we will be hearing great news with the numbers as now herceptin has been approved for all early stage women. Just think about it....the numbers have to raise. Prior to herceptin Her2 was pretty dismal.... the new treatment has changed all of that. We are making great strides against Her2 bc..I was so elated when the FDA approved the use of herceptin.

Paris, you have done everything possible, while that does not offer you a guarentee regarding recurrence or anything else for that matter in life. It is normal to have
some setbacks along the way, especially when reading that type of information. But also note that study is not an ideal trial study.

Sending you peaceful thoughts,
Jean

swimangel72 · 12-15-2008, 08:13 PM

My tumor was measured at .9cm after my mastectomy - with a note that it might be smaller and we should refer to the original size based on the biopsy. The biopsy never made note of the size of my tumor - only the size of the samples. The radiologist originally said my tumor looked to be about .7mm - she called it a "nodule". I didn't want radiation - and opted for a mastectomy - without benefit of knowing my Fish report results or the Oncotype Dx. After my mastectomy I found out that the Oncotype Dx score was 22. My onc told me I'd be fine with just Arimidex for 5 years. A week later he realized that my Her2 status was "equivacal" and my breast surgeon never received the Fish report. When the Fish report was faxed, my onc had a shocked look on his face and said that this changed everything.....I was Her2++++ and would need chemo and Herceptin. This was a huge blow to me..........I had been reassured by my breast surgeon that getting a mastectomy would reduce my risk of recurrence to nearly 0%. Also my onc had first led me to believe that a Oncotype Dx score of 22 was "low"............a week later he said it really was "low intermediate" and that being Her2++++ made it more aggressive which made him want to treat it more aggressively. However, he never put me on the standard treatments - instead he put me on Navelbine for 4 months with Herceptin and now I'm on Herceptin for the remainder of the year. So I never lost my hair or had to worry too much about heart problems - but I do worry that this treatment was unorthodox. Even though two other oncologists told me this treatment was fine - that oncology was also an art, not just a science.........I can't help but be nervous about a recurrence. Still - considering how small my tumor was - and that I did get a mastectomy I'm not TOO anxious about a recurrence, except when I read reports like the one above. So it gives me some peace-of-mind that I had the mastectomy, even though I ended up with MRSA after the free-tram.

Actually - I worry equally about getting a different kind of cancer later on in life. My dad died from astrocytoma (a brain cancer)..........and even though I feel lucky that we caught my BC early, who the heck knows what else could happen? Then again - I could fall into the 2% category of the people who die in car accidents.........so I refuse to waste too much time worrying about cancer. I'm more worried about getting MRSA again when I get my abdominal hernia repair surgery next summer!

suzan w · 12-15-2008, 08:46 PM

I am also in the "small tumor" club. You can see in my signature my journey so far!!! I'm with you, Swim Angel, I also got MRSA after my appendectomy last June!!!

harrie · 12-15-2008, 11:50 PM

Robin, when we consulted with Dr. Pegram, he gave me two printouts called Shared Decision Making from Adjuvant.com. He told me one included the HER2/neu and the other did not.

Lien · 12-16-2008, 12:24 AM

For those who had an infection right after their BC surgery: my oncologist told me that having a big infection can "mop up" residual cancer cells, that might otherwise have spread.

You'll probably be fine!

Jacqueline

sarah · 12-16-2008, 03:41 AM

I think today, anyone would get everything if only because of the HER+ factor.
In the dark ages--1999, I was told I could chose a lumptectomy or a mastectomy. I chose the later feeling that was a surer idea and I was about to move to France so this was daignosis was all a big shock and really bad timing - isn't it always!. I had read about Herceptin and kept asking about it but every doctor said not for you because you just have DCIS. they also said I was cured and that with the mastectomy nothing else was needed.
I moved to France and 3 years later noticed a lump in the breast that was removed, it was taken out and i was told it wasn't cancer, however another lump came in the same spot 2 years later and so everyone was sure it wouldn't be cancer. nothing showed up as suspicious on mammograms or sonograms but I asked for it to be removed - it was cancerous and my cancer was now outside the breast. Then after several surgeries, I had chemo and herceptin (still on Herceptin) and radiation and then started on Femara (still on it). Even when they knew from the biopsy where my cancer was, they couldn't see it on a mammo or sonogram and an MRI showed inflammation but still didn't look like cancer!!! Consequently, I'm more confident about Herceptin and Femara than I am about tests but everyone agrees I'm an odd case.
Reading one of the SABC reports it sounds like newbies should get Zometa with the chemo for better protection as well of course as Herceptin.
Every year brings more hope to all of us. We're lucky that it's such a well researched and profitable disease so better drugs keep coming out.
hugs and love
sarah

Lien · 12-16-2008, 03:55 AM

Be careful with Zometa. It can cause necrosis of the jaw. A serious condition. Until they figured out a way to either treat or prevent the necrosis, think twice before you start taking it. I've heard some worrying stories. As I have jaw problems already, I'm not taking any chances.

Jacqueline

Paris · 12-16-2008, 07:41 AM

Thanks for your kind replies ladies. I often find when I read these studies that I have more questions than I did before reading. It would have been much more imformative if the researchers had split out all the different populations of the study like age and er status. It just leaves me wondering what the numbers were for pre-menopausal hormone negative people were. I do feel fortunate that I got many opinions as there were those doctors that felt that chemo/herceptin was like an insurance policy since at that time they felt I had only a 10% chance of recurring if I did no adjuvant therapy. Obviously now that this study came out that 10% is not accurate. Maybe I am splitting hairs but I have had so many things happen cancer wise that shouldn't have happened due to my "good stats" that it shakes my confidence to a degree. Yes, I do keep myself busy, take care of myself and enjoy life. I just wish I could shut off that little voice in my head!