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

Hindsfeet

Alaska Angel, I love your thought process, and balance. I am learning a lot from you.

BTW...I am seeing an oncologist on Friday. Would you have any studies that I could have in hand regarding chemo and hercepin studies, or where hercepin is used without chemo?

BlairK

My wife will have the MUGA scan tomorrow and the other scans next Monday.  She already had the blood cancer market tests.  I saw a book written by Elizabeth Edwards which partially is devoted to her breast cancer.  Sounds like she had chemo first, then surgery and then radiation.  She did not write enough details about the breast cancer itself but wrote a lot about the treatments, hospitals and doctors.  I also saw a book called Promise Me which is about Susan B Komen's sister Nancy who was the one who founded the Susan Komen foundation.

Anonymous

Here is a link to the metronomic chemotherapy. http://www.cancer.gov/aboutnci/ncicancerbulletin/archive/2006/062706/page4. Sounds like they are doing some studies.



Blair, my onc gave me the name of a book that he says is excellent, but I cant remember it. He's in India for a couple weeks but I will get it to you. I also have a couple of good ones as related to diet while going through chemo, etc. I'll post those tomorrow. It is off to sleep now. I've never been able to figure out what type that elizabeth edwards actually had.

Omaz

I would recommend 'The Emperor of All Maladies' - excellent book.

SpecialK

AA - I think you would have to quantify that tumor burden for the metastatic patient.  I am considered early stage with a 2cm tumor that was Her2+, but could be considered metastatic with a smaller tumor in a distant location, correct?  I don't think you can automatically assume a greater tumor burden just due to a metastatic designation.

AlaskaAngel

evebarry,

The only studies I know of are the 6 or 7 (?) studies that I listed in the discussion on "page" 15 of thread "When Do Most Recurrences for HER2 Happen?" under HER2/neu positive breast cancer forum:

http://community.breastcancer.org/forum/80/topic/763061?page=15

These studies are in the works but not completed, with the exception of the very first one I listed there. I tried to list the NCT # for each one (I think.... hope...).

Sorry I took so long to respond - for me I do think chemobrain is one of the SE's - I could not recall in which thread I had posted about the trials.

Best wishes for your discussion Friday.  I do think it makes a real difference to be well-informed and experienced based on past experience with the medical system and with treatment in general.

A.A.

orange1

Eve,

The only evidence I know of regarding the relative value of Herceptin given alone is from the HERA trial.  Patients who were given chemo + herceptin at the same time did better than patients who were given herceptin after chemo.  Its not exactly what you are looking for, but I think its the best you are going to find.

Good Luck. 

AlaskaAngel

SpecialK,

I've been unsure how to interpret your question, although it is probably perfectly clear to others. For the nonmetastatic, surgery would remove the known tumor burden, right? But for metastatic that is usually not the case. If I am not understanding what you mean, I apologize.

A.A.

SpecialK

AA - no apology - I was confusing!  I think it is a toss-up.  Some stage IV still have their primary tumor removed, then manage their distant mets, and sometimes remove those surgically as well if they are liver/lung.  I was thinking also of comparative tumor sizes (shouldn't have used my own stats - you are correct my chemo was adjuvent) and also of the more recent use of neoadjuvent chemo for Her2+.  I am probably muddying (is that a word?) the water so maybe we should just disregard my question!

BlairK

My wife had her MUGA scan with ejection fraction "in the 70s".  Other scans on Monday.  I will be in Hong Kong (and probably Singapore and China) returning on Dec. 17th.  Consultation with Penn is on December 12th and first chemo/herceptin treatment is Dec. 20th.

BlairK

I have just arrived back in Hong Kong.  I am reading Promise Me by Nancy Brinker who is Susan G Komen's sister.  A very interesting and compelling book.  The guy who sat next to me on the plane - his wife has breast cancer.  Sounds like she has not had any recurrence 7 years post chemo (she was diagnosed at 34 and is now 41).  She was HER2 negative and ER positive and Stage II.  Maybe another omen from above like sitting next to a pathologist on the train last week.

Anonymous

Blair-out of curiosity, do you have to start chemo five days before Christmas, or maybe that is not a big issue for you? I was just thinking I would rather have a really nice holiday feeling good, etc and then start a couple days after that.

BlairK

Dear fluffqueen01 - By December 20th, it will already be 9 plus weeks since surgery.  There seems to be some feeling that delaying any more than that is not good.  Today Monday US time, my wife will have her full body scans.  I am expecting that those scans will be normal especially since my wife is node negative and no evidence of lymph-vascular invasion.  I think I will go read the thread that talks about "when do recurrences occur?".  I am very optimistic that the chemo and herceptin and arimidex will reduce my wife's recurrence risk to a very low number like 2 or 3 percent.  What is the view of anybody reading this thread?

Anonymous

My breast surgeon says less than 7% (she said more like one percent given my treatments) for a bc recurrence. My onc uses the "cure" word which sends me running for salt to throw over my shoulder and wood to knock on. That is too scary for me.



After all the reading I have done on this thread and the her2 support.org one, I know a lot of women who had had the exact same treatment for the exact same diagnosis end up with mets to distance organs and are stage iv. Its just scary.



I think the last I read is that is you go two years, then recurrence percentage takes a big dip. After 5, another big dip. I am not sure they are positive after that. As a triple positive, I will always have to be vigilant due to the hormonal impact.

Anonymous

And as beesie once posted on another site.....you're 0% if you dont't have a recurrence and 100% if you do. All the statistics do if provide some confidence that we dont have to worry rvry day. But at the end....some of us are going to have a recurrence and some wont and we might all have the same statistical results.

BlairK

Just an update on my wife and I hope everybody will read this and send back their comments.  My wife had her various scans on Monday.  The results were sent to her OB-GYN by mistake instead of the first oncologist.  The scan of the liver shows a "very tiny spot".  I do not know what this means yet.  Given that I am Hong Kong, these things always seem to happen when I travel.  Given my wife's double mastectomy was on October 14th and the IDC HER2 positive was only 3.5 mm, is it anywhere conceivable that something could metastisize so quickly.  In terms of reading all the bulletin board threads and research and internet, I have never heard of a mets happening so quickly.  My wife was told "it is probably nothing" but since this started I have heard that said before and it always turns out to date unfortunately that it is something.  Does anybody have any comments.  I am trying really hard to focus on my work.  My wife's chemo and herceptin start December 20th, and pre-med visit December 13th and U. Penn visit December 12th.  I would be really interested to hear from everybody about this and I will update after I get more information.

Omaz

Hi BlairK - Check out the post by Judy67 near the end of

http://community.breastcancer.org/forum/69/topic/778800?page=11#idx_330
 

Beesie

Blair, this is not to scare you but just to answer your questions.

Some women are diagnosed as being Stage IV right from the start.  Until the scans are done, the staging is incomplete - the "M" in the TNM staging is noted as being M0 (the zero representing "unknown").  Your wife didn't have any previous scans, did she? 

The timing of your wife's surgery and even the timing of when her breast cancer was first developed really isn't a factor - the cancer itself may have been in her breast for quite some time before it was discovered. It's said that most cancer is present for many years before it becomes large enough to be found. So some invasive cells may have broken out quite some time ago. Additionally, the fact that your wife had only 3.5mm of invasive cancer is also not really a factor - certainly with a smaller tumor her risk of mets is lower but any amount of invasive cancer puts us at risk of mets.  The more important factor may be the aggressiveness of the cancer.

When someone is diagnosed and all the scans come back clear, then if mets were to develop, usually it will be a period of time before the cancer develops to a point where it is large enough to be visible on the scans. In actual fact the cancer has been there all along (the cancer cells had to have moved out of the breast prior to the surgery that removed the cancer from the breast) but it could be that there were only a few cells, and that would be impossible to see on any type of scan.  That's why there usually is a lag - often years - before mets is discovered.   

Having said all that, it's true that this is probably nothing. I don't know much about this but I know that there have been other women on the board who've had this scare and it's turned out to be nothing.  Maybe just a benign lesion, or possibly a cyst. 

My thoughts are with you and your wife.  I know that all the "probably nothings" so far have turned out to be something so the way I see it, your wife is due to finally get some good news! 

BlairK

Dear Omaz - Thanks for the information.  I will read it.  BlairK

BlairK

Dear Beesie - Thank you for the detailed information.  I do not know the exact type of scan my wife had.  I did write to the first oncologist and my Dana Farber contact about it but have not heard back yet.  In any event, it is "a very tiny spot".  I do not know how they will determine what it means.  The chemo and herceptin will start on December 20th and if the tiny spot turns out to be something bad I would hope the treatment will have some good impact on it.  But the bottom line is that I have to wait until we get more information.  I hope our luck will be good this time.

BlairK

Dear Beesie - These are the first scans my wife has had other than the MRI on her "good breast" prior to the BMX.

BlairK

I got an e-mail from the Dana Farber oncologist already and she believes on the basis of the information (she is fully up-to-speed on my wife) that such a finding is highly likely to be benign and it is extremely common.  A mets would take much longer to occur.  I hope she is right.  The first oncologist also answered and said he was going to get the scans and the scan report.  At least that can assuage some of the anxiety.

3girls

BlairK  I think this is why Dr's don't routinely scan people with early stage breast CA without symptoms because of the false positives.  I had a bone scan for hip pain and they saw something on my skull.  Had a head CT probably nothing and will follow in another year.  Nerve wracking but I am praying your wife will be fine.  Have the done any blood tests ie: liver enzymes?  Good Luck with everything!

suzieq60

Blair - I had a cyst showing on my liver when I had my CT scan - try not to worry.

((((HUGS))))

Sue

Anonymous

Blair...my onc won't do scans for early stagers unless there are symptoms. He says little things show up that are nothing,but then they have to do more testing to find out it is nothing. He said my treatment would be the same if they caught it before symptoms or when they start.

With that information, I still wasn't convinced, so I had a kidney stone that required an xray and an upcoming gyn appointment in which I wanted to discuss his thoughts on whether I should have a hysterectomy. I convinced my primary physician to order a ct scan so I only had to have one xray for everything.

Nothing showed except a small cyst in my kidney, which my urologist says is pretty normal.

But, I now understand why the onc doesn't do the scans. I will worry about that cyst now too!

I hope all is ok with your wife.

exbrnxgrl

Blair,

I don't want to scare you but Beesie's post makes sense in light of my particular situation. After my 9/7/11 bmx my path report put me at stage IIB grade 1. On Octobet 26 a PET scan picked up something on my hip. I was assured it was probably nothing by 2 oncologists and the interventional radiologist who did the biopsy. They were wrong as it turned out to be a 2 cm met. I don't believe this met developed since my diagnosis this summer but was a result of some cells that broke away at an earlier point in time. I am fortunate in that I have a smallish single met to the bone and it will just have to be managed as a chronic condition. Treatment will never end for me but as long as it keeps me alive I won't complain. I hope and pray your wife's spot is nothing.

Caryn

BlairK

Thank you for your posts.  This is scary.  I need to wait for updates from the oncologists about my wife.

BlairK

I am reading another thread about Taxotere.  Sounds really scary.  So on my thread here, any more comments on the proposed treatment plan of Taxotere, Cytoxan and Herceptin every three weeks x 4 and then Herceptin every three weeks up to one year and then arimidex one pill a day for 5 years.  My wife's visit to Penn on Monday December 12th is confirmed and I prepared a list of questions which I will post in a little while for your comments.

BlairK

Here are the questions that I have asked my wife to ask during her visit to Penn on Monday December 12th.  If you send me your comments or suggestions I will pass them on to my wife. 

Summary - 3.5 mm invasive ductal carcinoma (IDC) which is HER2 positive and ER positive and node negative.  Leaning toward treatment plan of first oncologist of taxotere x cytoxan x herceptin 4 treatments every three weeks followed by Herceptin every three weeks for a year plus Arimidex every day for 5 years.  Current view is reducing the risk of a recurrence is more important than dealing with the side effect risks which can be managed.

1. What is your view of recurrence rates of a T1a node negative HER2 positive (and ER positive) tumor?  Published articles range from 5 to 10 percent to 20 to 25 percent.  Retrospective study by MD Anderson hospital says 23 percent.  There are also stories of patients with 2 mm tumors who had recurrences and died.

2. What is your view on the treatment plan.  Taxotere - Cytoxan - Herceptin plus Arimidex.  I have read about Taxol plus Herceptin weekly for 12 weeks in trial at Dana Farber.

3. How much reduction in the risk of recurrence will there be from treatment with Herceptin (plus chemo).  Published articles and discussions among oncologists are saying anywhere from 50 percent to 80 percent.  We have been told that after treatment the risk of a recurrence would be under 5 percent - maybe 2 to 3 percent.

4. Tell him about the "tiny spot" on the scan of the liver.

5. What is Penn's view of the pathology compared to Princeton and Robert Wood Johnson.

6. Is there any significance to the statement by Robert Wood Johnson of 3.5 mm is "isolated nests of cells" (versus a single sheet of cells).  I spoke with a breast pathologist and he said it is not significant.

7. The bottom line for us (or at least for BlairK) is that reducing the risk of recurrence more important than the risks of the side effects.  Side effects won't kill you, a cancer recurrence can.

8. Do you have any other advice or opinions on BlairK's wife's situation.

suzieq60

Sounds all good to me

Taxotere was horrible, but doable. Never went totally bald, in fact hair grew while undergoing treatment - there just wasn't much of it. Taxol seems to be a lot less harsh - she could ask about having that instead.

One thing I noticed, was that on day 3 after a treatment, I got terrible leg pain - fixed with Digesic (pain killer) and a 24hr Claratin. I would start taking these meds before the pain was due and didn't suffer as badly as the 1st tx. Also got a grumbly tummy - fixed with Somac to settle the stomach.

I was told 23% recurrence which would be halved with chemo/herceptin but that was for 11mm. The Arimidex will also reduce the numbers and the final figure above is about right.

Your list is great Blair - hope the appt goes well. You are SO right, the risks of the chemo are minor compared to the risk of mets.

Sue