TCH: X4 vs. X6 ???

[DianneS]

I am node negative but had a grade 3, 2.1 cm tumor so I am scheduled to have 6 TC sessions and I think 11? Herceptin treatments along with the TC.

Reading what some of you who have taken TCH it sounds like it's going to be tough. I had a reaction to the first treatment of Taxotere last Thurs - tight chest, flushed face, swelling of face, and got 50mg Benadryl which helped right away. I had taken the Dexamethazone the day before and morning of treatment. But no one told me to take a Benadryl tab that night and I was pretty puffy in my face.

I'm wondering if the TCH is really that much easier on the body, compared to the AC treatment?

Also, my first onc said having a grade 3 tumor was equal to having 3 positive nodes. Another highly regarded breast cancer specialist onc said 'not necessarily'. So who is right? I was so happy about having no positive nodes.

Diannes

[Lien]

Hi DianneS,

I don't know about chemo, because I didn't have any. I do think your onc is being overly symplistic. As far as I know, Grade 3 means that the cells are very different from normal cells. This may mean that they are more likely to spread, but I'm not sure about that. Your onc could be right.

The fact that there is no cancer in the nodes, means that it hasn't spread yet. I've heard about much smaller tumors that had spread, so apparently, yours isn't a really fast spreader.

Do you know if there was any lymph- or vascular invastion? This means that cancer cells got into the vascular or lymphatic system within the breast. That could point to an ability to spread.

You are getting chemo to kill those stray cells, if they have escaped already. So you are taking care of that. Being Her2 positive used to be viewed as prognostically worse, but with Herceptin I think that's no longer the case. With your path report and this treatment you have an excellent chance of not ever seeing your cancer return.

I wish doctors would realize what impact their words can have on a patients' state of mind. They should ask themselves what they want to achieve by saying these things.

Please go back to being happy about your nodal status. I had grade 3 and clean nodes, almost 5 years ago now. I'm NED.

[Lien]

I meant to write: lymph- or vascular invasion.

Jacqueline

[DianneS]

Hi Lien,

The path report said no vascular invasion and all my lymphs were negative (8 taken in total). Supposedly there is no cancer but it's that one stray cell that could cause problems.

I'm happy to know that you didn't need chemo! Lucky is something I am not.

What was the size of your tumor? And I assume you are her2 positive?

I think, from reading lots of posts that this whole thing is a crap shoot. Some people with small tumors get a recurrence and others with larger ones don't. Or the reverse can be true. I know Herceptin is supposed to make a difference but there is so much that they don't know about it. I was just reading on a post here somewhere how Herceptin can cause some women to go from her2 + to her2 -. Not knowing my prognosis after 10 years (or even 5) is stressful and makes it hard to keep positive, for me at least. Having just coped with a life threatening illness (brain aneurysm) 2 years ago I'm drained emotionally and ticked off that I have to deal with yet MORE. I can't even find anyone who is 10 years her2 pos and doing well! How can I be positive knowing that?

It's enough to have to face chemo, but to go through it with absolutely no guarantees that you'll come out the other end in better shape is enough to make me consider doing nothing. That's where I'm at now.

Diannes

[Lien]

Hi Dianne,

It's quite normal to feel this way soon after diagnosis. Especially when you've had to deal with a prior heath disaster (or near disatster). I know; I'd been in a car crash a few years prior to my diagnosis. But believe me, it gets easier with every year that passes. Now you have to get through treatment first. Your path report sounds very encouraging to me. The chemo will quite likely take care of any stray cancer cells.

In the Netherlands, where I live, 80% of breastcancer patients survive at least 5 years. That's including those with advanced disease. I think you have every chance to live a long, healthy life after this. If you would like to know the odds of surviving this, you can ask your doctor to run your path report data through Adjuvant! an online prognostic tool. Or if s/he doesn't want to do that, give me a shout and I'll do it for you. My doc gave me his password a few years ago.

About Luck: I have no idea what that is. People who hear my life story are amazed that I am still here. There's been a lot of bad luck in my family. I've learnt the hard way to be happy regardless. It's not easy. But as far as we know we have only one life, and it's up to us to make the best of it. I've been depressed and scared and angry and frustrated. But I'm at a better place now, that I'm almost 5 years out from diagnosis. Believe me, those feelings you are dealing with right now will pass.

If you feel your doctor isn't supportive or if you feel s/he isn't giving you the right info, go for a second opinion. Or a third, if you have to. Find the doctor who will work with you in this batte against cancer. Would you hire a plumber who doesn't seem to be right for the job? I bet you wouldn't. So why not shop around for a good doctor?

As for not finding any women with Her2+ disease who survived 10 years: they don't need the online resources. They have moved on. They probably think about breastcancer every now and then, but less with every year that passes. They have other things to occupy their minds. I personally know quite a few. I even know a few women who have survived Stage IV disease and have been NED (no evidence of disease) for over ten years.

It's a crap shoot, but your odds are quite good! Hang onto that, get through the chemo and come to this site everytime you need to vent, chat, cry for help, or just plain cry.

You can do it!

Hugs

Jacqueline

PS. My cancer info is in my signature below:

[DianneS]

Lien,

I'm sorry you've had to go through so much! Life just is not fair, for sure. I forgot to mention that I had both ovaries removed just 9 months ago for a benign cyst. Three surgeries in two years is a bit much. Also, my mom died 8 weeks after I had the brain surgery which was a double wallop.

I hear what you're saying about survivors. I know they are out there and I think it would be terrific if some of them would communicate with people who are just starting out on this journey. This is a scary breast cancer and sometimes just hearing from women who have come out the other end of this ordeal intact can be so heartening.

The first onc gave me about 70% because he hadn't figured in Herceptin. They use Adjuvant also but I guess it helps if they know HOW to use it!
My current oncologist - the second one I spoke to, gave me 80% of no recurrence in 10 years. She's a fantastic woman (google Karen Gelmon in Vancouver, British Columbia, Canada). She writes the protocols that other oncs use here & has co-authored quite a few books about breast cancer. She is quite ticked that the onc - or the oncs chemo nurse who administered the treatment screwed up so she is admitting me to hosp so she can do it herself.

It seems to me, and I won't name names here, that there are several women on this forum who had negative nodes and unfortunately had a recurrence anyway. If the researchers don't quite know what triggers her2 how can they cure us?

Also, I know that Herceptin works 'in about 50% of cases'. How do I know if it is working?

As you see, I am a sceptic! I like to know facts and her2 is still such an unknown.

If you don't mind my asking - how did you feel generally in between treatments? Just wondering what the TCH will do to me. Did you have treatments every 3 weeks?

Diannes

[DianneS]

Lien,

Oh, forgot to ask -

How did you do on Herceptin? Any heart issues during or after?

What is the Netherlands doing regarding breast cancer? Those are great percentages for 5 years after being dx with this stuff. Is that all breast ca including her2 pos?

Diannes

[Lien]

Hugs

Jacqueline

[Lien]

Something went wrong there. I typed out a whole post and only the Hugs showed up! Now ofcourse, that's the most important part, but still... ;-))

I didn't get Herceptin or chemo. I'm on Zoladex, to put my ovaries to sleep, and Arimidex.

Like I said, people on this forum are the ones who don't do well, mostly. They post here because they continue to fight cancer. It's part of their lives. If you go to the BreastCancer Discussion List http://bclist.petebevin.com/ and look at the archives, you will see that many, many there do well. They have become friends over time and stay on, even though they haven't recurred for years and years.

The Dutch statistics include Her2 positive BC.

Perhaps you are seeing things less positively because you have been through so many scares recently. Would you consider counselling to help you get through this? I know it helped me a lot. It made me see things in a different, more positive light. Which made it easier to deal with things. For me the hardest part was after I finished radiation tx. I felt like I wasn't doing anything to keep the cancer at bay. So I went back to my doc. and asked about hormonal therapy. They said I probably wouldn't need it, but that I could have it if I wanted to. So I decided to do it and feel much better about my future. Just being able to take action made me feel like I was more in control of what was happening to me.

You beat all the previous health issues; you can beat this one too!

Hugs

Jacqueline