Chemo: what to expect?

[DianneS]

Hi,

There are so many threads here, not sure if anyone will answer but here I go anyway!

I was just dx August 27, 08 with invasive ductal carcinoma of the right breast. I had biopsies since both breasts had suspicious masses. Only the right breast came back with the carcinoma. I decided, since I have troublesome lumpy breasts, to have a double mastectomy on Sept. 9, so am healing from that.

I had a 2 cm tumor, grade 3, in the right breast. No evidence of vascular invasion. The pathology report also said all eight lymph nodes removed were negative. Guess that is good news?

I am her2 positive 3+++, weakly ER positive, not sure about PR status. They have me as Stage 1. My weird oncologist, who loves to get me in a real bummer mood, after I told him I had negative nodes, said 'having a grade 3 tumor is equivalent to having 3 positive nodes'. Well, thanks doc! Is he right?

The oncologist also said since he doesn't have a crystal ball he doesn't know if there's a tiny cancer cell somewhere in my body or not, so he is recommending 4 rounds of chemo every 3 weeks, then another 4 rounds every 3 weeks of another drug, then about a year of Herceptin. He said my chances of no cancer recurrences in 10 years are 78% with treatment; 64.9% no recurrence in 10 years if I have NO chemo. Is the additional 13% worth it? I kind of wish he hadn't put numbers into my head.

I am 55 years old and otherwise feel great. I am active, and really wondering if I want to proceed with chemo. I read so many stories of neuropathy from chemo, or leukemia....I am scared to take a step in either direction.

How do the doctors know Herceptin works? If they can't find cancer in me now, how will they know the chemo got anything?

Also I was getting ultrasounds every year. One year I was clear and the next a tumor. Another woman I talked to who is her2 positive was having mammograms and they didn't find a 2 cm tumor in her breast until they did an ultrasound!

Thanks, ladies, and hope to hear from one of you,
DianneS

[Alice]

Hi,
I don't know if I have too much info for you but I just want you to know that we have all felt what you are feeling now.
There is strong evidence that herceptin works well in her2+ casses. If you feel put off by your onc you may want to get a second opinion. Even if the second opinion is the same as the first, you may feel more of a connection with a different doctor.
I know all of these decisions are difficult and them throwing numbers at you doesn't help. I hope more respond to your post that maybe can help you better than I.
Herceptin seems to be the mirical that us her2+ patients have been hoping for. It is very tollerable and well worth the benefits. As far as the being grade 3 being equal to having pos nodes, I think that herceptin has put us back to 0. My tumor was also grade 3 and I never heard that from my onc.
Alice

[Jackie07]

DianneS,

When a tumor is classified as Grade III, it is very aggresive - growing super fast (think about the cells growing exponentially from 1, 2, 4, 16, 256, 256x256....) Once the tumor grows to a certain size, some of the cells start to peel away and 'invade' the surrounding tissues, possibly enter the lymph system...

With mastectomy, you are pretty safe as far as the breasts are concerned, but only a systemic approach (chemo and Herceptin - miracle drug for Her-2 positive breast cancer) can give you protection against having cancer sprouting in other parts of your body.

My tumor was not cut completely, so I had 'local' recurrence. The cancer had spread to my underarm lymphnodes, so it was considered 'regional'. Thus I had local regional recurrence. Because it was a chunk of tumor left to grow, chemo was not able to kill all the cancer cells.

And because it was mistaken as scar tissue, my recurrence was not found until it was quite big and with two lymph nodes involvement.

I wished my surgeon would had taken the more aggressive apprach and let me have the double mastectomy the first time around. I think your doctor (and most doctors now) understands the aggressiveness of HER-2 +++ breast cancer. It is doable. Many of us on this board have had chemo + Herceptin. Just like my heart condition was caught before I even had symptoms, I am sure all the side effects you are worried about will be detected before there's any visible damage.

If your doctor thinks you are in good enough shape to have the treatment, I (personally) think you should heed their advice and give it a try.

[Jean]

Hi Diane,
Welcome to our very special site and I am sorry that you have been dx with bc....and yes we all understand your feelings and concerns.

What Jackie has mentioned about the size of your tumor and grade is all true. While we certainly do not want to put drugs into our bodies you must consider all your options to fight this disease.

Also stats are great when they are in your favor!

You did not mention the type of chemo your dr. wants to treat with...it sounds like A/C and taxol herceptin.

First of all let me share this....my tumor was grade 1,
small tumor...6MM - at the time of my dx. I was told no chemo/herceptin since the SIZE of my tumor was so tiny. When you think about considering treatment based on size - doesn't it sound silly? The cells in my tiny tumor were very aggressive...so does it sound wise to base your treatment decisions based on size... how about the character of your tumor. I had to fight hard to get treatment of herceptin off label since it had not be approved by our FDA at the time, unless you were a stage IV and your cancer had spread....very upsetting to digest this information. Yes, we do KNOW that herceptin works, for some it doesn't but there are other meds to work with if that should be your case.
But we do know thorugh the studies that herceptin is saving lives.

Now, if you are concerned about A/C chemo you could ask your dr. about TCH treatment which is showing through data to be just as effective without the risk of heart damage and the worry of leukemia.

But I doubt he will want to use TCH since you are weakly ER and maybe (we don't know) your PR status maybe negative also. If you were strongly ER positive that would change the treatment. I believe your dr. is concerned and treating with A/C and taxol for the best results for your treatment.

You were aggresive with your surgery by removing both breast. You must have the herceptin without a doubt,
of course I am of the mind that the chemo is also
important at this time. Years ago onc. would treat based on node status, that has changed also. We now know that cells can travel through the blood system without showing the node invasion. Your tumor was a good size....I had asked my dr. how many cells in a tumor of 6MM (my size) his answer was MILLIONS...
that was enough for me. Diane consider this...your lympth node is much like a catch basket in the kitchen sink...now consider a small tiny tomato seed that can easily pass through the basket and not be detected.

The odds are there with millions of cells that can get out into our systems. Her2 likes to travel...

Hopefully our future will be when we do not need these strong chemo drugs and we can use drugs like herceptin which only goes after HER2 and does not destory our good cells.

I am sure many other sisters will respond to your post and offer some information to help you thorugh your decision for treatment.

Please know we are all here to answer any questions and you are not alone...we are here to support you.

Wishing you all the best.
Jean

[DonnaD]

Dianne,
Welcome to our home. I hope you to will join our family. We are here for you, with knowledge, support and understanding.

Jackie07 and Jean have already given you great info. I am sure more will also respond . I did not use stats in making my decision. I wanted to be as aggressive as possible so I could to beat this disease. Chemo was a scary thought for all of us. But you can get thought it, and we are here to help!

Herceptin is our miracle drug. Many on this site who were not able to get it when they were first diagnosed are convinced they would not have had a reoccurrence if they had Herceptin. I am so thankful it was available to me.

Have you ever thought of getting a second opinion? If you go ahead with treatment you are going to be seeing your onc for 15 months and then years after that. Being up on the latest treatment and trials is very important but..... You need someone you feel comfortable with, who will encourage you, be supportive and answer your questions and phone calls. It is so much easier if it is a good fit.

If you have a chance pull up the post "All those Dancing with NED." NED means no evidence of disease. Their posts should offer you much hope. Be sure and read their signatures, so you can see the treatment they rec'd.

Decisions on treatments are very hard, especially at first when you are new to this disease and learning daily. But there are many around to help. Just ask your sisters.

Keep us informed.
Donna

[Jean]

Diane,
you asked what to expect....

1. yes, you will feel like you have a flu...achy etc.
tired... those type of reactions. But know your dr. will give you meds to stop the nausea. Many of us worked while on Chemo...while others could not...we are all different in our reactions to chemo.
But for the most part the meds that are given help greatly.

2. You will lose your hair. Of course it will grow back.
For me that was not a dramatic event...I was more concerned with staying cancer free and if having to lose my hair ...I really did not care.

I did not have Taxol but other taxane called taxatore, which is another drug in the taxane family. This work well with herceptin. I am sure others on the site will give you details on Taxol. I did have a small amount of
neuropathy in my toes...after 6 months it become less,
and after a full year there was still some left over numbness...but slight. There are meds to help with this and Vit. B6 is a great supplement.

I think it is wise of you to get all the information you can gather before making decisions. This will empower to make the best decsion for you...just make your decsion based on knowledge and NOT FEAR....

All best wishes to you,
Kind Regards
jean

[Colleens_Husband]

Diane:

Welcome to the forums. I am glad you found us and I am sad that you ever had to learn about HER2 cancer. Please understand that my wife is the one who endured the chemo, and I just observed, so my answers to your question may be a little odd to others here. But it is a different perspective and getting as many different ways of looking at a problem may be helpful.

Is the chemo worth it? Absolutely. You are playing math games when you make medical decisions. You need to increase your chances of survival every way you can. You have already made a difficult survival choice in having a double mastectomy. The chemo is the same exact choice you made earlier only instead you are trading long-term survival and health versus short-term discomfort.

And what are you going to get out of the chemo? Peace of mind. In the end, you will know you did everything you could to beat cancer and you took no easy ways out. There is no way of knowing you beat cancer for sure, and if you read this forum long enough, you will see hundreds of posts of people wondering if they are NED (no evidence of disease).

I know chemo is no fun. Colleen had TAC and that was a fresh slice of hell. Days 7 through 10 were awful. She also had TCH and that was much more tolerable. She only missed one day of work per cycle with that combination. She said TCH was like having a mild flu for a week.

Diane, you will be in our hearts and prayers,

Lee

[WomanofSteel]

I am one of those people that Lee speaks of. Although because of my age and my daughter, I opted for the recommended chemo my onc suggested because of the agressiveness of my cancer, I did not get Herceptin. I wonder everyday if this would have made a difference for me with my reoccurence. My personal feeling is that you should be agressive as possible with what treatment is offered you early on. The side effects are certainly worth the increase in percentages or years if you look at it that way.

[Louise O'Brien]

Dianne:

I see you're from Canada - so the treatment is relatively standard from province to province.

I was exactly where you are now - two years ago. Your discussion with the oncologist sounds exactly like the discussion I had with mine two years ago.

Under our health care system - Herceptin is combined with chemo. It was the chemo that horrified me. Like you - I considered walking away from the whole thing.

I can only tell you now - two years later - I am so thankful I did not. I chose full treatment and I know now I will never have to second guess myself wondering ... did I do enough... what if.... what if?? I feel I did everything I could, in my power to try to stop this thing.

Her2 is an aggressive little devil and no one knows how it is going to react. And Herceptin has had dramatic results.

If I had a friend who was Her2 positive I would do everything in my power to convince her to take Herceptin. The more research you do - the more you will find this out.

As for chemo - it's doable. Everyone says that but it's true. You have decisions to make and this is a stressful time but I'll step out on a limb here to urge you - don't walk away from Herceptin.

[Patb]

When I made my decision to do chemo, and herceptin,
I just wanted to say I did everything I could so no
regrets later. I have not had any. A/C was easy for
me, for some it is not. Herceptin was a breeze, I realize
I was lucky so for today I am happy with my decision.
patb

[caya]

Hello Diane,

I thought I would chime in here as I see you are from B.C., and I am from Toronto, so I am thinking you may be getting treated with FEC (a 3 chemo combo), then possibly Taxotere. This FEC-T combo is very commonly used here in Canada, as well as other commonwealth countries.
About a month after I finished my chemo, I started Herceptin, which I had every 3 weeks for a year.
I was also stage 1, you can see my stats. My onc. basically told me I was getting Herceptin, there really was no choice. Her 2+ is a tricky nasty devil, and you want to fight it from the onset with everything out there.
I got a port-a-cath inserted in my upper chest to do all my chemo and Herceptin, I strongly recommend you doing this.
As others have said, chemo is very "doable." Taxotere was worse for me, but I just kept thinking that the cancer cells felt worse than I did. The taxane chemos are proven to be very effective in fighting Her2+ BC. Herceptin is very easy compared to chemo. My main side effect was fatigue, some edema in my feet, legs. We are very lucky to have Herceptin - it really is the magic potion, especially for us early stagers.

And BTW, I had been having annual mammos since age 40, along with ultrasounds. Showing nothing. I had a breast reduction in October 2006, my PS found my 1.7 cm. tumour. A breast MRI before surgery found the second 1.0 cm. tumour. Dense breasted women are 4 - 6 x more likely to develop BC.

Good luck, we'll help you all we can.

all the best
caya

[G. Ann]

Hi Dianne,
Many have offered excellent comments. If you have doubts over chemo and Herceptin, a second opinion would probably help you decide. My treatment was four years ago and treatments keep being updated and improved. You've already been proactive in having bilateral mastectomy. My thought was to do everything possible so I wouldn't play, "what-if" game if I had a recurrence. I did not have taxane drugs and had delay getting Herceptin. Back in 2004 at my HMO, Herceptin was not prescribed for node negative. After begging and getting a second opinion outside of my HMO, I did get Herceptin. If a recurrence happens to me now, I'm sure I'll be "wishing" more had been done. You are in the right place to gain an abundance of knowledge through all the personal stories. In the end though, it is your decision. We're here to support you.

[rebecca0623]

I can only chime in and concur with what has been said by others. I was fortunate that I found this site prior to my surgery and my chemo consults (I went to 2 oncologists to find out their recommended txt, meet their staff and look at chemo rooms) so I think I was well informed about treatment options and side effects when I went to look for treatments. I was same as you - smaller tumor, grade 3. I was offered FEC then herceptin or TCH. One of the oncologists said, as did yours, node negative didn't really mean no cancer cells in nodes with our kind of aggressive disease, just meant not seen by pathologists! I thought that made sense to me. Because of this site and the greata information available here, I opted for the TCH to get herceptin early and perhaps lower chance of heart "events". I have 6 rounds of TCH with weekly herceptin in between. I was ready for many more side effects than I got and the peace of mind that I am doing everything I can is worth it for me (and my husband). The worst thing for me so far has been the port (necessary certainly but I hate it) and the neupogen shots between treatments because of my white blood cells. I have missed work only one day other than the big treatment days. "mildly flu-like" as it has been described here certainly describes my experience on most days - but right before the next TCH treatment (3 weeks out) I feel as close to normal as I can remember. Please keep us updated on what you decide and you will find great support and information here throughout your journey. Welcome.

[Louise O'Brien]

Caya is right. Because you're from Canada, your regimen will probably be six rounds - three FEC and three taxotere. You'll also be given medication to take two days prior to treatment - and one after. Take it.

Because I had treatment at this time of year - I set myself little goals. I would keep saying - when spring comes, I'll be done.

I would tell myself - when the flowers bloom again, it will be over for me. Herceptin was so much easier by comparison.

When I started in November - I knew I would be half-way through by New Year's. So I aimed for that and a small celebration on New Year's Eve.

When I had my fourth infusion in January - I knew I was coming into the home stretch. And that meant spring.

So that's how I did it. Step by step. I got a wig - but ended up wearing lots of funky caps instead.

And I took advantage of the "Look Good Feel Good Program" because we got hundreds of dollars worth of free cosmetics - and they were quality lines. Christian Dior, Mac, to name a few. I always did the full makeup thing when I went out - it made me feel better.

I was never sick but I think the medication had a lot to do with it.

I might have "hit the wall" on the fourth day and it wasn't because I was nauseous - I'd just be so tired I'd have to sleep all day.

By the second week I'd rebound and almost feel back to normal on the third week. But each time I'd tell myself - one more treatment down, just a few more left.

I did have to get injections when my blood cell count dropped but it rebounded.

And because it was fall and winter, we just hunkered down and watched lots of movies. I didn't go out much because it was cold season and the doctor advised against exposing myself to crowds. Especially when my blood cell count was low.

And the other advice about getting a portacath is good. It makes it so much easier.

When my hair started growing back again, I headed to my hair dresser who would trim it and keep it in shape. He'd get rid of the straggly bits because mine grew in quite kinky - it wasn't an attractive curl.

I had always wanted to return my hair to its natural colour and I knew there was some grey in it. It was just getting too expensive. Now it's dark with what looks like white streaks and I'm asked constantly who "does" my colouring. Sometimes I've started by telling them - "you don't want to know."

You'll also discover something you didn't know before - the chemo nurses. I can't describe how wonderful they are. When my buzzer sounded in the clinic alerting me that it was time for treatment, I'd be greeted by the most beautiful, smiling face. All of them were incredible and supportive. They made such an enormous difference.

That plus a crackerjack nurse I was asigned who worked with the oncologist.

So these are the "non-medical" things you can expect - some of the little bonuses that help get you through.

Just think Spring.

[juanita]

i can't think of anything that hasn't already been said, i just wanted to send hugs and prayers your way!