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Judieru
11-23-2013, 11:30 AM
It started as a small spot on my back, basil cell, which led to HER2 positive. The lumpectomy indicated the tumor to be very small (1.5x1 cm) and no trace of cancer in the 13 lymph nodes removed. I felt very lucky. The radiation doctor said I had a 10 year 96% survival with chemo and 93% with radiation. At 74 years old, it was a no brainer. Then I saw the chemo doctor. He said my cancer was very aggressive and I should have chemo. He wanted a Oncotype DX Breast test, but my insurance said it had to be HER2 negative before they would cover it. I see him Monday. All of the discussions have been about chemo. Is there anyone who has suggestions for me? I would like radiation with Herceptin shots.

Becky
11-23-2013, 11:57 AM
Her2 breast cancer is very aggressive and chemo is always recommended especially if the tumor is over 1 cm such as yours. However, your idea of Herceptin only may be a viable one but there have been no studies that this works. Is your tumor also estrogen and/or progesterone positive as well? If so, there are studies with metastatic patients (Stage 4 and you are Stage 1) that shows there is good synergy with Herceptin and an aromatase inhibitor together. I am just thinking out loud here. If the oncologist you see is not keen on Herceptin alone without chemo, see another. Not too many doctors want to do something that is not standard of care but you can get a second opinion and you should anyway so set up another opinion asap. We are here for you throughout your journey.

norkdo
11-23-2013, 12:15 PM
I second Becky's opinion. And offer this:
Throw at this bugger every single thing you can at the very very beginning. Postpone nothing. Get rid of your breast. Take no prisoners. please visit the staging polls threads. A person can start off with a tiny tiny stage one and move to stage three or possibly stage four in months. Not often. But it happens. Put on your battlegear. Welcome to the war. This is your life we're talking about.

AlaskaAngel
11-23-2013, 01:40 PM
If you are wondering, because the original trials for adjuvant treatment were done using chemo + trastuzumab, we do not know which patients may benefit from using trastuzumab alone and which patients likely do not.

One reason why the benefit of chemo may be less for elderly patients is because they are generally postmenopausal. One of the main effects of chemotherapy is to bring on menopause in older patients.

If you are interested, check out the clinical trials below.

Trials offered at present to try to determine what the benefit is OR is not for elderly HER2 positive patients:

http://clinicaltrials.gov/ct2/show/NCT01104935?term=trastuzumab+elderly&rank=2

http://clinicaltrials.gov/ct2/show/NCT00796978?term=trastuzumab+elderly&rank=6

http://clinicaltrials.gov/ct2/show/NCT01597414?term=trastuzumab+elderly&rank=1

We won't know unless we try to find out.

caya
11-23-2013, 04:43 PM
IMHO, the docs are expert in their areas - the rad onc is the radiation onc. He knows all about radiation. The medical onc. (chemo) onc. knows all about meds - chemo, Tamoxifen, AIs etc. Her 2 is very aggressive, Nordko is right -hit it with everything you can on your first (and hopefully only) shot out there.... If you are ER+PR+ too, then see what the med. onc. has to say about AIs like Femara etc.

They will check out your heart function with a Muga scan or echo for Herceptin. Don't think that because you are 74 you should take the "easy" way out. I know an 80 year old woman who was Her2+ and did chemo and Herceptin. She did fine. Get a second opinion as Becky suggests - from a medical onc. You need rads for sure because you had a lumpectomy. I went full tilt and had a mastectomy and did not need rads because my 16 lymph nodes were all clear.

Good luck. We are here for you. You are a Warrior Woman now.

all the best
caya

tricia keegan
11-23-2013, 04:55 PM
I agree with all the above and would urge you to look at all your options.

AlaskaAngel
11-23-2013, 05:05 PM
"Then I saw the chemo doctor. He said my cancer was very aggressive and I should have chemo. He wanted a Oncotype DX Breast test, but my insurance said it had to be HER2 negative before they would cover it."

Why would an expert like a chemo doctor recommend the Oncotype DX testing when the insurance company only pays for such a test if the patient is HER2 negative? Is it because the insurance company considers the HER2 positive diagnosis to be absolutely indicative of the importance of chemotherapy, but the oncologist doesn't?

???

michka
11-24-2013, 04:56 AM
Don't accept that you are too old for chemo. What is important is your health before BC. If your heart is OK and if you feel OK then you should be considered like any woman. HER2 is aggressive. There are discussions for stage I but not for the others. It is the only discussion to have with your onc. There may also be an option of chemo-30% dosage although, as it has already been said here, oncs like to stick to standards. But most important, it is Your decision after being informed of the benefits/risks. Herceptin should be considered. Michka

Judieru
11-24-2013, 11:24 AM
Every response is so appreciated. I am so confused by the names and abbreviations, but it seems that chemo is what I have to do. "keep informed" on what? Do I look up every medicine, every reaction is different. Do I ask a doctor from the same group for an opinion, or go somewhere else? My family says no to chemo - they know less than I. At this point I just want to get something started. My emotions are in control.

AlaskaAngel
11-24-2013, 12:21 PM
Judieru,

Anyone who has been through this understands that there are no hard and fast rules or garanteed outcomes. Everyone here would like to have a way to make the choice based on a definite clear basis.

However, the person that "does the most toxic treatment" in fact may recur. The tendency among health care providers and patients is to lean more in the direction of caution. It really depends on your own personal level of risk tolerance, combined with as much as you are able to determine about how high the estimate is about your risk level. Different medical institutions and practitioners sometimes vary in their approach in deciding which patients get which treatments. There are two main bodies that provide guidelines. One is used more in the US, and the other is used more in Europe and the rest of the world. The NCCN guidelines are the ones most commonly used in the US. You may want to check out the guidelines offered in Europe as well.

StephN
11-24-2013, 12:55 PM
Hi Judie -
Just stopped in here to help point you, as one can bat around looking at cancer sites forever!
NCCN stands for National Comprehensive Cancer Network.
Here is the link where you will find info on the specific subtypes of breast cancer - yes, SUBtypes. Clink on Breast cancer and some choices will appear. Check those.

http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#breast

AlaskaAngel
11-24-2013, 01:51 PM
The European one is the St. Gallen breast cancer conference.

It is interesting to see how much the highly experienced and trained professional opinions vary when coming up with recommendations for guidelines, no matter which set of guidelines is used:

http://www.sisbreast.org/Material/ArchivosPDF/consensus.pdf

Judieru
11-25-2013, 03:49 PM
I am strong, I can handle migraines so I can handle side effects of chemo. We will beat this.
My wonderful husband and two daughters went with me for the results of the DX - high risk, 67%, for such a small tumor and clear lymph nodes. Ecg Wednesday, port after Thanksgiving, start 90 min of Herceptin on Dec 9. then TCH (taxotere, cyoxan ,herceptin) every 3 weeks for 6 months.
6 weeks of radiation, Herceptin for 12 months and Arimidex for 10 years. We will tour the US in our RV before we leave.

AlaskaAngel
11-25-2013, 03:57 PM
Sounds like you've got your personal sense of direction in gear for the next decade of treatment - Best wishes!

A.A.

norkdo
11-25-2013, 04:54 PM
Judieru!!!! YAAAAAHOOOOOO! I am so so proud of you. I applaud your excellent decision to live!!!! You will live for many may years more because of toughing out a wittle belly ache for four months! Ask for Emend, get the doctor on call to write a prescription for it. it's not covered, but it will absolutely prevent nausea, guaranteed. take it in the car on the way home. yes it is expensive but i guarantee you will be happy you did. I am laughing at my sayin "wittle belly ache" in light of how angry and crazy the steroids they give you during chemo make one sometimes....come here for advice on how to tolerate the bone pain...i had none during the taxotere (or equivalent) second half of my chemo co of taking preventative ibuprofen (Advil) and Vitamins A and E, I think it was....while others went crazy with bone pain, i.e. Denise.

I adore what you said about how well you have gotten through tough things in your life like migraine, so what's one more tough thing to be a hero through? Atta girl!!! Seventy four is young. Radio said the other day it's now ninety that women live to on average. I am so happy for you. Because of gutting this out early in the game you have a great chance, please God, of living to see your grandkids graduate! Well done girl~~ Stay strong and ask us any question at all no matter how embarrassing, etc...we are here for you.

caya
11-25-2013, 05:13 PM
Great plan Judieru - you can do it- sounds like you have great support with DH and DDs.

Take the anti-nausea meds before you actually start feeling nauseous - you don't want to play "catch up" with that feeling.

all the best
caya

Judieru
11-25-2013, 06:12 PM
Thanks girls, I don't know if I should cry, or just go to bed.
Your thoughts are a comfort to me.

Coux92
11-26-2013, 01:19 PM
good for you! You are as young as you feel, you may, however feel a bit older 2-3 days after chemo, but as you said you are strong! My Oncologist prescribed Emend for me to take day of chemo and for the following two days. It was covered by my insurance. I only had very minimal nausea using this, I think I only took "as needed" medication ~ 3 times.
Stay strong and Be Well!

Judieru
11-28-2013, 10:33 AM
I have been put on hold for a while, my surgeon is on vacation and booked solid until Dec 11th for the port. Should I just look for a local surgeon to put it in and get started with the chemo? Don't like waiting and doing nothing. My husband isn't well, so we don't go anywhere. I am trying to keep busy with sewing and getting ready for tax season (I volunteer for that), and think I should eat anything in sight. I want to sleep whenever I'm not eating, everything is confusing.

MaineRottweilers
11-29-2013, 11:42 AM
I am surprised that your surgeon has put you off for so long. Installing a port is a very short procedure and should be able to be fit in before 12/11. If they really can't get you in before that, I would certainly look for someone who could. However, I am impatient and would not be comfortable waiting.

CoolBreeze
11-29-2013, 05:20 PM
I've been going to chemo for 4 years, and still, at 55 I'm pretty much one of the young ones in the group. When I started at 51, it was the first time I felt like a kid in a long time, lol. Nearly everybody is in their 70s - one lady goes and she is 90! You are most definitely not too old for chemo or any of it.

Cancer is not typically a young persons disease, although, of course, young people get it.

Do you need some kind of special surgeon to put in the port? An interventional radiologist did mine. I also did my first year of chemo without a port. It is not a requirement. The only reason I got one is because I did a drug called navelbine which was very painful on my veins. But I did taxotere, carboplatin and a year of herceptin without a port. And, they could only use one arm.

So don't let that slow you down.

norkdo
11-30-2013, 07:41 AM
Judi, get the chemo first. right away. "Please book me for first chemo asap/this week please." Get the port afterwards. Many of us here, inc myself had two or three chemos before getting the port in. Get the port in any way you can. But get that chemo into you via your arm this week. Call your nurse practitioner (NP) who works with your oncologist.

norkdo
11-30-2013, 07:43 AM
Cool Breeze! Ann! You are back! Yay!!!!!! So happy to see you!!!

Jackie07
11-30-2013, 08:34 PM
Hi Judi,

My Mother was 75 in 1998 when she was diagnosed with Non-Hodgkin's Lymphoma. She was also reluctant to undergo chemotherapy. I took an 18-hour flight home to persuade her. She lived 15 more years and saw two grand children getting married and enjoyed two great grand children's visit before passing away two months ago having a stroke at sleep.

The combination of Herceptin and Taxane has been proven to be effective for Her2 positive breast cancer. Recently Projeta has also been added to the combo.

Your doctor will run tests and scans to be sure that your heart is strong enough for the treatment. They will monitor you closely and give you meds to combat nausea and any other discomfort.

A 30-minute daily walk had helped me going through chemo (TCH) in 2007 while working full time. (No, I was not in my 70's. Just trying to stress the benefit of exercise/walking. :)

Whatever you decide, we are here to support you.

Kkmom
11-30-2013, 08:53 PM
Judieru,
You go girl!!! It sounds like you have a plan, now work it. As you go through the chemo, check back to this board, we are all here to help you through it - it will be a rocky road, but obviously-you will make it - you know how to advocate for yourself. When I was going through chemo this past spring, I saw a lady going through the same chemo as myself and she was 78.
I will be praying for you.
Pam