Need Advice

Spongemom

I have done A/C and have had my breast removed, because the A/C didn't shrink my tumor. It grew during treatment. My test for my lymphnodes all came back negative. My oncologest wants me to still to do Taxol and radiation. Does anyone have advice or have to go thru the same siuation.

Thank you

sassysally

I would listen to your oncologist. Was your cancer ER+?? I have had breast cancer three times, and have done alot of chemo. If your oncologist feels that you should do taxol and radiation, then by all means do it. Or talk with another oncologist if you feel uncomfortable and see what their opinion is. I feel that with cancer, you should do all that you can. Cause if you dont, one day you may wish you had. Good luck in your decision making. Hang tough.

tlmac

Hi spongemom, I had my breast removed before I did AC so my situation is somewhat different but I tend to be a person who errors on the side of caution. Cancer resistant enough to grow during AC would, at the very least, prompt me to consider other treatment options. A percentage of women with clear lymph nodes will experience a reoccurance of their cancer. If you're not convinced his course of treatment is in your best interests, why not get a second opinion?

DeeNY711

I agree with Sally and tlmac. You have to ask yourself whether you will sorely regret not doing everything you possibly could to prevent recurrence in the future. My answer to that always outweighed the fear of whatever oncology suggested.
Love,
Denise

Watercolor

Popular advice on another cancer web site -- do what you would regret least in the future.

inkblot

Hi:

Wondering how large your tumor was?

Just wanted to mention that some facilities now utilize a testing system to determine which chemo agents your particular cancer responds to best. It's done in the lab and uses your own cancer cells. It certainly seems to offer benefits over the standard "shot in the dark" approach. Sorry that I don't recall the exact name of the testing but your doc should be able to tell you much more about it.

It's a tough decision to make and even more complicated by the fact that your tumor continued to grow while you were on chemo. If your tumor was small and considering the clean nodes, you may have different options available to you other than the proposed Taxol and radiation.

I'd also get a 2nd opinion from an oncologist, unassociated with your current docs practice.
You must feel comfortable and confident about your decision, and understand all the ramifications and options and we cannot always do that without at least one additonal opinion. We want to know that we did all we could to eradicate our cancer but doing all we can must consider the absolute best approach to our particular cancer pathology, stage, etc.. It can be very helpful to also get your path report and do some research and reading to help you better understand what your particular tumor was about, as that can bring some greater insight into which route may be best for you. You may want to check out: www.nci.nih.gov
A good place to start, if you've not gotten into any research as yet.

Good luck to you!

Love, light and laughter,
Ink

hummingbyrd

Look at gdpawel's note on chemosensitivity. If I'm not mistaken they can take a tissue sample now and test it to see which chemo it responds too. Good luck. hummingbyrd

michelle1125

Do it. It reduces the chance of recurrence is what my doctor told me. I had my breast removed and am currently on chemo. I'll do 5 weeks of radiation afterward. Do anything you can to stay healthy. It's hard, but it's about a year out of your life to make sure you have a long, healthy one. Chemotherapy and radiation is the only way to make sure cancer cells that may be in your blood are killed so that they don't develop into yet another tumor. Hang in there.

gdpawel

hummingbyrd said:

Look at gdpawel's note on chemosensitivity. If I'm not mistaken they can take a tissue sample now and test it to see which chemo it responds too. Good luck. hummingbyrd

Chemosensitivity Testing

When a patient has an infection, doctors often send a sample of infected blood or tissue to a lab where they can grow the bacteria and see which antibiotics are most effective (called Bacterial Culture and Sensitivity Testing). Chemosensitivity testing is an attempt to do something similar for cancer; fresh samples of the patient's tumor from surgery or a biopsy are grown in test tubes and tested with various drugs. Drugs that are most effective in killing the cultured cells are recommended for treatment. It is highly desirable to know what drugs are effective against your particular cancer cells before highly-toxic agents are systemically administered to your body.

One approach to individualizing patient therapy is chemosensitivity testing. Chemosensitivity assay is a laboratory test that determines how effective specific chemotherapy agents are against an individual patient's cancer cells. Often, results are obtained before the patient begins treatment. This kind of testing can assist in individualizing cancer therapy by providing information about the likely response of an individual patient's tumor to proposed therapy. Chemosensitivity testing may have utility at the time of initial therapy, and in instances of severe drug hypersensitivity, failed therapy, recurrent disease, and metastatic disease, by providing assistance in selecting optimal chemotherapy regimens.

All available chemosensitivity assays are able to report drug 'resistance' information. Resistance implies that when a patient's cancer cells are exposed to a particular chemotherapy agent in the laboratory, the cancer cells will continue to live and grow. Some chemosensitivity assays also are able to report drug 'sensitivity' information. Sensitivity implies that when a patient's cancer cells are treated with a particular chemotherapy agent in the laboratory, that agent will kill the cancer cells or inhibit their proliferation.

The goal of all chemosensitivity tests is to determine the response of a patient's cancer cells to proposed chemotherapy agents. Knowing which chemotherapy agents the patient's cancer cells are resistant to is important. Then, these options can be eliminated, thereby avoiding the toxicity of ineffective agents. In addition, some chemosensitivity assays predict tumor cell sensitivity, or which agent would be most effective. Choosing the most effective agent can help patients to avoid the physical, emotional, and financial costs of failed therapy and experience an increased quality of life.

Fresh samples of the patient's tumor from surgery or a biopsy are grown in test tubes and tested with various drugs. Drugs that are most effective in killing the cultured cells are recommended for treatment. Chemosensitivity testing does have predictive value, especially in predicting what 'won't' work. Patients who have been through several chemotherapy regimens and are running out of options might want to consider chemosensitivity testing. It might help you find the best option or save you from fruitless additional treatment. Today, chemosensitivity testing has progressed to the point where it is 85% - 90% effective.

Conventionally, oncologists rely on clinical trials in choosing chemotherapy regimens. But the statistical results of these population-based studies might not apply to an individual. For many cancers, especially after a relapse, more than one standard treatment exists. There is rarely a situation where you would get everyone to agree that there's only one form of therapy. Physicians select drugs based on their personal experience, possible side effects and the patient's condition, among other factors. The system is overloaded with drugs and underloaded with wisdom and expertise for using them.

Chemosensitivity testing might help you find the best option, or save you from fruitless additional treatment. Another situation where chemosensitivity testing might make particularly good sense is in rare cancers where there may not be enough experience or previous ideas of which drugs might be most effective.

Finally, there has been a veritable deluge of new approvals of cytotoxic drugs in recent years as the tortuous FDA process has been speeded and liberalized. In many cases a new drug has been approved on the basis of a single very very narrow indication. But these drugs may have many useful applications - and it's going to take years to find out. Chemosensitivity testing offers a way of seeing if any of these new drugs might apply to your specific cancer.

Another Name

Cell Culture Drug Resistance Testing (CCDRT) or Chemotherapy Sensitivity and Resistance Assays (CSRAs) refers to laboratory testing of a patient's own cancer cells with drugs that may be used to treat the patient's cancer. A group of lab tests known as Human Tumor Assay Systems (HTAS) can aid oncologists in deciding which chemotherapies work best in battling an individual patient's form of cancer. The assay is a lab test performed on a biopsy specimen containing living cancer cells. It's used to determine the sensitivity or resistance of malignant cells to individual chemotherapy agents. Depending on how well the tumor cells respond to each chemotherapy agent, they are rated as sensitive, resistant or intermediate to chemotherapy. The concept is that you are better off using a chemotherapy drug that your tumor reacts to strongly than one your tumor resists.

There have been over 40 publications in peer-reviewed medical literature showing correlations between cell-death assay test results and the results of clinical chemotherapy in more than 2,000 patients. In every single study, patients treated with drugs active in the assays had a higher response rate than the entire group of patients as a whole. In every single study, patients treated with drugs inactive in the assays had lower response rates than the entire group of patients. In every single study, patients treated with active drugs were much more likely to respond than patients treated with inactive drugs, with assay-active drugs being 7 to 9 times more likely to work than assay-inactive drugs. A large number of peer-review publications also reported that patients treated with assay-tested 'active' drugs enjoyed significantly longer survival of cancer than patients with assay-tested 'negative' drugs.

How May a Patient Arrange to Have Their Tumor or Leukemia Tested?

Both fluid and solid tumor (200mg in size) specimens may be sent out via Federal Express or another overnight courier service for testing at one of more than a dozen labs around the country. Note that the choice of a lab is not a geographical consideration, but a technical consideration. All of the labs that are listed are experienced and capable of providing very useful information. However, the labs vary considerably with regard to technologies, approach to testing, what they try to achieve with the testing, and cost. These private laboratories have been offering these assays as a non-investigational, paid service to cancer patients, the average cost being about $2,000, in a situation where 20 different drugs and combinations are tested, at two drug concentrations in three different assay systems.

Assay-tests could be performed from ovarian cancer cells in pleural fluid (fluid from the cavity that surrounds the lungs) which is evidence of Stage IV ovarian cancer, or from Ascites (an abnormal accumulation of fluid in the abdomen), and of course lymph nodes. A worse case scenario is the spinal fluid (spinal tap) but only to diagnose Leptomeningeal Carcinomatous (ovarian). The labs will provide you and your physician with in depth information and research on the testing they provide.

By investing a little time on the phone speaking with the lab directors, you should have enough knowledge to present the concept to the patient's own physician. At that point, the best thing is to ask the physician, as a courtesy to the patient, to speak on the phone with the director of the laboratory in which you are interested, so that everyone (patient, physician, and laboratory director) understand what is being considered, what is the rationale, and what are the data which support what is being considered.

Some Resistance

The fact that some doctors don't agree isn't stopping many cancer patients from taking this matter into their own hands, and sending their live path specimens off to one of the above private labs for assay-testing to be done. In fact, approximately 10,000 individual patient specimens are currently being submitted for testing by more than 1,000 clinical oncologists, surgeons and pathologists annually in the United States. It seems probable that a self-educated oncologist, genuinely on the cutting-edge would tend to be aggressive in actual treatment beyond mere rhetoric and make use of running tests on the biopsy before selecting a chemotherapy option.

There has been much discussion about whether assay (in vitro) tests are of any use, as the in vivo response to a drug may very well be different in the body than in the petri dish. But, they said the same for Bacterial Culture and Sensitivity Testing. Doctors cannot remember a time when they didn't have this technology. It is a 'gold' standard. So will Chemosensitivity Testing. After all, cutting-edge techniques can often provide superior results over tried-and-true methods that have been around for many years.

Listing of Specialized Laboratories in the United States:

These labs will provide you and your physician with in depth information and research on the testing they provide.

Analytical Biosystems, Inc., Providence, Rhode Island. 1-800-262-6520

Anticancer, Inc., San Diego, CA. 1-619-654-2555

Cancer Therapeutics, Inc., Thomasville, GA. 1-229-224-6839

DiaTech Oncology, Brentwood, TN. 1-615-294-9033

Genomic Health, Inc. Redwood City, CA. 1-650-556-9300

Genoptix, Inc., San Diego, CA 1-858-523-5000

Human Tumor Cloning Laboratory, San Antonio, TX. 1-210-677-3827

Impath, Inc., New York, NY. 1-800-447-8881

Nu Oncology Labs, Virginia Beach, VA. 1-757-554-0926

Oncotech, Inc., Irvine, CA. 1-714-474-9262 / FAX 1-714-474-8147

Oncovation LLC, New York, N.Y. 1-212-514-2422

Precision Therapeutics, Pittsburgh, PA. 1-866-243-6639

Rational Therapeutics Institute, Long Beach, CA. 1-562-989-6455

Sylvester Cancer Institute, Miami, FL. 1-305-547-6875

Weisenthal Cancer Group, Huntington Beach, CA. 1-866-364-0011

jayjune

please do
hi i have had a left mastectomy, chemo, radiation and herceptin for a yr but guess what? it came back 2 months after my herceptin ended on my right lym node leading me to do a right mastectomy and the removal of virtually all my right lymph nodes. what am saying in essense is that despite aggressive treatment that happened. so by all means, pls be aggressive with ur treatment do what the doc says cos 'a i wish i had done it wont be any good" so pls i beg of u take further treatment. i am currently on lapatinib and xeloda now afterwards radiaton and then 1 yr of lapatinib. i am doing whats sensible so pls i beg of u be proactive take the treatment. lots of hugs and good luck with ur decision

New Flower

jayjune said:

please do
hi i have had a left mastectomy, chemo, radiation and herceptin for a yr but guess what? it came back 2 months after my herceptin ended on my right lym node leading me to do a right mastectomy and the removal of virtually all my right lymph nodes. what am saying in essense is that despite aggressive treatment that happened. so by all means, pls be aggressive with ur treatment do what the doc says cos 'a i wish i had done it wont be any good" so pls i beg of u take further treatment. i am currently on lapatinib and xeloda now afterwards radiaton and then 1 yr of lapatinib. i am doing whats sensible so pls i beg of u be proactive take the treatment. lots of hugs and good luck with ur decision

Jayjune
Welcome to the site. Very interesting discussion.
Chris,
please take a look. I hope you will be able to do testing prior next round of Chemo.
New Flower