Not sure if I'm providing best care for mom - 1289589

Beautifullife,

I will let the moderators answer the questions, but I just wanted to let you know I will be thinking about you and your Mom and sending warm hugs of support across the internet. I know how agonizing those times after the diagnosis can be, and the months after my wife's diagnosis (stage IV lung cancer) until her first treatment seemed like eternity. It seemed like there was test after test being performed without anything actually being done, but in retrospect I have now seen how important it is to try and understand the nature of the cancer (each cancer and each patient is different) so that the best course of treatment can be planned.

Continue being a strong advocate for your Mom's care, and never be afraid to ask the doctors to explain anything you don't understand. Don't be afraid to ask the doctor's to clearly explain the nature of any clinical trials, and the staff on the website has also been great for me in answering remaining questions I had after talking to the doctors. This website has also been of great help to me in understanding the nature of different types of cancer, and the current state-of-art in their treatment.

Despite all the anxieties, and fears, and stresses of the diagnosis, may you still be able to find some hope, and peace, and love, this holiday season.

Scohn

Welcome to Grace. I'm sorry for the wait here. Just a quick note before I look for specific info to confirm my words. It's usual to wait for weeks even months to first treatment and it seems like valuable time slipping away however this isn't what stats say, even for the slowest of systems, medicaid and VA. I post again when I get the info I want to show you.

Janine

Below is a blog post by Dr. Nate Pennell a medical oncologist who specializes in lung cancer. The reporting data is about lung cancer both curable and incurable. The message is that it takes a while to get started but data clearly shows there's no survival benefit in getting started earlier, again non small cell lung cancer specific. No matter lung or breast cancer new, better, and often less toxic options are available for some with specific genetic mutations and testing is the only way to find out if these treatments are an option.
http://cancergrace.org/lung/2009/11/06/delays-in-treatment-for-lung-can…

Communication is another issue. Most often your very busy oncologists won't delve into specifics about a person's cancer unless asked specific questions (It's too detailed a subject for any oncologist to know where a person lies on the spectrum of understanding so unfortunately it's easiest to skip any kind of explanation. and there's not a list of good questions past what stage and what options (options are still being worked out with your mom). As you move through the process you will find that each person's cancer is too individual to take a list from the web which means that reading about your mom's specifics from reputable resources is important. We have some excellent blog posts but are a couple of years old. Unfortunately our faculty breast cancer specialist has been busy with her practice, research, attending/presenting and isn't available to answer questions at this time.

con't...

Waiting is the hardest part. But getting it right to first time is important and that takes time. What I've found to be the most helpful of suggestions comes from Dr. Weiss (well everyone at some point here on Grace), "Every cancer therapy has two purposes: to improve duration of life, and to improve quality of life. Every other measure of chemotherapy success, such as response rate or progression-free-survival, is a surrogate to these two true goals. I am using the broken record as my pseudo-apology for repeating this mantra repeatedly on GRACE, to my colleagues, and in my mind every time I make a treatment decision." this quote is from a blog post on the subject of treating lung cancer but applies to any cancer treatment the post, http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…

If you and your mom aren't getting what you need from her care team first let them know of your concerns. It's easy to misunderstand the workings of a cancer center and they are usually happy to help. If she's still not comfortable that she's getting the best care it's usually possible to get a 2nd opinion at a major teaching/research center that can steer her in the right direction or confirm her team is on the right track.

I hope some of the is useful.
All best,
Janine

Scohn, as usual you've described a situation on point. Cyber hugs and definitely some excellent cheer this yule season.

The stats have changed in the intervening years from the 2009 blog post and do show, at least in the case of lung cancer (that is all have looked at) that treatment delays do adversely affect survival. I was interested in this because it was three months from my first very suspicious xray to surgery in Canada.

It was an awful wait, and it adversely affected my survival probability.

Here is one recent paper:

Effects of Delayed Surgical Resection on Short-Term and Long-Term Outcomes in Clinical Stage I Non-Small Cell Lung Cancer
By: Samson, Pamela; Patel, Aalok; Garrett, Tasha; et al.
ANNALS OF THORACIC SURGERY Volume: 99 Issue: 6 Pages: 1906-1913 Published: JUN 2015

Background. Conflicting evidence currently exists regarding the causes and effects of delay of care in non-small cell lung cancer (NSCLC). We hypothesized that delayed surgery in early-stage NSCLC is associated with worse short-term and long-term outcomes.

Methods. Treatment data of clinical stage I NSCLC patients undergoing surgical resection were obtained from the National Cancer Data Base (NCDB). Treatment delay was defined as resection 8 weeks or more after diagnosis. Propensity score matching for patient and tumor characteristics was performed to create comparable groups of patients receiving early (less than 8 weeks from diagnosis) and delayed surgery. Multivariable regression models were fitted to evaluate variables influencing delay of surgery.

Results. From 1998 to 2010, 39,995 patients with clinical stage I NSCLC received early surgery, while 15,658 patients received delayed surgery. Of these, 27,022 propensity-matched patients were identified. Those with a delay in care were more likely to be pathologically upstaged (18.3% stage 2 or higher versus 16.6%, p < 0.001), have an increased 30-day mortality (2.9% vs 2.4%, p = 0.01), and have decreased median survival (57.7 +/- 1.0 months versus 69.2 +/- 1.3 months, p < 0.001).

This is a study and all that involves is looking at medical records. They don't know the full story of each individual. And it also involves only stage I. This person posting is beyond stage I since they have breast cancer with mets to the lung. Getting to a full diagnosis takes time, but to me it should take no more than 8 weeks at the most to get to a treatment plan. These constant delays are stressful on the patient and family.
I never went more than that and I that was with a second opinion each time.

Beautifullife, not sure where you are, if you're in the US or not. But if you are in the US, then locate a NCI top rated cancer center. See link. Wishing you the best.

Take care, Judy

https://www.cancer.gov/research/nci-role/cancer-centers/find#

As Judy states, retrospective studies comparing the experiences of patients in numerous trials, though helpful, do not provide the same level of accuracy as a randomized trial of a selected patient population. Randomizing a large enough population helps minimize the effect on results caused by differences in ethnicity, gender and age which may skew the results of a retrospective study. Of course, the question of the effect of delaying surgery can't be tested in a randomized trial for ethical reasons (who would want to be in the group whose treatment is delayed?)

Though it seems pretty clear that delaying surgery/treatment in early-stage disease can have negative effects, it's much less clear in stage IV patients. Unless a patient's cancer is very aggressive, requiring immediate intervention, response to treatment is more critical, and as Janine stated, mutation testing and other pre-treatment steps become more important to determine proper therapy.

JimC
Forum moderator

The blog post from 2009 used above to argue that delaying doesn't affect lung cancer survival
http://cancergrace.org/lung/2009/11/06/delays-in-treatment-for-lung-can…

also referred to a retrospective study not a randomized trial.

Indeed there are many factors that can go into delays, that is why the paper I referred to did a propensity matched study where they paired up patients based on similar characteristics and used other methods to get at a pure delay effect. I think the fact that they found that upstaging at pathology went up in the patients that received delayed surgical treatment is consistent with common sense. Cancer spreads and the longer you wait the more likely it is to have done so.

The situation with metastatic lung cancer is going to be less likely to prove any association for a number of reasons. One is that in many countries it appears that patients who are 'less sick' are treated later than patients who have a lot of symptoms. This is probably because of triaging systems in places with socialized medicine. There are also many more variables so it is more difficult to a 'propensity matched' study comparing outcomes.

Just a note to our original poster. Jim's 2nd paragraph is the important info that spans all cancers that are not curable. Slow and steady can bring the longest survival with best quality of life. It's been compared to running a marathon as opposed to a sprint. Unless your mom needs immediate attention for pain or difficulty breathing or eating or any other cancer related symptoms it's standard to let the testing finish before proceeding. And as every person with cancer or who had cancer will tell you waiting plays horrendous mind games. And as I know from personal experience it's pretty awful on the loved ones who take care of these people.

Onthemark, I'm going to make sure our faculty see the links you've provided. Thanks a million!

Take care you all!

Janine

Unfortunately our faculty breast cancer specialist has been busy with her practice, research, attending/presenting and isn’t available to answer questions at this time.

The current thinking is that if the cancer is metastasized as your mom's is the goals are longevity and quality of life and this can be different for different people. In fact most of our faculty have shared experiences with patients where there just isn't an answer to whether starting treatment, holding it or taking a break or not is determined by how anxious the patient is to be on treatment or take a break. It's such individualized planning that there's almost always room for preference being as important as a standard treatment.
We know you are experiencing some of the toughest times of your life right now and we want you to know we'll do what we can to help. You say you'll work at staying calm, I used to wonder where the screaming rooms were in the hospital when my husband was sick. We started a thread a few years ago entitled Holding Your Nerve. There's a lot that is difficult. Stay true.

All best,
Janine

Hi beautifullife.

If your mother is triple negative, you might also ask your doctor about considering the current phase I trial my wife is on (depending of if it is available in your area) in the future if your mother doesn't respond well to the other trial therapy or standard chemotherapy. Although my wife has lung cancer, the trial drug (Pfizer drug PF-06647020) was also developed to help in breast cancer, and the current trial includes triple negative breast cancer patients for whom a prior treatment stopped working. If you want the information to give your doctor, the clinical trial is "NCT02222922". I just mention this to let you know there are a number of continuing trials out there for treatment, even if you need one beyond whatever your mom's initial treatment is.

Take care,
scohn