Stage IV Mastasized to Lungs-Newly Diaganosed

I can empathize with your desire to have a more definitive understanding of your future with this unfortunate recurrence. But I suspect one reason that your doctors are hedging their answers more than they might have in the past is due to the increased use of new treatments like immunotherapy that have really just begun to enter the mainstream after years in trials.

If someone has the genetic profile to benefit from one of these new treatments, all the prior estimates of life expectancy are off the table for now. As you may have read in the posts originated by "Little_Sister757," her sister is scheduled to start on Keytruda, an immunotherapy as a front-line treatment, instead of her doctors first trying conventional chemotherapy. While other ladies on the Board have also been given Keytruda, this is the first time that I can recall where it's been used as a first-line treatment outside of a trial for someone on (or related to) to a member of this site. 

And if you didn't receive chemotherapy as part of your initial diagnosis in 2015, the conventional chemotherapies may work well for you now as your body hasn't developed a resistance to those drugs.

There are a number of ladies who still post that are/were Stage IVB, some with recurrences. While you wait for some of them to respond, you can also search older posts for terms like "recurrence" "Stage IV" or "metastasis" to read what some of those ladies have gone through and their results – again keeping in mind that they didn't all have the option of trying some of the new treatments now available.

I'm sorry you had to join this site after being NED (no evidence of disease) for several years, but you will find lots of support from those on this site as you embark on the next battle in your own war with cancer.

spudcat, when I was first diagnosed I asked if there was anything to read online and was told:  stay off the internet.  Stats are old and you are statistic of one.  As you see, there are good women here and they are here to lend and ear and tell you what they have experienced.  You are not alone.

.Members of this group come from all over the world. We are human beings first here. No borders. Wish that were the way of the world. 

By the way, we are neighbors. I live about 20 miles from the New York/Canadian border. 

Welcome to the forum! Wish it was under better circumstances. You have come to a good place for first hand information from your “sisters” in the fight of our lives. Others have provided you with some great suggestion. Many of us have learned what to ask and demand in order to survive. I can tell you are a strong woman and have been through a lot. The uncertainty is so hard to deal with. We just want the BEST plan of ACTION to overcome cancer.  

Look up the NCCN website for the standard of care for your stage/grade and reoccurence. Personally in my case I had 26 lymph nodes removed plus a para aortic node.  I will keep you in my prayers. ((HUG))

Lori

DKK said:

Pay no attention to numbers

welcome! You will find the kindest and most wonderful support group here.

i just wanted to expand on what cmb  said.  It is absolutely true that the docs no longer feel comfortable saying you have 2 years left, or whatever. It is due to the new targeted and immunotherapies that have skewed all the old results.  

A dear  friend PhD cancer researcher told me the survival charts are FIVE years old!   Five years in medicine, like technology, means the numbers are obsolete.  Moreover,  as an article from the WSJ or NYT recently  noted, docs are even hesitant to recommend hospice. One doc recounts his experience where he placed a patient in hospice but she ended up getting a type of immunotherapy.  She walked out of hospice and has no active disease. So the vaccines and immunotherapis and targeted anti cancer drugs are changing the entire survivalists landscape.  While that is difficult for us living in uncertainty, it’s also the good news.

We look at survival rates for Stages III and IVs and shudder ... until we look more carefully at the numbers.

Take this site itself: https://www.cancer.org/cancer/endometrial-cancer/detection-diagnosis-staging/survival-rates.html

Fifteen percent for Stage 4B! Scary! And it is. Survival rates for Stages III and IV ARE scary. But another look at the text shows that these include people diagnosed between 2000 and 2002! Treatment and medical knowledge have  changed siginficantly in the last 16 years or so.

Well, then, if's off to another site:  https://seer.cancer.gov/statfacts/html/corp.html. The rate is so, so much higher at 16.3! (A little sarcasm there.) But a look at that data shows that data was collected between 2008 and 2014. A little more of a cause of concern because the data seems closer to 2018, but again, things have changed a whole lot in ten years!  Admittedly, though, the 2008 data might be useful for 10-year suvival rates ... for now. 

It does concern me that suvival rates are inching up, rather than going up significantly. I can't lie there. But the more I look into this cancer, including various studies. the more contradictory and confusing the results are. 

These survival rates, by the way, include women who refused treatment, women who unfortunately did not have access to good medical care for their cancer, women who were much older at age of diagnosis, women with co-morbitiies that severely affected treatment, etc. The cancer.gov site allows you to enter some variables, such as race and age of diagnosis, but there are so many others. 

And here is the punchline ... there are some women who have the most dire prognosis who beat the odds and suvive for many years! It is no wonder that doctors are reluctant to provide survival rates. This is a caprcious, unpredictable disease that I think can even confound oncologists. 

spudcat said:

Thanks so much ladies, I

Thanks so much ladies, I really appreciate all of you!!

I had my first radiation treatment today on my lung.  I am tired as it was a busy day, treatment and calibration the machine, meeting with the nurse to go over side effects, then meeting with my Rad Onco. which wasn't planned, they sprung that on me when I arrived. 

What I found out from her, (when she told me the original diagnosis I had a hard time listening to anything after) my tumour is in operable due to it being on the main bronchus on my right lung.  The tumor is also wrapped around the bronchus which is what was causing the narrowing of my airway. 

DerMaus: I had external radiation on my pelvis first time, this time it is my chest.  I do not know what CyberKnife is and not sure I would be eligible due to where the tumor is situated. 

I am in radiation until May 8 and I also visit with the chemo team to discuss if chemo is the right course for me or what would be.  This, is what .  radiation oncol told me today.  I hope not wish, no pray they can do another course of action instead of chemo.  But I am afraid with my luck and from what I have researched it looks like it will be chemo.

I also wanted to ask you ladies...have any of you tried a holistic approach?  I am curious because I saw a few videos on youtube and a couple articles where people opted out of the traditional chemo -radation and cured themselves or maintained their health (for uncured/advanced cancer) with a holistic approach.  I do not know much about this area and was just curious.  There is SO much information out there that is can be quite overwhelming and my head starts to spin.  I am curious and have made it a part of research to find out more.

Pleae feel free to share.

ConnieSW:  I'm in Ottawa Ontario so we are neighbors!!

 

I was diagnosed last September and I'm 3a. I wasn't thrilled about going through chemo but, while not fun, it is definitely doable. I was allergic to the standard Taxol and carboplatin regime, so I did adriamyacin and carboplatin. I did get sick and I did lose my hair, but after the first few days I felt much better. While I think eating healthy, exercising, etc is an important part of dealing with cancer,  I would not count on it to get rid of or manage cancer without chemo or radiation. Even athletes and really healthy people have gotten cancer. So while I don't want to do chemo or radiation I do it because the odds are better. I had chemo 6 times, and am now getting radiation 25 times. After the doctor would like me to do 1-2 more times of chemo.

I agree that survival rates have increased. When I first looked at the statistics the survival rate is 58% for 3a. After talking with my oncologist (who didn't want to quote statistics) said with chemo and radiation it's now more like70-75%. And that stastic includes people who are older and less healthy than I am according to my doctors.

spudcat said:

Thanks so much ladies, I

Thanks so much ladies, I really appreciate all of you!!

I had my first radiation treatment today on my lung.  I am tired as it was a busy day, treatment and calibration the machine, meeting with the nurse to go over side effects, then meeting with my Rad Onco. which wasn't planned, they sprung that on me when I arrived. 

What I found out from her, (when she told me the original diagnosis I had a hard time listening to anything after) my tumour is in operable due to it being on the main bronchus on my right lung.  The tumor is also wrapped around the bronchus which is what was causing the narrowing of my airway. 

DerMaus: I had external radiation on my pelvis first time, this time it is my chest.  I do not know what CyberKnife is and not sure I would be eligible due to where the tumor is situated. 

I am in radiation until May 8 and I also visit with the chemo team to discuss if chemo is the right course for me or what would be.  This, is what .  radiation oncol told me today.  I hope not wish, no pray they can do another course of action instead of chemo.  But I am afraid with my luck and from what I have researched it looks like it will be chemo.

I also wanted to ask you ladies...have any of you tried a holistic approach?  I am curious because I saw a few videos on youtube and a couple articles where people opted out of the traditional chemo -radation and cured themselves or maintained their health (for uncured/advanced cancer) with a holistic approach.  I do not know much about this area and was just curious.  There is SO much information out there that is can be quite overwhelming and my head starts to spin.  I am curious and have made it a part of research to find out more.

Pleae feel free to share.

ConnieSW:  I'm in Ottawa Ontario so we are neighbors!!

 

Beautiful city-love the tulip festival.