Newly diagnosed with Stage 4

AnneMarie503, I got my Stage 4 dx in March of this year after 24 years cancer-free, and it was total, out-of-left-field, surprise piece of crap diagnosis. I have been exactly where you are now except that I was not taking Celexa and i was eating a healthy diet and working out in all the right ways - literally since the 1980s I have been doing workouts. I have beat myself up for not working out every day of the week instead of the 4-5 days a week I was working out. I have beat myself up for drinking wine with dinner, for not eating enough vegetables, for not meditating until just the last few years and even not drinking enough water. I took this fear all to my oncologist who told me that this is all just random. Look at the people who smoke for 50 years and never get cancer against those who smoke for a few years, quit smoking and get lung cancer 25 years later. It's all random and science doesn't really know how we can avoid cancer at this point. You WILL be able to let go of that blame toward yourself I am sure. I recently had someone tell me that I caused my cancer to come back by not eating a plant based diet. I literally could have slapped her and part of me wishes I had. Nobody caused my cancer. Cancer cells caused my cancer.

Cancer is a lonely disease. No question that has been the hardest thing for me. There is no one who can understand what's in your head on a good day. That's for you to understand. But the big fear and uncertainty and loss - well that's giant and who would want to have to process that. Except that we don't really get a choice about it. You are not alone my dear. You have a ton of people here who understand and hopefully you'll find some really good friends in your life who will share that space with you while you are sad and afraid.

Now for the good parts. I have come to understand love in a deep way that I didn't understand before. I thought I knew all about it but there's always more in life to learn. I have also come to understand how wonderful I am. Really. I've learned to say no to requests for my time and I've learned to say no to people who no longer belong in my life.

I've learned lettering, watercolor painting, practiced the piano more and made time for writing. Just for me. I offer myself hope by learning new things that will make me and others happy.

And finally, my oncologist said to me 24 years ago, 'whenever you feel sad for yourself, try to find a way to be of service to others'. He could not have been more right. At the time I thought that he was talking about religion, but I have learned to bake Gluten Free cookies for my celiac son and thoroughly fall in love with the happiness it brings him.

There is a LOT of hope.

AnneMarie, What you are feeling is perfectly normal. I want to start my response by telling you what my breast surgeon said to me when I was diagnosed as stage IV more than 4 years ago. NONE OF THIS IS YOUR FAULT! There are many people wth mbc who did all the “right” things. There are many people who never get cancer or a recurrence who do all the things we think are wrong. Stop beating yourself up about the past. A little weight gain did not cause your current situation. A mild interaction between two medications did not cause your cancer to spread. The cancer metastasized fairly soon after your first occurrence. It is entirely possible (and probable) the some cells had already migrated from your breast to other areas of your body when you were first diagnosed. It was not detectable at that time or perhaps scans were not done. The fact is, no one knows why some cancer spreads and some does not. There is nothing, NOTHING, you could have done to prevent this. We can’t and shouldn’t live our lives based on “what if I had” or “if only” or “maybe I should have”. We need to move forward.

As I noted earlier, I have been living with metastatic breast cancer for more than four years. My life is quite normal. I travel, I play with my grandchildren, I enjoy gardening, I go out with my husband and friends, etc. I am lucky enough to feel good. I have had to change medications several times over the years, but my MO and I always discuss the best plan for me. So far, so good.

I have to tell you that the first few months were very difficult for me. I thought I would be facing my last summer, my last Christmas, my last New Year. I even cleaned out my closets and drawers to make it easier for my family when “my time came”. That left me with very few clothes to wear. Once I had been in treatment for a few months, and I found this sight and read about others’ experiences, I realized that I could be around for many more years. Needless to say, I had to go shopping, and now my closets and drawers are full. I intend to stick around for a long time. You will soon discover that there are people on these boards who have been stage IV for 8, 10, and even more years. Treatments have improved. Quality of life has improved. Things are not as hopeless as you might think they are.

Poke around the Stage IV forum and find some threads that you like. There are many helpful, supportive people here. There are threads for those of uswith liver mets, bone mets, and lung mets. The bone and liver met threads are usually pretty active. There is also an Ibrance thread that has good advice and lots of knowledgeable people. I recommend you read some of the recent posts and join in whenever you are ready. You will be welcomed and can have your questions answered. You are not alone. You have a lot of company here.

Let me know if there is anything I can do to help you. One bit of advice. Stay away from google. It is full if outdated information. It can cause unnecessary worry, and you don’t need that,

Hugs and prayers from, Lynne

Hi AnneMarie,

Sorry to join this conversation late but you have already received excellent advice. I’m so happy to hear you are getting over the blame game. As others have said, it’s a crap shoot and, unfortunately, all of your friends may not be cured. I was 16 years out (went through chemo, radiation, Tamoxifen and an AI) when I experienced similar symptoms - shortness of breath and a cough. By the time I was diagnosed 2 months later I had a massive pleural effusion in my right lung (more than 3 litres drained at one point) and extensive bone mets.

Like you, it was spreading to my lymph nodes when I was originally diagnosed. All it takes is a few cells spreading and waiting. Chemo won’t wipe them out if they aren’t growing. They just sit and wait. Nobody knows what triggers them, what turns those cells “on” so they start to divide. All to say that there was no predicting this.

But there is much hope. I also imagined the worst but my oncologist told me he expects me to do well for a good long time. It’s coming up on three years, I’m still working full time and have a pretty full life. I also say no more and treat myself to whatever I want 😉 (there has to be some perks after all!).

You do need to get rid of that fluid. I had a PleurX Catheter inserted which allowed me to have my lung drained at home twice a week. Huge relief so ask about it. If you want more info on that PM me or go to the lung mets thread.

We’re all here for you and understand completely what you are going through as we have all been there in our own ways. Sending a big hug and wishing you smooth sailing on Ibrance and Arimidex.

Pat.

AnneMarie503, it's understandable to try to find a rational explanation for your recurrence, although metastatic breast cancer is such a confounding and complex disease that even experts in the field have no definitive answers.

You've received excellent input, and I'd like to echo Sadiesservant's advice regarding options for draining fluid on the lung (known as pleural effusion). I also had a Pleurex catheter, which I found convenient and painless to drain at home while being fully mobile while it was implanted.

Below from my book, "The Insider's Guide to Metastatic Breast Cancer" is a list of the three options for draining pleural effusion. For additional infpormation about the book, which is also available in a complimentary .pdf, please visit: https://www.insidersguidembc.com/about

Sending you good wishes!

For patients who have pleural effusion, there are three methods of draining the fluid to provide relief:

Indwelling (Pleurx or Aspira) Catheter: This is the surgical insertion, under general anesthesia, of a small tube placed temporarily into the pleural space that allows the patient or his/her family member to drain the fluid into a bottle as needed. Patients with an indwelling catheter are fully mobile and are not "attached" to the draining bottle except when draining the fluid. Once there is no more drainage at all, the catheter is removed either in the doctor's office or an outpatient procedure. Overall, indwelling catheters seem to help prevent the fluid from building up again, provided that the patient's systemic treatment is working. The Pleurx catheter works via suction, and the newer gentler model is the Aspira catheter, which is a bit less uncomfortable because uses gravity instead of suction for draining.

Pleurodesis (sometimes referred to as a "talc procedure") is a process in which substances, such as talc, are used to try to get the edge of the lung to stick to the chest wall to decrease the chance of the fluid returning. Although this procedure seems to help prevent the fluid from building up again (provided that systemic treatment is working) it can be painful and usually requires a brief hospital stay. Some patients have reported discomfort months and even years after the procedure. In rare cases, the procedure may fail altogether, rendering it impossible to drain the fluid thereafter because it becomes trapped in a honeycomb of many small pockets (called "loculations"). Of all options for draining malignant pleural effusion, this appears to be the most risk-prone.

Thoracentesis (sometimes referred to as "tapping") is an outpatient procedure that involves placing one needle per required side into the pleural space. Although local anesthesia is administered, this procedure can be uncomfortable and may cause scarring if repeated over time. The procedure also does not hinder fluid buildup again. These tips may make the procedure less uncomfortable: 1) Request a numbing agent before the needle is inserted to feel more comfortable after the procedure. 2) Request that the fluid to be withdrawn slowly in order to avoid low blood pressure or a "fainting" feeling afterwards. 3) Lean forward with a soft pillow supporting your head and upper torso while the draining is underway via your back.

P.S. Yes, it truly is possible you have years left. The idea of getting affairs in order is never a bad idea, tho, regardless if a person is dealing with disease or not. And what’s surprising is the relief you will feel when those things are taken care of. They’re in place, you move forward with life and living.

Everytime the pleura is drained, the body looses nutrients, lymphocytes and protein, making sure that nutrition after the thoracentesis is aimed at replenishment of the lost nutrients, the recovery can be better. Incase of loculations or fibrin depositions, discuss the options of intrapleural instillitions of fibrinolytic agents such as TPA etc. Recovery from a trapped lung is difficult and can leave one with chronic restrictive respiratory problems.

AnneMarie503, everyone has given you good advice. The spread wasn't your fault.

In my case, my cancer IS all my fault. When I first felt a lump a long time ago, I kept telling myself it was nothing. I've always had fibrocystic breasts, so it was probably just that. No one in my family ever had breast cancer, no one...so it couldn't be that. It never really grew as far as I could tell by touch. So it was nothing. Besides, I didn't have a gynecologist at the time since mine retired. Plus, I was in a very bad place emotionally at the time. This is what I rationalized in my mind for a very long time. A very long time. I didn't get checked until a long time later after I felt another lump in my armpit. By this time the cancer was in my lymph nodes. If I had just gone when I first felt the lump in my breast I wouldn't have been diagnosed with Stage 4 metastatic 8 years later. But here I am. Because of my stupidity. My kids and husband are having to deal with this because of my stupidity. I will never forgive myself because of this. I try not to dwell on it but the reality does hit me sometimes. It's hitting me now. Sorry to add my pain to your thread, but I needed to type this out.