I am writing this because some of the recent notes have brought up the whole idea of when to act immediately and when to wait to see the onc. I write this as a long timer (15 + years with MBC) and one who has been trained as a bc patient advocate (National Breast Cancer Coaliton's ProectLEAD) Once we have an advanced cancer, we really don't have the wiggle room we used to about taking care of ourselves, seeing our doctors, getting medical attention ASAP via ER! Any symptom, possible side effect, episode, or single event that could possibly be cancer related needs evaluation. IF it involves bleeding or possibly the brain (!!!!) should get us going to the ER right this minute. Okay to phone the onc on the way if you are not driving! A little dizziness should not be overlooked or put off until tomorrow! If it is during your onc's office hours and you can get right thru to a nurse, phone immediately and do what they advise. But if you have an episode of total confusion, dizziness that keeps you from getting up or walking, pass out or are told you were hard to wake, go to the ER! My "rule" for myself is that if it even crosses my mind to go to the ER, I go! Same with calling my onc or any of my other specialists. We women tend to be really wonderful at caring for those around us and are often not as proactive about taking care of ourselves! We need to get over that yesterday! It is absolutely better to over react occasionally than to under react and miss out on a chance to get a major problem addressed as early as possible and pay the consequences which could even be death! I wish I could send this with flashing red lights, sirens and every imaginable attention getting device! I have followed this rule for nearly the whole 15 years I've had this lousy rotten scary cancer and have never been told I should not have called or gone to the ER! Even an ER out of state when I was on vacation. I also carry a list of my meds and why I am taking them and the names and phone numbers of my doctors. I hope everybody here will read this and take it seriously!
When to go to the ER: I am writing this... - SHARE Metastatic ...
When to go to the ER
Thank you for sharing this valuable information. I will definitely make a list of all my meds and why I take them.
Excellent post!
Its so true/ I know for me as a nurse, mom and g
My phone keeps doing this jumping agh!! As a nurse, mom and grandma I am the caregiver and push through fatigue. But I have learned not to take anything lightly with mbc. I call right away if I don’t feel right and I go in. Too many things can be critical if not caught early.
Thanks for the reminder💕
I am a clinical social worker and also an Episcopal and worked as a hospital chaplain so I don't have the medical knowledge that an RN has but I sure have had a good inside view of the health care system! And I understand having trouble with modern technology! LOL Alot of it is so far over my head...... and my laptop does things that drive me crazy, too. We live out in the boonies where cell phone reception is not good...... I'll probably still have a land line for the rest of my life. It's always good to know that there are RNs here! The onc RNs I've seen are amazing!
Thanks for caring and sharing. You're an angel! xo
Thank you for you help and inspiration x
What if any nutritional advice would you advocate. Do you take any supplements.
Much love 💕
Right after initial staging, I had a second opinion appt with a bc specialist onc at a major cancer center. My husband and grown daughter were with me and my daughter had a friend who had taken some six week class on nutrition and thought she knew everything and kept giving me weird advise, so I asked that onc about diet and she said that this was not the time for me to go on any diet that was difficult to stay on. I grew up eating pretty healthy--plenty of fresh fruit and veggies, very little pre-prepared food, just not alot of the junk food that kids eat today. And I cook alot like my mother did, most everything from scratch, though I do buy bread. I've been to several bc conferences (MBCNetwork, NBCCoalition, San Antonio BC Symposium) and at the last couple, there has been talk of cancer being an inflammatory process. My previous primary care doctor, a DO, had just given me a list of things to use to fight inflammation: a cup a day of tart cherry juice, fish oil, glucosamine-chondrotin, and turmeric (aka curcumin, cumin). I started off just with the cherry juice and turmeric and saw a big reduction in the swelling in my left ankle, which I'd shattered in a fall on the ice, totally not cancer related. I keep all those on hand now but I don't remember to take them every day. Often just once a week or even less. My onc okayed them. I really don't think my longevity with this cancer is due to anything other than the standard treatment of anti-hormonal meds plus bone mets meds. I seem to have a very lazy easily controlled bunch of cancer cells. My dad's side of my family includes several who have done exceptionally well with cancer, too, and the oncs I have mentioned this to agree that we probably carry something genetic that helps us control cancer cells, but does nothing to prevent cancer. I do always seem to get very wordy! LOL And my spell check has stopped working automatically so I have probably misspelled several words here! Spelling has never been easy for me.
Hi
Yes I eat very healthy always have ironically .
I started having fresh fruit with fresh ginger , and almond milk has a breakfast smothy, ginger I did read is good 🙄xx
I get wordy too! Don’t worry about it because your words are always valuable! I agree that a well rounded diet is our friend! My doctor also said to ignore most of the advice I was getting and eat fruits, vegetables, protein, decent carbs. He knew I wasn’t a junk food eater!
Thank you for your wonderful substantiv reply. You put this in a good perspective. My brother gets all over me about diet and I always ate pretty healthfully but I could eat more healthfully sometimes. But I really believe it is the pills that are keeping my cancer in check and it was interesting that you made the distinction that your cancer could not be prevented perhaps but it can be kept in check. I think I am right on that same page, you expressed it very well.
I would like to thank you for your words of wisdom. I for one always second guess what's going on and never go to the er. I will go from now on or call my onc thanks again shelley
appreciate the reiteration, to all, with regard to our health and well being being priority.
Thank you! 15years! Amazing!
Thank you so much xx
Thank you for reminding us to treat ourselves the way we treat our loved ones. Also for me that's the hardest thing to do. But you are so right❤️
This is such good advice. I think many of us don't like to bother people but you are so right, it's better to have a false alarm rather than miss something important.
I remember an incident when I was I being treated for primary breast cancer and receiving TAC intravenous chemo every 3 weeks. On one of the middle weekends between treatments I was feeling so well that I'd agreed to go away for the weekend with some friends. I woke up on the Friday morning, the day we were leaving, with a very slight sore throat and a low temperature and not feeling quite right which I put down to excitement about the weekend. But something made me call the hospital. I thought I could pick up some antibiotics on my way. They did bloods and my neutrophils were 0.01, I was immediately admitted and spent the weekend in isolation on intravenous antibiotics, the nurse pointed out that if I had gone away and picked up an infection with virtually no immune system it could have killed me. I felt a fraud being in hospital because I felt so well but it taught me a valuable lesson about listening to the little signals and taking heed.
Wow! I'm so glad you called before going away for the weekend! we really have to listen to our bodies, don't we! And sometimes what seems really little is actually really huge! Cancer sure changes things for us.
Think it just proves what you said about not waiting to see how things develop when things aren't quite right 
It's good to be reminded of it. I think so many of us look well that those around us forget that our health is delicate and it means that we have to make sure we look after ourselves.
It sure would have spared me alot of anxiety if I'd had a clue that I'd still be here this many years later! Wish I could share whatever it is that has given me this much time!
Where to next?
Mastectomy or Not?
Ibrance, letrozole when to take?
When your oncologist says. "Right side of skull has the most intense uptake"...
