Progresssion and well-meaning advice

AmyJM · May 2019

Well, after having mets only in the bones for 6 years, my scans from last week showed a few spots in my right lung that weren't there on the last scan that I had this past December. I always knew this day would come eventually, when I could no longer say - well, at least it's just in the bones. I still have to have a lung biopsy, but my onc seems to think it is the cancer, and to be honest, there isn't anything else going on right now to account for it, and my tumor marker numbers have been steadily going up for awhile now. They were between 80-90 for awhile and then went up to 100 in December. The December scans didn't show progression at that point. Since then, the monthly numbers have been: 105, 110, 111, 119 - and last week it was 132.

I expected to be devastated when it spread to an organ, and actually, I'm not. I have been very lucky to have six years before it got to this point, and have a really good support system. I'm just taking it one day at a time. The plan at this point is a lung biopsy, then maybe a trial study, if my particular cancer cells match what one of the trial meds is targeting. I am anxious though, not knowing what my new tx plan will be and what my near future will be like - this being in limbo part is hard. And, if it has moved on to the lungs, that is a major progression that I'm still coming to grips with.

I have been getting so much support from so many people, but there are also a few well-meaning friends - one in particular, that feel the need to share the "miracle cure" - different supplements/ diets/ etc. One friend in particular keeps sending me information - holy basil, mushrooms, etc - especially mushrooms! While I'm not ruling out complementary treatments, right now I just want to get through each day and see where things stand, And to tell you the truth, if I were to do a study, I'm not sure they'd want me trying a lot of other new things at the same time anyway.

Anyway, I'm not sure if I'm asking for advice as to how to deal with that, or just solidarity- someone else who gets it to commiserate with - maybe a little of both. I also wanted to share about the progression with my BCO family.

Thank you all for being there - love to all,

Amy

AmyJM · May 2019

I just noticed there's an extra s in progression, in the subject line! Ah well - I really can spell! I must have held it down too long or something!

ABeautifulSunset · May 2019

Amy, I am so similar. I had four years bone only (nice place to be) followed by one small liver met, quickly eradicated for close to two more years. Now dealing with full blown liver Mets. Not that I am ready to go anywhere, but eight years (so far) is nothing on balk at, considering.

Ive been blessed to see both of my kids become adults (although recent) . Yes, I would like to see more. You know, it is what it is. Just keep pushing forward. You never know.

My point only is...... I'm here too. I get it.

Sunset

AmyJM · May 2019

Sunset,

Thank you for your response. We do have a pretty similar situation. My kids are grown too (two boys - 27 and 31) and I've been lucky enough to have one grandson too. We have both been lucky to have so many years so far - let's hope there's many more ahead too though. Like you said, you never know. But, I so agree that it is what it is. That, and "one day at a time" are what I live by these days. Again, thanks for responding, and for being there. : ) Keeping you in my prayers.

Amy

MountainMia · May 2019

Amy, I truly wish you the best! As to your unsolicited advice, there are lots of things to say, depending on situation.

"Thanks for your kind thoughts." "That's an interesting idea!" "I'm confident in the path I'm choosing." "How's your new granddaughter?"

And of course, with email you can always just hit Delete.

AmyJM · May 2019

Mia,

Thanks for your good wishes. As for the suggestions, good thoughts, all! I've also tried - "I'll look into that" and "I'll run it by my doctor sometime." Both may be a little too encouraging! I also think I've mentioned though, that if I do a trial, they might not want me to try new things right now. At this point, I'm just kind of ignoring the many messages she's sent, but she's someone I get together with pretty often, so I may need to say something to her about it sometime. Anyway, thanks for weighing in!

Amy

DivineMrsM · May 2019

Amy, didnt even notice the extra s till you mentioned it!

I am dealing with the first progression, after being stable eight years. And eight years still wasn't long enough for me! I wanted 15! At least! Yes, I got to see my son go from high school graduate to college graduate and beyond, but, hell, I want many more years! The progression was to an area of the spine and a few spots on the ribs. So remains bone only but I'm still experiencing daily sadness because of it. I think I'd really convinced myself I was kicking this shit because I was having a good response to treatment. Now I'm on Ibrance and Aromasin and wondering how long the combo will be effective. And I'm back to being scared, whereas for a long time, the fear was minimized.

Well, I can understand your frustration with those well meaning people. Their type irritate me, too. Everyone thinks the internet has the answers to all things medical and that reading a few articles makes them friggin medical experts.

Your post contains some good words on what to tell these well meaners, or what to text or email them. As you put it: “While I'm not ruling out complementary treatments, right now I just want to get through each day and see where things stand, And to tell you the truth, if I were to do a study, I'm not sure they'd want me trying a lot of other new things at the same time anyway."

I would also say some things like: I fully trust my medical oncologist who knows my case history and has x (fill in the blank) numbers of years experience treating women with breast cancer. I believe in scientific, evidence-based medicine.

One of my sisters-in-law once sent me a link to a video series about some mumbo jumbo cure yourself of cancer stuff. I wrote back and let her know I appreciated her concern but I'd heard of the videos (not created by medical personnel) and thanks but I wasn't interested in viewing them. I told her I did practice complimentary medicine, telling her of the supplements I take, efforts to eliminate stress, improved diet, ect.. I mentioned several books I'd read, written by doctors, that discussed very positive ways to think outside the box in dealing with this disease but always in addition to conventional medicine. I also made sure to mention that I was having a good response to treatment.

And don’t be afraid to stand your ground. If someone tries to get too pushy with me about new fangled ways to treat bc, I have no problem putting them in their place.

AmyJM · May 2019

DevineMrsM,

Thanks for your response! So sorry to hear about your progression. It's easy to get comfortable with being stable, and then progression really brings reality back again! I've tried to have realistic expectations all along, but it's still hard to hear progression. It must have been even harder for you, with no change in so long. I had mets in my bones only for six years, before it spread beyond - and got almost 3 out of Ibrance/Faslodex, so it could work for quite awhile for you. I'm not sure how Aromasin compares to Faslodex, but mine was a pretty easy regimen, so hopefully, yours will be too. I'm hoping for many more years for both of us!

Thanks for your thoughts/commiseration on the "helpful" advice front. You're right that I could even address it the way I put it in my post. You had some good ideas of how to address it too! I will probably have to do that at some point. I'm glad I'm not the only one that that rubs the wrong way! It's easy for someone who cares about you to want to find the magic fix, but it isn't that easy.

Take care and hang in there. Remember - one day at a time. You'll be in my thoughts and prayers!

Amy

vlnrph · May 2019

This brings to mind the conversation I had when still working as a pharmacist: a customer insisted on purchasing a product we did not normally stock, being a small shop inside a retirement community. It was promoted as having been invented by a teacher for treatment of the common cold.

I merely had to point out that, if it were as effective as advertised, it would be prescribed for all of our nursing home patients whenever they got the sniffles! The response was a priceless open mouth incredulous gape as the realization took hold. Same principle applies to use of evidence based therapies for any chronic disease...

Another good one is the popular idea that 'sugar feeds cancer'. Go ahead and eat fewer carbs but your body will continue to break down your fruits/vegetables into the glucose it needs to function. My attempt to explain that concept to someone whose science education was woefully inadequate fell on deaf ears.

DivineMrsM · May 2019

The thing that gets me with these well meaning individuals is that none of them have ever approached the subject of complimentary treatment by first asking me “What are your thoughts on complimentary treatment? If I may ask, do you do anything in addition to the conventional treatment route?" Since the answer would be yes, then they should say, “oh, how interesting! Please, I'd like to hear more about your approach if you care to share." And then, I would explain about books I've read, how I belong to a breast cancer forum and am in touch with many others dealing with mbc, how we exchange information, insight and ideas, what kind of diet and exercise I find helps and some other ways I've made adjustments in my life.

And then, after listening to what I have to say on the topic, only then would it be appropriate to say something like, “would you mind if I passed along some information about a complimentary approach you may have not come across yet?” And I would say something like, “well, sure, that’d be nice of you. I could check it out and see what I think.”

But no. No one ever seems to ask whether I am open to these complimentary ways. They just assume, apparently, that I live under a rock, never heard of the internet, am a quivering scaredy cat who only listens to the oncologist's instructions and that I’mjust too plain dumb to look in to complimentary treatments on my own, as if I never heard of the concept of dealing with mbc in a wholistic way. They just push their (well meaning?) agenda my way, perhaps hoping to be the superhero who solves my dilemna. Hello! I'm the one dealing with it for Pete's sake. I've got a much better handle on things than they do!

pajim · May 2019

Amy, DivineMrsM, I've been there. Somehow you think that first progression is never going to happen. BOOM! And once again you have to realize that it's hard to stop this disease forever.

I actually thought I'd be devastated when I had to start iv chemo, but this year it went smoothly. Maybe because I had so long to get used to it. . .

I have no advice re: the well-meaning. I have a friend sending me videos of meditation that is supposed to cure cancer. I just say thank you. She's unhappy that I'm sick and just wants to help. If she got pushy I'd have to take steps.

Here's hoping that your next treatment lasts as long as your first.

Pam

ShetlandPony · May 2019

Amy, you said, “It's easy for someone who cares about you to want to find the magic fix, but it isn't that easy.“ That sounds like a good thing to tell your friend. As others have said above, you can assure your friend that you are well-informed and do consider complimentary approaches. If you need to, you could ask, “Have you heard that stress is bad for cancer patients?” (She will say yes, no doubt.) And go on to explain that all these messages and advice are adding to your stress, and that she could really help you de-stress by allowing the two of you to share non-cancer things instead of discussing treatment.

I’m hopeful for you, Amy. I think it is encouraging that you had many years before mets, and you had a long run on previous therapy. But Sisters, I hear you. It’s never long enough on a treatment, and we of course want more years — a normal life span! The darn unpredictability of our situation makes me dizzy.

Nkb · May 2019

Amy- advice makes the person feel like they are doing something. They dispense the advice and feel like they helped you and they are done with needing to help you. This advice actually often makes people who were happy and confident in their treatment unhappy and scared or having to defend themselves. I have no better responses than the ones you already know-

My friend just told me her good friend has lung cancer. She is not a smoker, but, is ashamed of the dx since people assumed you smoked. I told her 1.) don’t give any advice unless she asks for it 2.) offer real help like I will take you to chemo, I will call you regularly to check in, I will make dinner etc.not call me if you need anything 3.) ask do you want to tell me about your scan. Not what did you scan show. 4.) do you want to tell me your cancer story. So many people don’t want to hear it - and people usually want to tell it to someone.

Good luck with your next treatment- progression is truly scary hoping for a miracle around the corner.

DivineMrsM · May 2019

You all make very good points on this topic.

Depending on who it is, I may even get snarky the next time someone pushes some unconventional cancer treatment my way. I might say something like, “Is there an erectile dysfunction awareness month? Do you think we should ask the men in our group if they suffer from it, and are they willing to forgo the Viagra and just try to cure their impotence problem with cottage cheese and baking soda? Because, you know, Big Pharma. They are getting rich off the little blue pill. Billions. This problem could be solved with the right diet and exercise. I’m sure mushrooms could help.”

The use of Viagra for ED was discovered by accident. It was given on a trial basis to group of men to determine if it helped with hypertension. After the trial, which had dismal results for hypertension treatment, there was a discussion with the group of men, and the question was asked if they noticed any kind of differences while taking the drug. One man mentioned that he got more erections. And the other men chimed in and said, yep, same thing for me. And when the administrators of the drug asked for any leftovermedicine back, some of the men refused! They wanted their little blue pills! They weren’t giving up their erections! They wanted better sex lives! No, they were not giving up their Viagra!

And what I want is LIFE! I’m not going to slam Big Pharma or turn my back on conventional medicine which is extending my life. I want to tell these well meaning people, “Back off! Go try to cure some other disease with your baking soda and cottage cheese and mushrooms!”

vlnrph · May 2019

Very interesting discussion. I do think that people who give such unwelcome advice are doing it out of their own sense of fear that they not experience the same things. They want to reassure themselves that these events will not happen to anyone else so put out these ridiculous ideas as a type of (weak) defense mechanism...

kber · May 2019

If I'm in a cranky mood, I've found a response that stops people in their tracks. "Oh, is that what you did when you had [insert situation or diagnosis]?"

Generally shuts the conversation down quick. Of course, I don't use it all the time or with people who really know / love me and are just trying to help. But some days it's all I have.

Progresssion and well-meaning advice

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