Im about 2 years in after diagnosis, mets to the liver and lungs but doing well not having exhausted any meds yet, 25 CA 27-29 tumor marker # (down from 130 in 2019) and successful Y90 procedure on big liver tumor.
Im wondering if anyone understands why doctors are hesitant to chase down and obliterate all tumors and think that we still need meds even if tumors are taken care of with radiation, lasers, etc. If one has a normal tumor marker # and no tumors how can the tumors easily come back? What can kill us besides the med side effects after that?? Maybe im just wishful thinking for an end to these med side effects and this answer is obvious, but id love to hear from anyone with a more comprehensive and communicative onc than me!
Stay in the moment,
♥️Andge
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Ommmmmmm
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I had a similar question when my otherwise under control bone Mets spread to liver—a few spots less than a centimeter. I wanted to do y-90 and zap them so I could go back to being - “stable bone-only gal”. My onc referred me to a radiologist who said he wanted to wait and see if they grew before y-90.
My onc said in the meantime, and even after a y-90, systemic treatment was crucial as “the army was advancing” meaning cancer cells were circulating and looking for their new home. Today the liver, tomorrow who knows?
So perhaps that’s what’s happening on your case. With MBC we can’t be cured, even if the cancer “sleeps” for a time—years even.
I’m sure Sandra or others more medically wise than I am will also weigh in, but this image of a stealth advancing army helped me. (And helps me put up with the annoying Xeloda side effects)
If there is a 4 mm tumor detected on a PET scan, which is about the limit of tumor detectability, I understand—you already have millions and millions of cancer cells in that tiny tumor. If a PET scan looks "clean," that doesn't mean that you don't have cancer anywere; they just can't see it. Once cancer is stage four, we are terminal and not actually curable. We can beat it back and buy time, but unless you can conveniently die ahead of time from something else, cancer is likely to kill us. We need to fight it forever. If there is even one cancer cell alive, it will grow and replicate itself forever because that is what it is programmed to do.
I've read the foregoing replies to your query, and find them more extreme than my thinking.
Many of us who were diagnosed with early breast cancer in the years after menopause had more than a decade free of cancer before being diagnosed with MBC. Clearly, regardless of the number of tiny cancer cells hiding in the corners of our bodies, these cells either needed some other impetus in order to develop significant mass or are very slow-growing indeed.
It is certainly not true that we must be concerned with "even one cancer cell alive". It takes a considerable number of cells to form a mass or a lesion.
The main question for some of us is, "Now that we know the lesions are there, must their poisoning dominate the rest of our lives?" Related questions may be, "Once we attain some measure of control over our lesions, how long will it take for them to regrow?", "How reliable are my tumour markers for me?", "In what other ways can any future lesions be monitored?"
I approach cancer treatments with considerable caution as I'm very concerned about the quality of life I will have in my remaining years. All cancer treatments seem to come with significant side effects, some far worse than others. Beyond the five or so types of breast cancer, rather little is known about individual differences in responses to either breast cancer or its various treatments.
Those of us who respond to this forum find it useful to hear the opinions of those in similar situations. All of us, however, have unique situations. We are the only ones who can decide what is the best way forward for us.
I think your questions were reasonable, Omx7. Best wishes for coming to the right decisions for you,
Ty so much cindy. I appreciate your temperence. I was found to b mbc 7 years after a stage one lumpectomy during which the tumor sac broke inside me 😳 at that time nothing was in the lymph nodes. (No worries, im over it) but i do feel like my body was previously able to well control what i had before and will again. I do try not to catastrophize, but understand these matters are very serious and many want to tell u the good and the bad. I appreciate knowing everything i can know but also take things with a grain of salt as so little is known with suredness in the medical community. So, i thank all who have responded. And i wish everyone peace and calm. What will be will be. ❤️ Andge
I was told that once a tumour has spread beyond original site something is always lurking and waiting for it's moment of triumph. I was advised that I would always be on meds. X
Here is my situation: I have decided to stop treatment due to the extreme side effects of the drugs. I think it is better to have some quality of life now, and then if and when I get progression, to return to treatment. I am an extremely unusual case however, dx de novo in 2018 with only one met that went to brain. Lumpectomy in 2020. E-pos. NO other lesions. I have tried anastrozole with and without Ibrance; fulvestrant with and without Ibrance, then the horribly untolerable Ibrance tablets were given to us--i had to get the capsules back; then letrozole with low dose Ibrance; then letrozole only; then tamoxifen alone. My new onc says they think this drug intolerance is genetic. She gave me the "no drugs" option, and will continue to follow with PET and brain MRI's. I am 75 and just want some QOL!! We all make different decisions. BTW--my radiation oncologist describes the tumor cells in my brain as "seeds" that are waiting to "sprout!" Since I am a gardener--I liked that imagery. Like dandelions. Best to you!
I found your post very intriguing. It is so good that you now have an intelligent oncologist willing to entertain a "no drugs" option while she continues to monitor what is happening in your body! I'm curious about her idea of genetic drug intolerances, and will try to find medical research on this topic.
I gather it was your former oncologist who had you try so many drugs despite your complete lack of lesions. It does seem that you have already gone through quite the range of the usual ones prescribed for the most common of the breast cancers (ER+ HER2-) - Ibrance, anastrozole, fulvestrant, letrozole, tamoxifen. How did your intolerances of all these manifest itself? If you ever do show another lesion, I guess your oncologist will hope that it is one that may be surgically removed or radiated.
We are almost the same age (I'm 76+), and we're on the same page regarding the overarching importance of the quality of our remaining years. I hope to hear more from you.
HI Cindy--Thank you so much for your note of support! This has all been rather scary--including switching to the new clinic. I just met new onc a week ago--and today one of the ca center psychotherapists talked me through my decision to transfer care. The biggest problem on the drugs is that I get like I am drunk--I suppose it is what others call "fatigue"--but I have no energy to do anything! Life was just a waste--like being in a dementia fog the whole time. Extreme cognitive problems--could not think and could not remember. I was dx May 2018 de novo--one brain met and one breast tumor, both 1.6 cm. Started on anastrozole after craniotomy. Two months later after SRS started Ibrance. That onc stopped Ibrance two months later after clear PET. 8 months after starting anas I had such horrible joint pains I stopped it. Pain in knees, shoulder's, trigger fingers and thumbs. It took 6 months for the pains to go away. Lots of brain fog and memory loss. After a break started fulvestrant. That was pretty good. I noticed being tired and "drunk" one week after injection when it peaks in body. Last two weeks of the month were pretty good. Went to a new clinic closer to home. Started Ibrance due to some slight activity on PET. Had lumpectomy 1 yr after starting fulvestrant and almost 2 yrs after dx. Always tired and drugged--so onc thought fulvestrant was the problem. Also had some low back muslces spasm that were near injection site. Started letrozole. After 2 months I blew up at a volunteer job--really scolded this woman! I never acted like that before cancer. Also had some paranoia attacks. I stopped Ibrance. Outbursts kept happening--so onc stopped letrozole. 11 days after stopping letrozole I felt this huge viel lift off my head! It was amazing. Even my fellow volunteers noticed a difference--more present, looked less tired. After a long break the onc talked me into trying tamoxifen. Back into the drug dementia. After an out-of-breath after cardio workout incident I stopped it. It also caused some pretty serious depression--no reason to live; I will just die soon. Have been off drugs now since Oct. and what a difference! Brain is slowly returning, interest in life, feeling like I could maybe even travel again. If any of my experiences can help anyone--or add to a database--I am very willing to share. Is anyone compiling data? I know an article came out in JAMA about the memory loss on the AI's. I think the AI's are worse than the others. I was hoping the new oral SERDS would be better, but my new onc says they cause lots of nausea. The new onc said that if I get progression she will put me on the same "textbook" drugs she would use now --probably back to fulvestrant (low dose if we could bet it approved) and low dose verzenio--since it has some protection for brain. However I am sure it will depend on where mets might show up. She seemed to think that E blockers only do not extend OS but adding verzenio would? Please share any more info you have. Sandra also posted some recent articles. You are an MD, is that right? I have a med tech/clinical lab scientist degree--and worked in university research and developed immuno-diagnostics for companies. If those of us on the patient side can help in any way, I am sure willing! I have Anne Loeser's book--listened to the webinar on The Right Dose, and have emailed with her. Sorry this is so long--but figured I'd share the whole story. I am not very tech savvy or else could have sent you a PM. Such a journey for all of us! Best to you! Kay (Lady Katarina is my name when I go out with tea friends!)
Thanks for your long post. I think I better understand where you are at. I am not a medical doctor; my Ph.D. is in clinical psychology. As a result, I understand the human brain and statistics fairly well so I can piece my way through medical research papers by looking up any terms I need to know.
Psychology teaches an appreciation of individual differences which is one reason why I'm reluctant to follow blindly whatever an oncologist recommends based solely on his/her overgeneralized professional guidelines. I wish physicians were given better research training, but, in general, they are not. Most cannot interpret statistics on their own, and this is critical if one hopes to understand the generalization limits of research studies. O well, it (our situation) is what it is. We do have this forum to exchange experiences and seek the ideas of others. Modern technology has given us this, as well as modern medicines (regardless of their limitations).
Speaking of modern technology, I too am "technologically challenged", but it is fairly simple to send a private message through this site.
As I'm typing my response to you, I see at the very top of the left side of the page, a line of words and symbols beginning with, "My feed", and including "My hub", "Chat" and ending with "Alerts". The "Chat" heading refers to private messages. I'll try to send you one after I sign off here. All you'll have to do is click on that heading, after you go to your profile, and you should see my message. If you want to respond, you'll see the word "Compose" in a blue streak on the right side of the page. You'll be asked to type in "Hazelgreen" for the recipient and then your message.
Thanks Katrina for sharing your decisions. Im sure plenty of people make this choice for more quality of life. Whats thw sense of having more horrible feeling days i say. Besides, we all have to transition due to something. We just happen to know how we will (most likely) go ahead of time. Go with the flow on your journey which is infinite (i believe)! 🙏♥️
Thank you so much for your note of support! It is a scary decision to stop drugs--which I just made a week ago, when I saw the new oncologist for a 2nd opinion. In the past week I have also decided to transfer care to her clinic. So lots has been going on. One can always change one's mind and take drugs! Stopped my lat drug in Oct. and I am amazed at how I can think now and have interest in life! Still physically tired--but so happy! My given name is just "Kay" but when my friends have tea, we dress up with hats and I become Lady Katarina! Well, that was a pre-pandemic life....will it ever return? Best to you!
Hi Ommmmmmmmm, I am curious about your Y90 procedure. My primary cancer is BC and I have stable Mets to my spine and rib cage after 16 mos of Ibrance 125 and Letrozole 2.5 mg. I also have monthly Zometa infusions. Anyways, the one lesion in my liver has doubled in size since January and my docs want to use Y90 to take care of the lesion given I am stable to all other areas and on my first line of treatment. I am a candidate for Y90. The mapping went well. It’s United Healthcare. They are denying Y90 because they do not cover”unproven procedures”. If my primary cancer was liver or colon it would be covered. I am writing to see if you had any issues with insurance? Who was your interventional radiologist and what hospital were you treated at? Of course, we are appealing but any information I can have to support that this is used in breast cancer patients with Mets to their liver would be helpful. Thank you!!
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MBC diagnosed March 2022 and the CA 27-29 tumor marker test.
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