How are people with liver mets doing?
Comments
-
JFL..I am pulling for you and praying for you still!!
0 -
Before I introduce myself (I don’t think I have introduced myself in this forum) I want to say how much I admire everyone for your strength and camaraderie.
I was diagnosed in August with liver mets with no past or present evidence of cancer in my breasts. Last week I had my first scan since diagnosis. The results are in my patient portal but I have not looked at them. My partner does not want me to because we might not understand or misinterpret the information. I have an appointment on Monday to see my MO. Do you wait to see the doctor or look at scan results online before if available?
I hope everyone who is waiting for results has good news. I will say a prayer for all of us.
Denise
0 -
I often will look at my results and then go to Mo with a list of questions. It is scary seeing things I don’t understand but I can’t wait if the information is in my portal. It can be very helpful to have questions before your appointment because during I know I forget to ask things. Sending you {{{hugs}}} and just know there are people on here to talk to and help you understand some of the stuff in reports
0 -
Hi D37, I like to see my scan results prior to MO visit, so I'm ready with questions to ask. What does this part mean? I don't think I could wait. Fingers crossed for good results.
0 -
D37- Welcome. I guess you had a liver biopsy to confirm Metastatic Breast Cancer since not seen in breast?
I used to look at my scans before seeing the doc. I would go to the Medical Records Department and sign for them because they would not flow to the patient portal until I saw the doc. My old MO would say "I guess you know the scan results already" and shake his head. Yep. My body, my life. Now, I am going to another cancer center and their protocol is the results do not flow to portal for 7 days for the reason that it gives time for the doc to call. I cannot go to the Medical Records Dept now because I travel to the new cancer center-- 2 hours one way.
It is really up to you on if you want to look or not. I liked to know so I could have my questions ready for my appointment.
Keep reading here and post anytime.
0 -
D37 welcome and sorry you have mets
I can't see them in portal bc my doctor doesn't release them to there until she talks to me....
PS: Ladies tomorrow is the day...... I need you all with me!!!
PSS: My mom is in the hospital...severely dehydrated and possible mild C-Diff..
Alot on this plate right now...I am just praying that the Father has mercy ...in that we are just praying for no NEW METS...even If I still have the same one and they grew...just nothing new RIGHT NOW
. Love you all
0 -
JFL WOW so much to absorb, much less do, in your post. Just wondering, can we borrow your DH if we need help? Lol just kidding. They are draining the fluid once a week? That alone is time-consuming. Glad you pushed for spironalactone. I just know that being with the GI doc and kidney specialist will help you get the attention your case needs. Thanks for taking the time to update us.
Nicole, I won't forget you tomorrow, me Tuesday. Scanxiety shared.
D37. You have a rare diagnosis. I always read my reports when they come up on my portal. Here's the deal.....don't be fooled....reports are NOT that hard to understand. Sure, they have different terminology than we normally use but you don't have to be a doc to read them. When you see the word "Impression" on the report, that will be a short summary of what the radiologist saw on your scan. Start with that.
Please know that there are many of us here living years with liver mets. I'm four years out. Come here for encouragement and personal experience. These ladies have certainly helped me.💞
0 -
D37--I was dx at the end of Aug too but I had Stage 1 back in 2016 but as much as I knew it COULD happen, i would have never thought it would. Then they told me it probably spread before I even had the lumpectomy so I've possibly have had this in my body for 4 yearsI I can't imagine what you are going through never having breast cancer and getting this news. What is the scan you had? Have you had a mammogram/Pet scan to find the primary cancer?
Honestly, my husband and I were in such shock we could only take news in small does for the first 6 weeks. I would ask myself if I even wanted to know how bad it was because it wouldn't change the fact I was on Xeloda. So go at your own pace but don't let fear of anything stop you from being an advocate of your own health. The ladies here brought up a good point, there are always questions. 2 months later I'm STILL writing down questions that I go over with my MO every 2 weeks. So maybe take a look and make some notes. In my experience, things sound worse on the report than when the dr explains them to me. She'll show me the scan and answer questions with me. I only get the write up in my portal, not the actual scan so it's good to ask to see it if you haven't.
On another note, I still haven't gotten my brain MRI back from last week, praying they don't find anything. I also get my abdominal scan tomorrow-with Barium and contrast. Can someone remind me, is it feet first?
0 -
Pamela23 --
Good luck on the brain scan results. Hope you hear back soon.
No, your scan of your abdomen is NOT feet first. Your head goes in first. Your feet probably won't even go in, so just be ready to go in head first. A couple of hints: 1) if you think the breath holds conveyed over the system will be hard, then ask for them to do it manually -- you can have that discussion before they put you in the machine. 2) if your facility will play music for you over the machine, and if that will relax you, you should do that. Decide ahead of time what kind of music you want -- classical, rock, a particular artist, etc. It helps me to relax some.
Good luck.
0 -
Nicole,
Best of luck tomorrow. Hang in there.We are all with you.
So sorry about your Mom. Didn't you say that she's around 80? I wouldn't be surprised if she was dehydrated -- I found that as my parents aged, they always thought they had taken in more liquid than they had in a given day. And if she has D besides, that could also be affecting it. Hope for a quick release for her after they fill her up with fluids.
Grannax,
In your pocket on Tuesday as always. Hope you get a good report!
D37,
Sorry to have to welcome you here, but you'll gain lots of knowledge from these wonderful folks. I agree with Grannax -- I'd read the reports before going in, and yes, focus on the section called "Impressions" -- it's usually at the beginning or the end of the report. That will give you the gist of what's in the report, usually in relatively plain language. Do not hesitate to ask you doc about anything that you don't understand -- this is very much a learning process.
0 -
Nicole, Grannax, Pamela--- In your pocket for your scans. Praying for the best news for you all.
Leftfootforward- Didn't you have CT last week? Results?
Moth- You had scans last week too? Results?
I am glad we are here for each other. I pray for you all, all the time. Group hug.
0 -
I agree with Bev about focusing on the “Impressions" section of a scan report. Some radiologists are very detailed and mention everything. Often my report will have little things that are not terribly important and are not even seen the next time. I have ceased to let these alarm me. The Impressions gives you the main points, what is most important.
People have different preferences about whether they want to first get their results from their doctor, or read the report ahead of time. And people also differ in how much they are willing or able to fight for something. I want to read my reports ahead of time, and I have to say that if my doctor tried to withhold them from me, I WOULD NOT STAND FOR IT! I mean I would go to the department head, the patient advocate, the hospital director — whatever was necessary. This secretiveness smacks of the paternalism so prevalent in the medical world. Ohh, it might worry me; ohh, I might not understand. Get over yourself, doc, I have cancer — you can't scare me, and I have learned a thing or two and I am capable of learning more. As these reports are paid for by MY insurance, are about MY body, and help direct MY treatment, there should be no justification needed, but I will give two reasons it is important to me to get them before my appointment: I need time to digest them and formulate any questions, since the appointment is my best opportunity to get answers and discuss. And, waiting for results is very stressful, way more stressful than waiting for Q&A or discussion. So send me the darn report. I promise not to bug you with queries before my assigned appointment time.
P.S. If they claim giving you your report in a timely manner is technically impossible with their internet portal, you can remind them that it is not physically impossible for a nurse or someone to fax them or send them via secure email. You can call or email that person when your scan is done with a friendly reminder. (Again, this is how I operate. Others may see things differently.)
0 -
JFL, thank you for posting your update. Oh, portal vein thrombosis, because you didn't have enough to deal with! Incredible, but actually not unbelievable, that you have had to fight for the ultrasound, fight to see the specialists, fight to get the drug you need. You must be so tired. (If you, with all your resources, have to work this hard to get the right attention, what happens to the average patient?!) This is one of those turbulent, uncertain times. I sympathize; I have been there. So have others, and come out of it back to reasonably good health. But these are the times when we need to stay on top of things or at least appoint someone to do so. Here's hoping everything will become clearer and the drug will be very effective (and approved), and you can get some rest. Sending love and hugs.
P.S. Rising alkaline phosphatase was the first sign of my bile duct stricture. For the bile duct issue I was sent to the liver/biliary specialist who is a surgical oncologist. He reviewed years of scans in great detail and weighed in with his theories and advice. I met with him a couple times. He and my onc, in her words, “talked about me behind my back” a lot, along with the endoscopy guru who fixed the problem, and the interventional radiologist who considered what he might do. It did take this village. They don’t all sit on the same tumor board as my onc is on the breast team, and they are on the gastroenterology team. But they communicated.
Hello and welcome to D37 and Pamela, who are new to the thread. I post less these days, but I have been here since 2015.
0 -
JFL, Wow! You are a great advocate for yourself! You inspire me when I worry I might not have it in me to do it when I need to. I hope the new treatment works for you and the insurance company gets off their wallet.
Nicole, Grannax, Pamela - Good thoughts for upcoming scans
D37, Welcome, and sorry you have to be here. I also was diagnosed de novo with liver mets (via liver biopsy) in June. I had no indication of breast involvement until my initial PET/CT. The following mmg and breast u/s confirmed –I think it was because they knew they were looking for something.
Regarding the scan results – My scan results don't get loaded to a portal, but my MO schedules follow-up appointments 2-3 days after the scan, so I don't have to wait too long. I don't think I could/would wait to look if the scan results were available to me – for me – the waiting is the worst, and I like to read, research, and re-read the report It's a lot to take in, especially in the very beginning, so only YOU can say whether you think it would benefit you.
0 -
Dear JFL, it is so nice to hear from you. It is incredible you are still able to do all the advocating. I never wish people bad but... these insurance deniers... if they only knew what you and MBC people go through... Dear Nicole, holding my fists for your scan results! Saulius
0 -
JFL, it makes my blood boil reading how hard you have to fight just to get the meds you need. Folks don't understand that much of what makes cancer unbearable and a full time job is that you have to become your own advocate and practically have the equivalent of a medical degree's worth of knowledge and lingo to be able to push through the bureaucracy.
My Olaparib costs 5000 dollars a month and I get it for nothing. I would be ruined if I had to fund a single month.
Sending hopes that the insurance company will come through!
0 -
Also waiting for scan results. I typically wait a month to six weeks--it's almost inhuman!. Hope to know 5 november. It really is my last hope although I may be able to convince the Y90 doctor to treat me. She won't treat me as long as I am on the parp inhibitor because there are no studies of the Y90 treatment together with olaparib. To me it's a no brainer--go in with a 1-2 punch!
Trying to get authorized as a patient advocate for the san antonio conference due to my work with DES Action. Fingers crossed!/AMY
0 -
Amy, is that a normal wait time for scan results in your Healthcare system or is it back log do to covid-19? Either way, yikes!
I'll keep my fingers crossed that you get to come to San Antonio! Although I'm a Houston native and have lived here my whole life, San Antonio is hands-down my favorite Texas City.
Best wishes, Katty
0 -
OK Im back...
I AM RESPONDING TO TREATMENT!!!!!!! MY GOSH I AM SOBBING JUST SAYING THOSE WORDS HERE FOR THE FIRST TIME IN OVER A YEAR and HALF!!!!
All the tumors in liver have shrunk the biggest (and oldest one) went from 4.0 to 2.6!!! The next when from 2.0 x 1.2 cm to 1.5 x 1.0cm but then the newest but smallest almost looks like it grew (which makes me nervous but she is not concerned) bc it went from 1.1. x 0.9cm went to 1.2cm x 1.0 then they said about that : "not significant changed" .....but that makes me think the cancer is mutating (since that is the newest one and it grew)....
Anyway..I meet with the IR Thursday to discuss the Y90. MY MO said IF the IR gets the 3 tumors via Y90...that would mean essentially that my liver is NED...she feels comfortable giving Endocrine Therapy another try. I am just praying the IR can get a big enough sample for Tempus of that newest (smallest) tumor.
Thank you all for all your prayers ...I am hoping I can ride this for more than 1 month (unlike Ibrance, Letrozole Faslodex)
0 -
such great news NicoleRod!!!!!!!!!!!
0 -
Yay, Nicole!!!
0 -
Woohoo, Nicole. I know you have had a rough time with your treatments not lasting too long. But now that this treatment is showing promise, shrinkage, then why do Y90 right now? With Y90 do you stop other treatments beforehand? I do not know enough about Y90. Would your insurance pay for Y90 if you can show improvement on systemic treatment?
I pray you have found The treatment for you.
Hugs.
0 -
Nicole, Fabulous news on the shrinking mets!! Enjoy the feeling. 😊👍😊. I’m enjoying the relief for you too
0 -
Candy I have no idea about insurance paying for it ...but my MO didn't seem to think its an issue... The reason why is this could stop at any moment just like Ibrance...It worked for 3 months and stopped at month 4...so we want to get these things gone (or I do anyway) and we do need a biopsy of this new one since I failed 3 treatments in a year. Plus if she gets all 3 that would put my liver at NED...and then we could stop chemo and try endocrine therapy again ...which does tend to work better for bone mets and would give my body a chemo break at a time when things are not out of control with regards to tumor burden.
0 -
Nicole- Sounds like a plan. Let us know what you find out on Thursday.
0 -
Nicole, what great news!!!
JFL - sorry to hear things have been rough. So many things to keep on top of. You're like superwoman dealing with it all.candy, I don't get my results till Wed. Ugh. In the past I've had the scans on Monday, except for 1 time they booked it on Sunday. This time it was Friday and I'm going to balk if they do that again. A whole 2 extra days of waiting is too much. I've been way too anxious. arollson - what the hell? Why do you need to wait that long? That is a crazy long delay. I'd be furious at having to wait that long. My imaging stuff doesn't come up online (just bloodwork) so while I can get hard copies from the clinic, I just wait to get my results. I don't worry about reading them & if they were online I'd definitely read them....
hugs everyone
0 -
Not a Lady of the Liver, but I pop in from time to time to keep informed of everyone. Nicole - SO glad a treatment looks to be working for you! I really hope that Y90 can clean up the rest for the time being. As for the one that grew, let's just call it a "rounding error" shall we?
0 -
FANTASTIC news Nicole! Yay!!!! Let’s see what they say about the y90. Sometimes if systemic therapy is working really well, they let it go a little longer. There is always some slight “Margin of error” in the readings, esp with different readers, so that one tumormay really be no change. Breathe deeply and rest in God.
0 -
yes Sondra yes!!!
lolThanks HOPEAnd Grat!!!!!
Oh I forgot to mention that MO said if we do go back to endocrine therapy we will probably add in a SERD and she is also looking at a trial for that.
0 -
Ok hivehow would you feel about this report? my oncologist releases it to my chart without discussing it with me which makes me think she’s not so worried about it. But it doesn’t sound great to me.
0
