Those with liver mets (after in my ca... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

6,809 membersβ€’8,426 posts

Those with liver mets (after in my case lungs and spine)

kearnan profile image
kearnan
β€’42 Replies

I do not really care for my onco but since it was determined that the breast cancer is in my liver as of Feb. 23 and then in June 23 it doubled in size.

But I notice she makes me lay down and kind of taps on my stomach? (I think it said distended gallbladder or something on the report).

I didn't even care to ask her bc I am trying my best to hold in my rage that she didn't change the treatment I was on when they found the 5.1, and waited three months on the same treatment and then next 3 month scan shows 11.1.

I see her again this Thursday after my bloodwork. Anybody know why they tap on the stomach? I am trying hard to remain calm for Thursday bc I am really angry with her but I also realized that due to Covid, they lost alot of staff (not death wise but meaning they left rather than get vaccinated) so I think all the workers there are overly stressed.

Just wondering........

Written by
kearnan profile image
kearnan
To view profiles and participate in discussions please or .
42 Replies
β€’
kokopelli2017 profile image
kokopelli2017

hi kearnan. tapping your belly is called 'percussion'. it is another way to assess the health...or not....of your organs. she is probably tapping on your liver. she can tell how hollow or thick it sounds.....which can help diagnose issues. or maybe she was tapping on your gallbladder too....same premise. just my two cents....not an expert.

so sorry you are going through all this. I can understand your anger.

sending hugs....

caroleπŸ’›

AutumnLove profile image
AutumnLoveβ€’ in reply tokokopelli2017

You are very knowledgeable KoKo..I never knew basis behind the tapping either! Ty😊

kokopelli2017 profile image
kokopelli2017β€’ in reply toAutumnLove

Yw AutumnLove. similar to tapping on a wall to locate the studsπŸ˜‰

kearnan profile image
kearnanβ€’ in reply tokokopelli2017

I never knew that and, quite honestly, I thought she just did to show me that she was doing a checkup. I did not even ask why bc I was already so angry.

Well, I go back tomorrow for my bloodwork to check if the new meds are keeping the cancer from my liver. I was a 5.1 in February 2022, she did not change my treatment, and the next scan showed it was an 11.1 (I think that got her attention.)

I am going to ask her tomorrow. I am already angered at her from our last visit where I waited for an hour to see her, ONLY for the pa to tell me that she said to me "my numbers were rising, do not worry, see you in two week." I was furious and said to him, I can't even clearly hear what you are saying with the mask on and why are you coming to tell me after an hour wait in the reception area.

I said no, you bring me into an empty office. She is going to hear about that. (And I had an appt. to see her).

kearnan profile image
kearnanβ€’ in reply tokokopelli2017

They cannot see it on the scan? If they saw the cancer, I would think that they could see if it was hollow or thick? Interesting. I remember seeing something on the scan report about my gallbladder being distended, so maybe it was that. I was too busy to read that part bc all I could see is that the breast cancer in my liver had doubled in size 3 months. And the radiology doctor had typed up SIGNIFICANTLY INCREASED on his report (Red flag alert, red flag). All caps and bolded (I guess that means serious LOL)

I am now on tamoxifen and afinitor. (I hated changing treatment bc I had 3 1/2 years on it and at the lowest dosage and felt fairly okay.

I read that markers from the bloodwork are used and she said they just give a general idea of if these new meds are slowing down the growth although the real story will be when I have my next scan in September.

So far six weeks, and numbers are increasing she said. I was told that markers sometimes rise bc of other various scenarios. I think if it shows this again that the numbers are rising, I do not want to wait until September.

kokopelli2017 profile image
kokopelli2017β€’ in reply tokearnan

hi kearnan. I would not give too much credence to her performing percussion on your abdomen. maybe she partly did it for show. of course CT Scans are more reliable. was just answering your question is all.

carole XO

kearnan profile image
kearnanβ€’ in reply tokokopelli2017

Well I found out about a week and a half ago that it was not ONE tumor that started in my liver and doubled. I had been under that belief for since February. I had two tumors that both doubled in size and a "baby" tumor. I was shocked and all I kept saying was How did I not know it was two tumors there? That seems much worse that there are two and even with the new meds, they both doubled in size.

Now, she is moving my CT scan up 45 days. From the bloodwork, it appears that she is aware that the new meds are not working so now my scan is August 23rd.

I would bet my last dollar it is going to show that both tumors are growing and the "baby" tumor also. I had referred to it as THE tumor and she never corrected me. Somehow having two tumors that both grew double between scans seems worse than having one that doubled.

USIrishcolleen profile image
USIrishcolleen

kearnan,

She was palpitating, and doctors know what a healthy organ palpitation sounds like and what an unhealthy palpitation sounds like.

kokopelli2017 profile image
kokopelli2017β€’ in reply toUSIrishcolleen

hi.

percussion and palpation not the same. both are assessment tools but only percussion involves tapping.......article below:

How to perform percussion of the abdomen

Written by Olutayo A. Sogunro, DO

Edited by Shelley Jacobs, PhD

Reviewed by Franz Wiesbauer, MD MPH

Last update - 5th Feb 2021

Percussion is an important portion of the abdominal exam. It consists of tapping on the body wall and eliciting a sound that has different pitches for different structures. The changes in pitch differ depending upon the organ being percussed.

Tapping during percussion can also cause the movement of fluid. This motion caused by percussion can help to assess the presence of fluid in the abdomen.

How to percuss the abdomen

As mentioned previously, percussion elicits sounds that have different pitches across various structuresβ€”making distinct sounds. In the abdomen, the predominant sounds are either tympany or dullness.

Tympany is typically heard over air-filled structures such as the small intestine and the large intestine. Dullness is typically heard over fluid or solid organs such as the liver or spleen, which can be used to determine the margins of the liver and spleen. This can help with estimating the size of these organs and can help to identify organomegaly (i.e., enlarged organs).

What abdominal organs should you percuss?

The liver

Start over the right midclavicular line to percuss the liver. The midclavicular line is an imaginary line that exists bilaterally on the patient’s abdomen. It starts in the center of the clavicle and runs medially through the nipple.

To find the upper border of the liver, percuss along the right midclavicular line starting from around the third intercostal space down towards the right costal margin (i.e., the lower edge of the rib cage). The normal upper border of the liver should be around the fifth intercostal space. To locate the lower border of the liver, percuss along the right midclavicular line from below the umbilicus upwards to the right costal margin. The normal lower border of the liver should be at the right costal margin.

-------------------------------------------------

I cut the article here.......it goes on to explain how to percuss different organs of the abdomen.

kearnan profile image
kearnanβ€’ in reply tokokopelli2017

Thank you. That was very kind of you to do. I think I just ended a long post to you OR anybody that has liver mets? I do not know what is going on. It sounds like she thinks the tumor are continuing to grow, something they look for in the bloodwork, enzyme levels or whatever. Is it a bad idea to get a second opinion. I love my palliative care doctor. I am just so angry with her i reference to her how come you did not change my 3 year treatment when you saw the first tumor in feb. Then in June when they continued to grow rapidly per the scan, she stops my 3 years treatment and puts me on Tamifoxen and afinitor. She never pushed up a scan a month earlier. I feel like these cancers cells on my liver are not insolent but are all growing rapidly.

kokopelli2017 profile image
kokopelli2017β€’ in reply tokearnan

hi kearnan. just sent you a PM.carole XO

kearnan profile image
kearnanβ€’ in reply tokokopelli2017

Funny thing. I am so disgusted and have no faith in my onco that I can barely look at her. I wanted to say some things but this time she had a scribe with her. But I said to her, why do you tap my stomach and then I said is it about percussion. She seemed surprised and said yes. I said it is sad that I have to go to a forum board to get questions asked bc I feel like you never tell me the full story. I also know she is overloaded with cancer patients (since Covid alot of medical centers are short-staffed) and that I am now in back of the line bc of the advanced cancer in my case. So thank you for giving me more information than my onco does. I appreciate it.

kokopelli2017 profile image
kokopelli2017β€’ in reply tokearnan

thanks kearnan. good that you surprised your onc with your 'percussion' knowledge...lol. but not good that you can't get your questions answered by her😠. I sent you a PM via Chat regarding 2nd opinion and more. did you read it? curious?carole XO

Hazelgreen profile image
Hazelgreen

Please check your bloodwork for the measures of liver enzymes: ALP, AST, ALT, Bilirubin, Albumin, and GGT. If they are all in the normal range, this may suggest that your liver is functioning well despite the mets. Perhaps your oncologist is worried about what treatment might do to your liver and'or your other organs....

kearnan profile image
kearnanβ€’ in reply toHazelgreen

From the beginning (4 years ago), she said they never use tumor markers, no oncologist there did because they do not always reflect a decrease or increase). Now, she is looking for (I think she said liver enzyme ?) and that for the past past weeks or a bit more, the "numbers" keep increasing which I guess suggests to her that the meds are not working.

So now she is rushing me to have a CT SCAN bc obviously it is the only way to see if they are spreading. She said I would need to have it a month early and I am glad (but worried that she mentioned it) bc I will be furious if I am taking these meds and the cancer is still spreading.

I seriously want to find an onco for a second opinion. But I am getting tired alot, no appetite, and I want a second opinion from another cancer center to see if they have other options.

I am so done with her. She got very defensive when I asked why was my treatment continued even after it spread to the liver and now possibly, the new tumors would not have grown.

This is hard bc I am totally 100% alone. No friends live in Brooklyn (and they have jobs, and grandchildren whatever. Now, I am stressing bc I want everything out of my apt. I went through my savings (my bad but I had thought I would be dead now) and I have no one to do it.

I think (and usually I do not think the worse) that it is still spreading. I was just so angry that I had no knowledge it was THREE tumors, not one.

I can't afford to travel out of state for sure and I am wondering if anybody has a recommendation in NYC area.

I came home upset bc I do not know what options, if any, would work. I should and want to get a second opinion. Sorry for the length. I really do not care about how much time I have left but it is hard when alone to try and plan for your own demise. I am on registrar list at Columbia medical in NYC. If I do not have jaundice or die from an infection, they will take me (no charge) and then in 3 years they do some kind of cremation and memorial service.

I am overwhelmed by all I have to do and do it by myself.

8576 profile image
8576

Why not ask her why she is doing it? She is the one to give answers. Although the answers you got here make sense. Don't let your anger take over. I know it is difficult to control emotions however, you might be satisfied with the answers. And then if not get a second opinion. I can understand the stress you are under. We all suffer from this but finding answers is the best or if possible change doctors.

Cheers, June S.

kearnan profile image
kearnanβ€’ in reply to8576

I did ask her why when the b. cancer spread to my liver, why didn't she change my medication then? She extremely defensive and just stared rambling on so I felt she knew it was wrong for her to do that.

So I stayed on verzenio and falsodex injections for a bit over three years. No, even knowing it went to a different organ, she made me continue my regular treatment and then the scans in June proved that they had grown significantly.

I think she is aware that these meds are not working (bc she does not trust markers.) This will show if they are growing or stable, but I think she already knows the meds are not working.

I really would have gone off on her but she had a scribe with her who has a laptop around her neck and inputs DR. b and her patients. I think it is overwhelming for all medical facilities c many people left.

I am wondering about meds that I can suggest to her. I feel like now with me, I am back at the end of the line.

Now, I have to call funeral parlors for direct cremations in case Columbia cannot take my body as a body donor. It is very stressful to try and plan your own demise.

PJBinMI profile image
PJBinMI

I'm a long timer with MBC (18 years +) and though I have not had liver mets, my first onc, a very wise older woman with a great reputation, was never quick to change my meds. With liver mets, liver function is really important to monitor, probably more important than the measured size. Measuring tumors via scans is not going to be exact. We are not in exactly the same position, and most scans take their pictures in "slices". Think about slicing a hard boiled egg. The egg is not the same diameter and each slice will be a bit different in size. And if you could slice the same egg twice, it's unlikely that you would cut in precisely the same places so you would get different measurements each time. Does that make sense? If we have done well with a treatment, a bit of progression doesn't always call for an immediate change in meds. If my oncs had changed treatment every time cancer looked larger on scans, I would have run out of options way before now, and as things are now, I'm only on third line treatment. Of course we all have our own unique bunch of cancer cells and with highly aggressive cancer, treatment can need to be changed right away with signs of progression. The blood work can be just as important and some times even more important than the changed size of tumors, in making treatment decisions. How our body is functioning is often a bigger clue about how we are doing than the pictures that are taken with scans. Does that make sense? But I agree with others that talking with you onc, asking "why" she has recommended things can help you understand more about cancer and your treatment. Living with this nasty rotten cancer is stressful and scary! Asking questions doesn't have to mean we are challenging our doctors, but that we want to understand more to help us cope! I hope you will do well cancer wise and every other way too! Sending love and support.............................

kearnan profile image
kearnanβ€’ in reply toPJBinMI

A bit difference in what you posted and what I meant to say. Maybe I did not explain it. I have been on verzenio 50 mg. and falsodex injections for a 3 year and a half years. Everything stayed stable. Then in November, she tells me they have specks on my liver but were not sure it was cancer. ( I think we both know it was). Fine, so I get my next CT scan (meanwhile all this time I thought it was one tumor on my liver.) No, in February there were two tumors, one was 3.1mm and the other one was 5.1mm and now a baby tumor. So in June, the first tumor went up to 5.1 and the 5.1 tumor grew to 11.1 (even in the report they had it capped and bolded, SIGNIFICANT INCREASE.

So it is not about if your cancer in the places you have had it (it is also in my lungs and spine) but now it went to another organ.

Once it spreads to another organ, that means the treatment is no longer working. It was not that my lung or spine tumors grew, but it spread to a different organ.

that is when from all I read is when they change the meds.

Threadsgirl profile image
Threadsgirl

It seems to me from what you say that your doctor is at best overworked and/or burned out and at the worst pretty uncaring about how a change like this affects her patients. I would need to know what specific numbers are going up and what they mean for you, and what is going to happen if they keep going up. And at least some more support than β€œdon’t worry.” Being blown off at this time is bad and I get your anger. I would try to find some way to release some of that anger before you go to see her, or take someone with you if you can. Anger clouds the whole interaction and limits communication, I have been there. Then if you are not satisfied, you could seek a second opinion. I have known a lot of people, not just MBC patients and including my husband that find themselves with a doctor that just takes on too many patients and then has trouble keeping up with them all, can’t understand this but it seems to be more common, especially now. Maybe the drs think they are helping as many people as they can but don’t realize they aren’t doing it so well. My husbands very busy dr before he switched told him he was becoming a diabetic when his blood sugar was 2 points above normal, didn’t seem to remember his history, just looking at numbers. He had eaten a sugar donut before they did his blood work, but the doctor didn’t give him any opportunity to tell him that, very rushed. If he had put him on medication it could have killed him. He just changed doctors, didn’t even say anything just never went back, and this doctor is so much better in many ways, subject of diabetes has never come up (and his sugar has been normal since). You are important and you deserve to have your questions answered in an unhurried way, try to be firm but not aggressive, if communication doesn’t change there should be other options. I wish you the best, keep us posted.

kearnan profile image
kearnanβ€’ in reply toThreadsgirl

No, I have been going by myself since diagnosis. I am not married, no kids, no siblings, etc. Many friends dropped by the wayside so I am always alone. Most got married and moved out of state. But I think you are 100% correct that in many medical centers they are short-staffed. I really want a second opinion and I do not know even where to start. I am angry and devastated. Meanwhile somehow, I have to find another doctor and start getting rid of stuff. I live in a coop building as a sub-tent for over 28 years). So they have all these strict rules about moving.

The couple I had hoped live in FL. Retired, no children but in good health. Then her husband made a remark and I was so done. My friend has a very controlling husband. I guess she is okay with that, but I know no matter what I ask them to do (I am leaving her my $7,000 life insurance policy, but now I longer want to bc in the end, whatever Mike decides they will do.) Then she mentioned that they may not be able to come and clean out what is left for 1-2 weeks after my death. I do not have anybody else to ask. I may clean out what I can but not much with this spine, and then call Junk removal or whatever and now I have to find somebody else and put them on my life insurance.

I am more stressed that I am doing this alone. I would love when it came time to be in hospice in my own bed, but the nurse only stays for four hours and then I would be alone the rest of the time. I am so much more stressed about these things then death itself.

Debbigbang profile image
Debbigbang

When it goes into the liver it's tricky. Meds like ibrance, fulvestrant and others are supposed to be the meds for mbc. Unfortunately these did not do anything for my liver. With every med my liver tumor kept growing. Fortunately my onocologyst put me on capecitabine. Later month CT scan showed it working. I have another CT scan next month. I am sure this is the drug that will heal the lesions.

As for tapping your belly, not sure. I know when I had some back pain, ended up pulled muscle, she tapped on my spine.

Mention that drug to your onocologyst, hope you fine the right meds, they are out there πŸ₯°πŸ₯°.

Deb β€πŸ™

POPS60 profile image
POPS60β€’ in reply toDebbigbang

Hi, I have come off Palbo and letrozole since April due to Liver mets progression. I am interested in you being put straight on capacetebine as when I asked about it my oncologist has recommended Paxlitaxel intravenously weekly for 18 weeks. Was this discussed at all with you? As I am wondering if the capecetabine is more expensive so they are avoiding costs..?Really hope it works for you ad it does seem to have alot of positive feedback.πŸ™

Debbigbang profile image
Debbigbangβ€’ in reply toPOPS60

Hi

I am on xeloda( capacetebine) with letrozole. I have been on letrozole since the day I was diagnosed with mbc a yr and so ago. So far so good πŸ™.

Deb

Iwasborntodothis profile image
Iwasborntodothisβ€’ in reply toPOPS60

I was on Capcetibine/Xeloda for a year with good result I think it is much less expensive than IV chemo. I am now on IV taxol - both have worked well. Taxol has brought my CA15 down from over 800 to 67. (Not a typo) I have several posts on both. I haven't had a scan since January so I don't know if my liver mets have visually decreased but nothing else has brought my numbers this close to "normal" in three years of treatment.

POPS60 profile image
POPS60β€’ in reply toIwasborntodothis

Thankyou so much for this response, it has given me some real encouragement....which I really needed.Will you be having scans soon? Or is your fantastic reduction in tumour marker mean no need. Such good news with your marker numbers, do you feel OK in your general health too.?

kearnan profile image
kearnanβ€’ in reply toIwasborntodothis

If you do not mind bc I really have no idea. I have a 3.1m tumor and an 11.1mm and a "baby" tumor. That baby tumor is going to grew. I just know it. I am mentally and physically exhausted and even trying to clean the bathroom took me four hours I do not eat much bc I have no appetite. I try to eat fiber bc of the opiods I am now.

Will another oncologist from a different hospital be willing to take a patient that now is quite advanced? I have no faith in her at all.

kearnan profile image
kearnanβ€’ in reply toIwasborntodothis

I have had CT scans every three months like clockwork for the past four years. This CT scan I am having in August is actually 45 days earlier than scheduled bc my onco believes the liver tumors are treatment resistant and the new meds are not doing anything. Just curious, how come you do not have scans in such a long period of time?

kearnan profile image
kearnanβ€’ in reply toPOPS60

The afinitor I am taking now (and looks like it may not be working) is $15,500 for 28 pills. Not even a full month. Can you imagine?

kearnan profile image
kearnanβ€’ in reply toPOPS60

Well the afinitor I am on costs $15,500 a month. Because I joined a pooled trust fund (medicaid spend-down), I have both Medicare (bc on SSDI for more than two years) and full NYC medicaid. Medicaid has to approve it. It is a blessing bc I have no copays and whatever Medicare does not cover, Medicaid does. At the time I was lucky bc Covid had not yet hit and the social worker and nurse coordinator and a volunteer cancer attorney did all the paperwork for me to get into the pooled trust.

NYC Medicaid actually even pays Medicare for the monthly $170 (or whatever the cost is now) in addition to the RX plan which was going to be $50 a month so that is not even taken out of my SSDI. I also get (I do not drive and have nobody) free car service to and from every doctors appt., not just cancer related.

I am blessed and grateful to have it. I have my next scan (45 days early) on August 23 at which time I expect to hear the liver tumors are continuing to grow.

kearnan profile image
kearnanβ€’ in reply toDebbigbang

I am making a note of this medication and whatever else I can find from someone who now has or had livers to the mets. I told her that I get more information from this board than her. I thought I had one tumor, and now it is three. Thanks for the name of the medication bc I am sure the scan is going to show continued growth in my liver.

kearnan profile image
kearnanβ€’ in reply toDebbigbang

I will. I asked her why does she tap on my stomach while I breathe in and out and she said by certain sounds, she wants to check something on the liver. I have no patience bc I feel she dropped the ball on this one. And I have no faith in her anymore at all.

TammyCross profile image
TammyCross

Kearnan, I don't know liver mets, and they seem to be unique among mets in regard to treatment, but I don't like the sound of this at all. What kind of scan did you have? Maybe my oncologist is wrong (she is supposed to be a hot shot), but when I have progression, she changes the meds. We at least have a serious review of options and reasons for her decisions. That kind of jump in size, along with the concerns raised by blood work (tumor markers? liver function?), is certainly alarming and deserves a real, solid discussion with your oncologist. Can you call or write? Sometimes I can get attention that way when I can't at the office. It just sounds like a brush off when you need explanation and inclusion in decisions. Do you have a second opinion person? (I have to look up where you are.)

kearnan profile image
kearnanβ€’ in reply toTammyCross

I saw her today. I am in NYC (Brooklyn but I can take the cars into Manhattan also) and I have dual coverage of Medicare and full Medicaid bc I joined a pool trust fund with the help of the cancer attorney when I started going there. They take a chunk of my SSDI money on the 15th of every month (called a spenddown). So now I qualify for Medicaid after they approved it.

CDR (Center for Disability Rights) mails my rent automatically to my LL and I then scan my one credit cared bill and Verizon bill and they pay that out of the money in SSDI.

I am grateful bc I get free car service to and from any drs. appts, even a dentist. It is a blessing bc I do not drive and there is nobody in Brooklyn to drive me and it like $22 each way. Because I have dual coverage Medicaid actually pays to Medicare the $170 a month, plus my rx plan which is another $40.00. So I am blessed bc I have no copays at all. After Covid, I found many more doctors now take patients with dual coverage.

kearnan profile image
kearnan

I just logged on today at 12:30 am (EST). I bloodwork and then an appt. with my onco. Unfortunately, she had a scribe with her (who "takes" notes to give Dr. B (and other oncos) help in that area so she can see other patients on a timely manner.

I am bewildered and angry I was under the impression since June (the bc mets were first seen in February 2022.) She did not change the treatment . My next scan showed SIGNIFICANT INCREASE . So I saw that the 5.1mm increased to 11.1 mm.

No, (and I get a copy of the ct scan report usually in 24/48 hours later put on the portal so the patient can see it before they meet their onco. I always have meeting with her two days after my CT scan.

Well, I find out today that there are 3 tumors on my liver. I was under the belief since June that it was ONE tumor growing. I did not know that there are two and what she called a "baby met" One was 3.1 mm and another was 5.1mm (in February 202), Then in June (me thinking it was one tumor) finds this out today and the 5.1mm increased to 11.1mm and the "baby one."

Well now that sounds a bit more serious. I was scheduled to go in two weeks for more blood work. Now she has cancelled that and I have a CT scan for August 25th (60 days since my last scan so a month early.)

I suspect (I have been dealing with her for four years) that today's bloodwork showed or suggested that these meds are not working. So now I have a CT scan in August and I would bet all I have that all three of these tumors are continuing to spread. The CT is the only way to find out.

Is this normal for anyone with mets to the liver? I was upset and said How did I think it was one tumor? I said I remember our last appt. and I referred to it as one and you never corrected me. How do I not know this? (I think I said it four times.)

Please, if anybody had it spread to the liver, tell me if the above is really bad and what treatment options were offered. I am getting to the end of my journey I believe, but I have no faith in her at all.

If anyone could let me know what types of mets they have and do they have more than one tumor. I am upset and angry.

Debbigbang profile image
Debbigbangβ€’ in reply tokearnan

I am thinking can you look for another onocologyst? If your confidence is gone and you no longer feel she is a partner in your health can you switch.

I know meds can take a few cycles to kick it. This is why I get CT scans every 2 mths.

My onocologyst has a team of other onocologysts and they all meet every week. I love this because more heads are better than one. I love my team !! She kept trying all the normal meds for mbc, but organs are a beast on their own.

Because my liver kept growing and quickly I may add 3 to 8 is frightening in an 8 mth time frame. So when tumor dropped 2 needless to say she was so excited with me. If you don't have that in your onocologyst I wouldn't feel they are doing enough for me.

Note: liver tumor and other organs are scary, but I will tell you, when you find that treatment, because as you know mbc is a very individual cancer, tumors melt like butter. At least I found that in my case. My scans are next month and feel more healing is on my liver.

Keep on them !!! Never think for a minute you are not in control !!

Deb πŸ™

TammyCross profile image
TammyCross

I looked you up and remembered Brooklyn and the great coverage you have with Medicare and Medicaid.

Please can you get a 2nd opinion? I went to Sloan Kettering recently for a 2nd opinion and it was covered by Medicare 100%. I didn't learn anything new, and I can't say she was warmer and more encouraging than my usual uncommunicative oncologist, but she confirmed that she would do pretty much what my oncologist is doing. She was impatient explaining why my last Rx failed, but at least she explained it.

I keep feeling this is not right, the way you are being treated. In any case, your concerns and worries are not being addressed as they should be, and you are not getting the info you need to understand what the oncologist is doing. -- When I went for a 2nd opinion, I noticed that NYC has two of the top ten breast cancer treatment centers in the US, and I was not going to one of them. The two are MSK and Mt. Sinai. How about Mt. Sinai? They seem to have a lot going on, new approaches. At least for peace of mind -- which this onc is not giving you.

kearnan profile image
kearnanβ€’ in reply toTammyCross

I may try Mt. Sinai. I was under the impression bc I believe like a year ago or a bit longer that I read that Sloan Kettering does not accept patients with Medicare or NYC Medicaid (only Medicare if they pay for one of those advantage plans to go along with Medicare). I do not have that. I have Medicare and just NYC Medicaid which they would not accept in NYC but will at their Rochester location which I cannot get to.

I guess I could try Mt. Sinai. Maybe I waited too long to get a second opinion but I will call and see.

TammyCross profile image
TammyCrossβ€’ in reply tokearnan

I started a reply but hit a wrong button and it disappeared. This may be a repeat if that reply is out there somewhere and decides to come back.

You are talking as though you are switching oncologists. I think you are just getting a second opinion. Traditional Medicare covered 100% of my second opinion at MSK. IF you find out that your oncologist has been off, doing the wrong thing, then you can think about switching, look into insurance, who is taking new patients, etc. -- You seem to be finding ways to talk yourself out of doing anything, as in, who would take you on if you are in the final stages. All speculation.

It is not too late!

As for final arrangements, it is good to figure that out and make plans and leave instructions with someone who can execute them. I have copies of mine all over my apartment and have sent it to friends and relatives.

I learned one thing dealing with my mother's final illness. I put her in home hospice. That took care of many things. Hospice sent me an aide who knew exactly what to do -- how much morphine, when, how to ease her pain, and she knew what calls to make when she died. Maybe you should look around and consider a residential hospice when you are really close -- I don't think you are; you are having a bad moment. Still, it is good to line this up. In fact, I don't have much in the way of family and friends, either, so should take my own advice about going into hospice. I mean, making a plan to do that.

AuntC profile image
AuntC

This is causing you so much stress, which you absolutely don't need, I would not wait any longer to get a second opinion. Since you have Medicade & Medicare it seems you shouldn't have a problem going to Mt. Sinai's. Please, for your own peace of mind make that appt. don't wait. I will keep you in my prayers.Carolyn

kearnan profile image
kearnanβ€’ in reply toAuntC

I feel like for the first time I have nothing left inside. I do not have anyone to talk or who visits, etc. Will a different oncologist really even want to take me on if I am in the final stages? I am thinking I can at least call. I feel completely hopeless for the first time. Most have family and friends to lean on. I do not.

I mean if I am being told the liver tumors are treatment resistant, that the end is sooner than I think. I have to clean out my apt. as much as I can by myself (I am a renter in a coop building). I have to try and find a place that will pick up my body when I pass. I am just empty inside. I do not think there is much to be done at this late stage, and I have so much to take care of (paper wise). It is very hard to be the person who also has to make all the decisions and find out prices so that when I am deceased, there is something in place.

AuntC profile image
AuntC

I wish I were closer so I could help but I'm in So Calif. Maybe it's time to ask for some help from the friends you have, even if they do work or have grandkids. If they're friends, they'll help. I will keep you in my prayers & I'm sure some of the ladies on this site are praying for you too.

Not what you're looking for?

You may also like...

Please those who were given Xeloda for tumors in the liver that keep growing.

The tamoxifen and afinitor I was on for two months has done nothing. I had my CT scan six weeks...
kearnan profile image
β€’

Stage 4 breast cancer, mets to lungs and liver. Adrenal mets possible?

Hello Everyone. πŸ™πŸ™ My mom is 53 years old and she got diagnosed with triple positive metastatic...
Nikita1806 profile image
β€’

How does it start when your stage iv (which has mets to my lungs) start possibly appearing elsewhere???? My onco just called me at home.

Onco just called and this is what she told me. My onco just called to tell me that my CT scan of...
kearnan profile image
β€’

3 months check for my spine cancer today! And Ibrance 75mg

I just got my MRI results today and my metastatic in my spine show not progression and shrink a...
Nmartinez15 profile image
β€’

Liver, lung and spine mets

Getting more and more worried about results of CT and MRI this Tuesday. The result I am most...
BangorBelle56 profile image
β€’