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Searching for treatment options

myAZmountain
Posts: 270
Joined: Apr 2018

Has anyone been to one of The Cancer Centers of America for treatment? Desperate to find somewhere that doesn't think I am a hopeless case--even though I only have 2 tiny mets in Right lung I have been pretty much told to measure for a casket. Primaryl tumor in cecum/ascending colon and Omentum were removed in March, absolutely no sign of reoccurance in abdomen--just 2 mets in lung that have shrunk by half (now .5 and 1.0) and some nodule in left that have  not grown or reduced --leaving them to think they are benign. Got second opinion at Mayo and the guy basically said I was hopeless and my only choice was chemo for life. .  My heart tells me that I could have lung resected--Can't undertand why I have been told by quite a few doctors that my only choice is chemo, that I am not a surgical candidate because there "might" be cancer cells in left lung too tiny to see on scan--well then again there might NOT be too doctors!. Have to find someone somewhere that thinks I have a chance. any recommendations? I am 3 1/2 hours Northwest of Phoenix. 

mountainhiker
Posts: 54
Joined: Aug 2018

My suggestion is to get to MSK in NYC as soon as you can.  They got me to NED after being told by several other oncologists that my only option was chemo for life and that would only last at most 2 years.  They will also usually work with local oncologists for mopup chemo so you don't have to go back to NY after surgery or other treatment.

I do know of a young lady at work who had what I believe was ovarian cancer that had spread to numerous places in her body (other female places, kidneys, and another place I can't remember).  She ended up at the Chicago location of Cancer Treatment Centers of America and had a couple surgeries.  I wish I could tell you more, but she hasn't been back to work for at least 6 months and the person who updates me on how she's doing really isn't the best at gathering relevent information.  However, she is still alive which I never would have thought was possible the last time I saw her before she headed out there.

mountainhiker

myAZmountain
Posts: 270
Joined: Apr 2018

I have noticed from reading on this board MSK seems to be the most successful and most aggessive . Do you think it is possible to do a consult by phone if I send them all of the relevant scans (the actual disks)? 

mountainhiker
Posts: 54
Joined: Aug 2018

My oncologist is Dr. Nancy Kemeny - she's the expert for people like me with only liver mets.  I have heard of her accepting people with limited lung mets, but I don't think she does it regularly. But if you can get her, do it.  If not, you probably can't go wrong with any oncologist there - I just don't have any experience with them.  Check out their website.  

If you're serious about going there and have specific questions about the particulars (like places to stay, travel in the city, etc), I'll be happy to provide you any info you need.  I may be a countryboy that doesn't like crowds, but I've become quite an expert over the past 18 months at navigating that city.

mountainhiker

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

we were told lifetime of chemo as well and they did surgery. call the referral line and talk to them and see what they can do, not sure about the phone but it’s worth a try

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm having a stupid day today. What's MSK?

I have 4 tumours in my left lung, two of which are bigger than yours. I was told I wasn't a candidate for surgery and had a low chance of even surviving the surgery. So I am on chemo for life. But nobody has said that my life will be that short. At this point I know there isn't a reccurrence of cancer in my abdomen and my liver is okay. So why would I have a longer expected life than you? It doesn't make sense to me.

They're just guessing anyway. They really have no idea. My onc said I had 8 to 10 years a couple of years ago. Then, earlier this year she said I might have even longer than she'd thought because my tumours were so slow growing, The truth is that they can ramp up and grow quickly all of a sudden so she really doesn't know.

I refuse to live like my time is short. It can be short for anyone. You just can't live that way. I think it's irresponsible for a doctor to tell you you had two years. You'll prove him wrong, I'm sure.

Jan

myAZmountain
Posts: 270
Joined: Apr 2018

Appreciate kind words from a fighter like yourself! MSK= Memorial Sloan Kettering. Yeah the Mayo doc told me to only make plans One year at a time, not 20-30! Really harshed my mellow lol. My plan is to march into his office in 20 years and tell him what I think . I just don't get the rationale that you have to plan treatment on the supposition that there "could" be small cancer cells that are undetectable-I mean everyone runs that risk if you ask me.  I do think they are very slow growing--There was no growth from having 2 months off from chemo from infected port so I am taking that as a good sign. I did have new port last week put in left side (much harder for the doc to do for some reason) and it hurts like heck. I feel like I can feel the catherer in my throat UGH. At least he did not use dissovable stitches this time--maybe it will last more than 6 weeks! Hugs to you JanJan!!

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Several or many  hospitals, MSK, MDA if necessary, should handle two small lung mets.  If push comes to shove, German hospitals are the most advanced for lung mets with their Rolle laser technique, up to 100 mets in a lung.   However if you have a 2nd organ or site, then you need an advanced multimodal plan, e.g. surgery-chemo-surgery etc.  Multimodal is more difficult to arrange and might need to coordinate more doctors or consultants.

Don't panic, drs always seem to send you home empty handed "to die" when they  don't offer something, especially if its not offered in their hospital.   It means ask around, and keep looking.   Been there done that, both on DIY multimodal treatment and some extremely negative interviews for my wife.

MDA  MD Anderson

MSK  Memorial Sloan Kettering

 

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Have you asked the oncologists WHY they think you aren't resectable?  More important, have you been evaluated by one or more thoracic surgeons?  Oncs are not surgeons and shouldn't be telling you that something is not resectable.

It is possible that the oncs think that because of the removed tumor in the Omentum, removal of lung nodules might not save the situation??  If so, don't let them make life decisions for you.  If a surgeon is willing to resect the lung mets, absent a real reason not to do so, then I would go for it.  Maybe you'll still need to be on chemo fo a while, but I think it is way better to get rid of a known met than to worry about some other recurrence.  Besides (having had it), VATS removal of a lung met is easy-peasy surgery.

 

Good luck,

Betsy

Stage 4 - diagnosed 5/05 - NED

myAZmountain
Posts: 270
Joined: Apr 2018

Both have told me that since there MAY be tumors to small to be detected on CT scan in Left lung it would not be advantageous to resect the KNOWN tumors in Right lower lobe. Oncologist at the first hospital I got treatment in because it was an emergency had wanted me to get them resected--was planning on meeting with lung surgeon to discuss, but has a high resolution CT scan here in AZ and nodules in left lung were deemed cancer (all 3,4,5 mm) by the IR.  SO far none of those nodules have definitely been shown to be malignant but it seems like once they have labeled you it is hard to escape it--Second opinion at Mayo was dismissive and discouraging. I do think they look at the omental mass (It was hanging by a stalk and completely encapsulated, the surgeon who removed cecal mass also got it down to clean margins) and decide I have a very poor prognosis even though nothing has shown up in 6 months anywhere except the 2 tumors in Right lung. My CEA is 2.7, up slightly from 1.7 but I think its from the Chemo. I have no other health issues and do not take any medication. I am getting hypertension, neuropathy and liver inflammation from the FolFox and would love to stop chemo and do surgery. Going to find another facility that doesn't think I am a lost cause no matter what. I never dreamed that along with the stress of having Stage 4 cancer you have to be faced with the incredible stress of finding the right practitioner as well. 

 

mountainhiker
Posts: 54
Joined: Aug 2018

It really shouldn't be like this, but unfortunately it is.  There are doctors who simply go through the motions and collect a paycheck, then there are the doctors who live to learn everything about the diseases they treat and do everything in their power to help people.  I'm not passing judgment on anyone - just telling it like I see it.

Once you have that doctor in your corner who will do anything to try to rid your body of cancer, the anxiety is replaced by peace, confidence and the passion to fight.  I remember hearing of a patient of Dr. Kemeny who was asked by another person in the medical field who their oncologist was and when the patient told them Dr. Kemeny the other medical person said "I've heard of her.  She'll never give up on you."  That's the type of doctor you need.

mountainhiker 

k8's picture
k8
Posts: 29
Joined: Oct 2018

A little nervous reaching out like this. My husband aged 62 recently had colonoscopy due to rectal bleeding. Results from colonoscopy were negatvie for cancer but they did find a tumor. Referred to surgeon for furhter follow up. Surgeon performed another colonoscopy and took tissue our of center of tumor which tested positive for cancer. T4 N3. Surgeon then told us he has seen this many times and that this type of cancer and where it is located can sometimes go through the rectal wall and usually travels to liver and lungs.

First course of action: radiation for 6 weeks to shrink tumor, wait additional 2 months, surgery to remove tumor (might have ostomy bag temporarily till wound is healed from surgery)

We were told cancer spread to liver. Change of plans for treatment. Port put in for chemo and radition at same time. Went for MRI on liver day before port was put in. MRI done on a Thursday, surgery for port done on Friday. Following Monday went for first chemo treatment. Blood was drawn, needle was inserted to begin first treatment, doctor just explained chemo drugs that would be injected to begin treating liver and my husband would be having to surgeries instead of just one. I asked the doctor if he can see things on my husbands chart that we cannot see because I did not see results from MRI done on his liver from last Thursday. He said well let me check. He reviewed record for MRI and said to us "Have you seen these results? and of course I said no that's why I am asking. He said this changes everything because the results of the MRI showed my husband does not have cancer in his liver therefore treatment plan changed. MY GOD, ARE YOU KIDDING ME. Instead went to radiologist to have tatoos put in 3 places to begin radition. However still has chemo bags delivering treatment 24 hours a day and radiation Monday thru Friday. No side effects yet. We don't talk about what's going on. But I find strength reading on this site what is yet to come. Doctor says if no side effects by 2nd week probably won't have them. We will wait and see.

 

 

mountainhiker
Posts: 54
Joined: Aug 2018

If I knew you weren't serious, I'd swear this was a Three Stooges skit.  To start treatment without even understanding the extent of the disease is unacceptable.  I'd be looking for a new oncologist.

mountainhiker

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

 Doctor says if no side effects by 2nd week probably won't have them. We will wait and see.

I'm glad you finished of with 'We will wait and see'.  There is little more disheartening, than being surprised, when four weeks out, side effects hit you. 

I hope radiation goes well for hubby. It can be a bear, or it can be a kitten. Chances are, he WILL have some side effects, even if they are mild - I hate to use the word mild. I would have loved to have had 'mild' side effects. 

Welcome to the forum.  Here is the link to the forum home page, where you can post your very own thread, and that way we can answer you there, and not here on someone elses thread.  https://csn.cancer.org/forum/128

Tru

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

I had colon resection in early 2015, 6 months of chemo. (My initial surgery in 2015 had heavy lymph node involvement, over half, so there was a good chance it was out and about elsewhere) There was one suspect spot the whole time.  A year later in 2016 it was clear it was a met and they did a wedge resection on my lung. 

Was clear for a year, then multiple mets in lungs and also lymph nodes.  Lymph nodes are inoperable due to location and due to the number of mets in lungs surgery not an option.  Also have tumor in my back and spine which I have radiaiton going on.  When I am done, back on chemo.  The reason they did not operate on lungs now was because (a) the feeling the lung mets were extensive [and they have gone nuts in the last 8 weeks], (b) the lymph nodes, (c) not wanting to put me through uneeded surgery at this time.  I had asked about ablation earlier this year when going into drug trial.  The intervential radiologist said he would once things are under control, but right now no (and lung mets were not as advanced.)

Basically back on chemo and see how it goes knocking things down.  If I respond as I did before, things could get knocked out enough to do surgery if anything left.  The caveats are (a) sometimes coming off a chemo makes it ineffective down the road, (b) sometimes chemo become ineffective during treatment and need to try something else.  If it is knocked out I may come off for another drug trial if I am up for the risk.  Or perhaps bide enough time.  I was told in general assume chemo works for a year, though many people can go longer on it.  At no point, even now, with countless mets in my lungs, numerous inoperable lymph nodes in my body and a 6cm tumor in my back going into my spine that I am a desperate case on close to "checking out."  I have asked and I trust my oncologist and other docs.  She has made it clear it is time to get back on chemo, she has been monitoring as long as she felt it was not getting too close where damage,etc. can happen.  

So maybe get ablation and then watch as see what else crops up?  Two resections?  There very well may be other spots that crop up down the road for you.  Maybe there is something else they are seeing or basing the decision on.  My lung resection was "easy" in and out in 36 hours.  I made sure to start walking and running a month before or so to build capacity up.  And I ran three miles a week later.  (I hate running and never ran since I was a kid.)  

Each person is different.  And if you can buy a year or two with somewhat easier surgery before chemo is needed, it may be something to consider.  Especially if targeted ablation/radiation.  Each day we are around is another day further break throughs are happening.  I just have too many spots to handle in my lungs right now, but the lymph nodes add more to me in terms of some of the other options like the Doctors in germany that T mentioned.

 

steveja
Posts: 41
Joined: Apr 2017

I'm not saying anything bad about CTCA treatment, but you may want to tke their claims with a grain of salt

https://en.wikipedia.org/wiki/Cancer_Treatment_Centers_of_America#Controversy

I'm not a fan of US News rankings methology, but any in the top 10 here are great, top 5 preferred.

https://health.usnews.com/best-hospitals/rankings/cancer

myAZmountain
Posts: 270
Joined: Apr 2018

I went to the #11 ranked hospital (Mayo Phoenix)  for second opinion and the arrogant young oncologist essentially told me to measure for my casket. My primary treatment hospital is rural but the Radiology dept. are  all docs from #3 ranked hospital (Mayo Rochester)--They are good but limited in what they offer, and tend to rely on well established standards of care treating everyone the same. But today I had chemo and the gentlemen across from was getting immunotherapy!! He had colon with lung mets, same as me. He was on his 3rd treatment--took about 90 minutes--and he said his resutls were fantastic and he felt great! So WTH?  Wonder what the criteria are for getting immunotherapy--it is defintiely the future IMO. This treatment journey is one of the most frustrating aspects of Cancer. I got copies of all my scans--logistically Johns Hopkins would be my best bet as I have daughters that within 2 hrs driving distance. K8 so so sorry for all of the misdiagnoses and rollercoaster you have been put thru--just so frustrating!! Hope everything works out soon!

abita's picture
abita
Posts: 647
Joined: Dec 2017

I am absolutely not sure, but I think you have to be tested for mutations in your cancer. And that the immunotherapy has to be one for your mutation. At least I think that is why they are doing mutation testing for me. I can't be sure. It was a whirlwind day for me that appt day.

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

There are some mutations in CRC which lend themselves more/less to various immunotherapy trials and front line drugs.  (Some trials look for certain mutations or non-mutations) There are also certain things that trials are looking for in terms of qualifying for the trials - health, type of cancer, where it spread, what regular treatments, etc.  Also make sure that the doctors and the rest know you are interested in trials.

I was able to get into a trial, though it was not clear how effective it would be.  The thing I had going for me I was healthy enough for a risk and I refused chemo.  I wanted to explore options.  I washed out of the trial and have nothing else at this time, so going back on chemo.  

The NIH  has database of trials 

https://www.cancer.gov/about-cancer/treatment/clinical-trials

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

So sorry. I have had 4 thoracotmies at Stanford as mets kept appearing. That is now over 10 years ago. Sometimes setting up appt with surgeon as well as oncologist can be good as surgeon can say I can get them and onc will perhaps defer to surgeon.

Chip

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