Searching for treatment options

myAZmountain said:

Thank you!

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)? 

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

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 said:

Oncologist and Interventional radiologist

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. 

 

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 said:

2nd week in treatment using chemo and radiation for rectal tumor

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.

 

 

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

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.

myAZmountain said:

Thanks Steveja

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!

What Abita Said (Yet Again )

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