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whuch hospital

linda7408
Posts: 21
Joined: Mar 2018

Hi. I have Stage 4 RECTAL cancer. My oncologist basically said we will keep you comfortable and stay on chemo.

Nothing can be done with lung nodules.  I have narrowed it down to Roswell in Buffalo, Sloan Kettering or MD Anderson

for my 2nd opinion.  Anybody recomment one over the other for rectal mets to lungs?

abita's picture
abita
Posts: 658
Joined: Dec 2017

Some lung lesions can be removed. I suspect they are saying yours are not where they can be removed?

linda7408
Posts: 21
Joined: Mar 2018

Hi Abita. I honestly don't know. The physicians asst said it might spread? I don't see dr. much anymore

Go figure. Thats why I am trying to find out which hospital specializes in this.

abita's picture
abita
Posts: 658
Joined: Dec 2017

Have you had a pet ct scan? That shows you all the spread. I can't help you with which hospital as my spread is to the liver. But it sounds like you definitely need a new oncologist who gives you a better picture.

Twinzma
Posts: 216
Joined: Jan 2018

If you go by the ratings MD Anderson in Houston is first in the nation, while Sloan is second. Each center is different so I would start reasearching by your concern Lung Mets and best way to treat, then find a doctor whom is the most aggressive & experienced by the treatment you want and think can be done.  

 

mountainhiker
Posts: 54
Joined: Aug 2018

My situation was different from yours in that I had colon cancer with spread to the liver.  However, I too heard the chemo only treatment plan from a few local/regional doctors before I made a trip to MSK in NYC.  First meeting with the surgeon at MSK I was told he would be doing a liver resection to remove all mets.  I was so surprised I pushed back a bit and asked how this was possible when I was told by so many other doctors it couldn't be done.  He simply said: "This is what I do.  It won't be a problem at all."  Incredibly confident and caring...a great combination.

If you don't like what you hear from your doctor, keep searching until you find one willing to fight for you.   

mountainhiker

abita's picture
abita
Posts: 658
Joined: Dec 2017

I was "curable" up until my post chemo scan that has spots. My first lesions were 3 large in the left lobe of my liver. Because they were together, my surgeon was able to remove them, hence the curable. I did follow up chemo. My 6 weeks after chemo scan showed 2 spots they thought were scar tissue. Then MRI showed 2 more, so 4 spots, not scar tissue. Getting pet scan next week to see if there are any more spots throughout my abdomen to see where I stand. But the 4 spots are spread out in my liver, which is why I am no longer "curable", too spread out to remove. My question is, do you know if this was why your first oncologist said chemo only? I am curious if MSK can get them all. Honestly, was, and still am, in shock. My oncologist was so wonderful before this, and was so cold when he gave me this news. I am in NYC, adn wondering if I should get a second opinion. I really don't know what to do. I hate waiting for the pet ct scan, but my oncologist went on vacation right after telling me. I can't really get a second opinion before I get the pet ct scan, but at that point, should I just start immediately any treatment before the spots get bigger and even more than however many they find on the pet ct scan. I honestly can't decide what to do.

mountainhiker
Posts: 54
Joined: Aug 2018

The first 3 oncologists I spoke with said "chemo only" - 2 were at a local cancer center and 1 was at a large regional center (some might say it's a national center).  My tumors were spread out over both lobes of the liver.  I did a colon resection (locally), 3 rounds of FOLFOX (locally but at the direction of MSK), liver resection and HAI pump implant (MSK), 11 rounds of FOLFIRI+Vectibix (MSK) and 5 rounds of liver directed chemo via the HAI pump (MSK).  My oncologist is Dr. Nancy Kemeny and my surgeon was Dr. Michael D'Angelica.  I cannot say enough positive things about MSK in NYC.  They are amazing.

mountainhiker

abita's picture
abita
Posts: 658
Joined: Dec 2017

During the liver resection, did they take some of the lesions and the pump was to remove the others? Sorry about so many questions. While replying, I can't go back and see which point you are now out, still in treatment or had a clean of cancer scan. I had 4 folfox before my liver resection, one after, reaction to oxaliplatin, so then 7 rounds of folfiri. Do you have side effects from the pump. Again, sorry for all the questions. I just did what my doctors said before, and aside from voicing worry that what if the irnitecan was not working, I didn't question. I want to have my options thought out when I get the results of my pet ct scan so I can "hopefully" get rid of this and all future "spots" of cancer

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

in my husband’s case he has three lesions, two removed one ablated and an HAI pump implanted. He has had chemo in it twice now, zero side effects. You don’t know  you are getting chemo. Your liver processes it out of your body before it ever goes into your system so that’s why no side effects. He goes to the oncologist every two weeks so twice a month. One time is chemo, one time is saline. You have to keep something in the pump at all times or it will stop working and once you have one you can’t ever get another because of how they put it in.

if your going to go to Sloan for a second call them now it takes a while. You call them, they ask questions, tell you what they need you to send them. Then they call you a few weeks later after going over everything and make you an appointment with who they think is best able to help you. You can just bring the pet scan after. My husband never gets them in their opinion if its new and after cancer it needs to be treated as cancer, unless they can tell it isn’t. Which most can without pet ct

abita's picture
abita
Posts: 658
Joined: Dec 2017

Thank you for the info. Yeah, I called MSK. They said the first appt would be mid Sept. And I want to get started asap.

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

start treatment and still get another opinion from Sloan. September is not that far away, sadly since I don’t want my kids to go back to school. Anyway I hope you get good news.

mountainhiker
Posts: 54
Joined: Aug 2018

All tumors were removed from my liver during the resection.  The HAI pump was used after surgery to kill any remaining cancer cells or mets that were so small as to not be visable on a CT or MRI.  There were absolutely no side effects from the chemo delivered via the pump - I couldn't tell whether the pump was filled with chemo or just saline (that's what they fill it with when it's not being used for chemo).

 

mountainhiker

abita's picture
abita
Posts: 658
Joined: Dec 2017

That sounds like what I should have done. Maybe only Sloan kettering does it. Or maybe for my case, they were worried about cells all over. Do they eventually take the pump out. I wonder why it isn't standard, seems much better than all over chemo.

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

Is mainly only at Sloan 

you will do systemic chemo in addition to pump chemo in most cases. The pump can be removed but since it can not ever be put in again you should think very carefully about removing it. When you are not actively getting chemo in it a gel can be added to it that will last 6 weeks or so.

Kazenmax's picture
Kazenmax
Posts: 361
Joined: Feb 2016

I had lung mets. Found on first yearly CT scan. my CEA was normal.

It so happened that I was scheduled to see my surgeon shortly after my PET scan. He immediately gave me a reference to a top thoracic surgeon. I had 1/3 of my left lung removed. I am doing additional chemo.

My doctor said the goal is still cure. The nodules were small and it was caught early.

Look into thoracic surgery. My surgeon even said if more come, he can remove more and I can still be ok.

good luck

k

linda7408
Posts: 21
Joined: Mar 2018

Kazenmax do you know I started with rectal cancer that spread to lungs. I have never had a PET scan.  Only CAT scan.  I was wondering why a surgeon never came to talk tto me. He says we will talk about it when the time comes.  The nodules can't be seen at the moment but we know that will change. I think I need Sloan Kettering to take a look at my case.

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

There's a lady on anaother forum and she had an 11 mm lung met removed via wedge VATS surgery in Norway. I'm not familiar with this surgery but it seems to have worked well for her.

http://coloncancersupport.colonclub.com/viewtopic.php?t=60356#p478547

There is also this story: https://www.nytimes.com/2016/12/07/health/cancer-immunotherapy.html

and associated clinical trials but you have to have one of two genetic mutations and the right Alleles. It is cool in that it's a non-surgical solution (outside of further mutations) which uses your own immune system to kill only the cancer cells.

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

Depends on the details of your mets (others?), your persistance, and your resources, but it is often *possible* to go steps beyond the standard of care and succeed with uncommon advanced treatments.  If the problem is "only" too many lung mets, the Germans developed a laser and a tecnique to remove up to 100 mets in the lungs.  Mostly in German and a few others sites globally.  If you have some mets in other places, then you'll need those treated and/or removed too.  This would be called mutlimodal treatment.  These are big steps in terms of simply finding surgeons regionally or nationally and others drs willing and able to step beyond "standard", so you can't just expect a magical plan to present itself.

There are several choices to chemo, standard or  off label.  Again, anything beyond standard requires your incisive participation and homework.  Reading for somebody in your household essential.

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

I remember both Ren and Pete heading to Germany. I think Ren died out there and Pete survived quite a few years.

I wish all treatments were universal. 

Tru

Twinzma
Posts: 216
Joined: Jan 2018

Wow, now that would be nice! I have pretty much lost all faith in our healthcare system. Too many doctors are so worried about their records and won't push the boundaries. Maybe they fear that they will be sued, maybe it's just that they want to look good. Whatever it is, it's at the expense of those that suffer the most. If only doctors were like the ones on TV drama shows....Give Me Greys Anatomy DR. Sheppard (McDreamy) Now he never feared the outcome! 

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