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Confused and seeking advice

Chelsea71
Posts: 1170
Joined: Sep 2012

Hello everyone. I will try and keep this brief. Had an app today at the Ottawa Hospital (where Steve is treated) with a different onc as regular onc was sick. This onc (Dr. Tim Asmis) completed a fellowship at Sloan. Knows and loves Dr. Nancy. Speaks highly of the HAI pump. We updated him as to what has been going on with Steve. Explained that he is doing very well in regards to tolerating the chemo. Met with liver surgeon from the Ottawa Hospital who told us they had nothing to offer. Cancer is too widespread throughout both lobes of liver and there wouldn't be enough healthy liver left after surgery. Same would apply to RFA. (Steve has approx 6 or 7 tumors. Largest is 4 cm). Went on to explain that we went to Montreal and met with Dr Peter Metrakos (McGill Health Care Centre - very reputable) who said he wanted to do a two stage resection (providing there is no progression). He said there would be lots of healthy liver left over. This didn't surprise Dr. Asmis. He agreed that the province of Quebec takes a less conservative approach to cancer treatment compared to Ontario. He also said that if you put three surgeons in a room they would all have different opinions about one situation. He knows Metrakos and said he is aggressive but has a lot of success. What concerns me is that he seemed to suggest that having a big resection may burn bridges down the road. We talked about the HAI pump (which would have to be paid out of pocket. No covered in the states). Dr Asmis said the first year would likey cost 500,000. He thinks it will eventually come to Canada. This would take a long time. I specifically asked do you think a resection is a mistake. He talked about how navigating cancer is like navigating a minefield and eliminating 75% of the liver might make future treatments impossible. Was vague. Didn't seem to want to step on the regular onc 's toes. My question is, could a resection screw up the big picture? I always thought the best way to get a chemo break ("remission") is to have the cancer cut out. He seemed to suggest that this may not be
the best way. This goes against all I have learned. He pointed out that we may want to make an app at
Sloan with Dr. Nancy before a resection. At diagnosis, Steve had two cancerous retroperitoneal lymph
nodes removed. If we paid that kind of money for an HAI pump (and that would be hard to make happen)
and at the same time did the resection, the cancer would likely resurface in some other area, anyways. What do you guys think? Could a resection be the wrong move? Is it best to keep going with systemic chemo until it doesn't work anymore? Should we do TACE or Theraspheres instead of a resection? I just can't dismiss this to the onc not knowing what he's talking about. He's one of the top oncologists at this hospital. Would hate to do something that would screw up future options, but I've always thought surgery was the best way. Any thoughts?

Chelsea

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

Half a mil for the pump?  Did I read that right? Out of pocket $500,000? 

Well, if you came up with that amount, you'd just have to go all-in....couldn't second-guess about cancer returning in the future with a dollar figure that high....you would either seem to be in - or out.  If it came back, you'd obviously deal with it...and if it stayed away, then that would answer that side of the question.

My liver surgeon was going to take 80% of my liver, Chels.....and he never even blinked....only when he opened me and saw my liver, he determined that I would expire on the O/R table...and then switched to RFA.....though I know from what you've said, that this is currently not an option. 

My liver guy held to the firm belief that liver resection (even 80%...and with chance of recurrence) was still the gold standard....though I felt good that RFA benefited me in the same manner, as I was not afforded the liver resection....and therefore, I feel my longevity would have been compromised from straight chemo with no surgical intervention.  My body has had it and I can't take a forever chemo beating.

Chemo would have taken me before cancer would have at the rate I was going on my last fight.

As for what to do?

It's hard to know which way is the best....you pay professionals...and you hope they steer you the right way....and you use your discernment to convince yourself that what you have learned and what you have been told can now be applied in a real-world application.  I've done that throughout my entire battle....and you know my story....recurrence after recurrence....and now finally after the 3rd lick, I'm still clear *. 

If this guy is the top oncologist...you might just have to defer to his way of thinking.....he's obviously well versed and knowledgeable.  

I know that continual chemo to eradicate big tumors or multiple good-sized tumors is not the answer in the long run of things....not from what all my medical doctors have told me. 

I also know that there are people that extend for years on periodic and even perpetual chemo.....my onc said he had a guy on chemo for close to 20-years...he just flips him back and forth between the Folfox and Folfiri.  I think we can both agree that this would be the exception - rather than the rule.  Most of us can't do chemo indefinitely like that.  There are a few cases here were the patient has been doing it non-stop for 4-5 years and still going....not cured...but still going....but still on chemo. 

How long can that continue?

The individual's response to treatment has told us that in many cases - pro and con.

I was amazed by that story though, nearly two decades - safe to say that patient in his practice can obviously take a beating....but the majority of us will wear down from chemo over the long-haul...and the longer we remain on it, increases the percentages of the drug becoming less effective - or stop working altogether....it's the timetable + the individual that determines the length.   

It would be interesting to see if the HAI pump could change the situation to allow a future resection...I know that's an awful lot of $$$...even if I sold everything I owned, I couldn't get close to that......but if you can....it might be worth taking that risk if you and your husband agree.

But, don't think about it returning.....it either will or won't....so just getting the money and doing the surgery would be enough to be concerned aboout...and even if a resect were still not possible, perhaps the pump could keep a good quality of life until something else can be arranged. 

The key is to just EXTEND........

I just wanted to stop in and say hi to you; miss you guys and hoping for nothing but the very best of news!

-Craig

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Hey Craig. Nice to hear from you. He's saying that Sloan doing a resection, implanting the pump and servicing it for a year would likely cost half a mil! It would wipe us out. Have to sell the house and the cat too. He mentioned the possibility of the HAI pump coming to the Toronto area. This would take years. Steves cancer needs to be dealt with now. Steve does well on the Folfiri but at some point it's going to run it's course. He can't just continue on with systemic chemo and hope the HAI pump becomes available. I think we just have to deal with the cancer as it develops with whatever means we have at the time. Paying out of pocket for the pump doesn't seem sensible to me. I am worried that removing all that tumor may screw up other possible direct treatment possibilities.

Anyways, Steve is doing really well. You told me he would likely bounce back and you were right. He's made quite a comeback! Hope you're well. You have that MRI coming up fairly soon. I'm sure getting that over with will put your mind at ease.

Take care
Chelsea

geotina's picture
geotina
Posts: 2071
Joined: Oct 2009

With all the travel you will have to do to go to Sloan plus the cost of implanting and the pump itself, over a year I could easily see it reaching $500,000.00.  I may be wrong but it is my understanding that all treatments and everything revolving around the pump would have to be done at Sloan which means you would be doing a lot of traveling back and forth. The hospital itself should be able to give you some guidance on cost, how the heck you will pay for it, etc.   A few on the board have had the pump and it was very successful for them.

Liver resection is the gold standard most of the time.  If he has cancer anywhere else this will enter into the decision since you have to be off treatments for a while to prepare for the surgery.  Look around for the best liver surgeon with the best reputation and get an appointment to see what they have to say.  Some surgeons will not do a resection if there is cancer in other organs, i.e., lungs.

As far as Theraspheres, I am not a big fan .  I only know of one person who did this successfully and went on to liver resection and last I heard was NED,  and I can't remember if they had Theraspheres or SirSpheres.  One is radioactive beads and the other is chemo beads.   It is an option you maybe should explore though.

You are in a tough spot and it seems like you are not getting postive answers one way or the other.  Sometimes, the docs just don't know.  There are people on this board that have had more than one liver resection.  It is a huge operation.

Take care - Tina

 

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Tina

New York would involve a lot of travel. It would be a six or seven hour drive. Doesn't seem like a practical option. I don't want to have regrets later. However, I'm not sure it would be in Steves best interest to make the necessary sacrifices to be able to afford out of country treatment.

As far as we know, the cancer appears to be limited to the liver, at this time. This surgeon has a good reputation. Also has the reputation of being aggressive. Steves regular onc did not refer him. I found him through the Internet and called him. He saw us within the same week. Steves oncologist knows him. Has heard him speak at several conferences. She says he is aggressive but would not operate for no reason. Even though Quebec is our neighboring province, it is only an hours drive for us. I think part of my problem (Notice I typed I and not our. Steve leaves the worrying up to me. He's busy living his life while I'm busy obsessing over all this stuff. Lol. I'm very thankful that he's feeling better and enjoying life again), is that we are involved with seven different doctors - not including the one we saw today. We get a lot of differing opinions. It does get confusing.

We have discussed Theraspheres and TACE with this surgeon. He would go that route only if surgery was no longer an option. I asked if it should be done first to further shrink the tumors. He said, no. You're right. I too think that often times the doctors just don't know. I used to take the opinion of a doctor as gospel. I now know that they are just people, with their own opinions. I take what each of them say with a grain of salt. Thanks for the good advice.

Chelsea

gfpiv
Posts: 50
Joined: Apr 2010

Hi Chelsea,

You guys certainly have a tough decision to make.  I wish I could provide some guidance, but it looks like there's no clear-cut right or wrong path for you to follow here.  At least you are staying well educated on your options.

However, just wanted to add my two cents as an HAI patient.  (Yes, I feel HAI can be very valuable, but that doesn't mean it's the definite right choice for everyone.)  I would certainly recommend you talk to Sloan Kettering - if for nothing else, at least to clear your conscience that you looked into it.  FYI given the way the pump works, not everyone is a candidate due to liver vasculature (veins), and I'd imagine that in many cases, getting an extensive resection first MIGHT make it more difficult to place/perfuse the pump effectively. 

As for costs, I hate that more people don't have access to HAI technology, but I will say that my surgery and hospital stay for colon resection and HAI pump implant was just shy of $100k USD.  Getting refilled and monitoring once a month would of course add a significant cost, but I suspect it wouldn't approach $400k.  I believe FUDR is an off-patent version of 5-FU, so wouldn't be that expensive (and you could do concurrent systemic in Canada for "free").  So my barely-educated guess is probably closer to $250k for implant and 1 year service.  But of course MSKCC can give you a much better idea.  It really stinks to be looking at that kind of out-of-pocket; I'm not sure I would have been able to come up with that in my case. 

Either way, my best wishes for you and Steve whatever you choose!

-Chip

 

 

 

 

 

maglets's picture
maglets
Posts: 2441
Joined: Jun 2006

ahhh my darlin girl....there you are working triple overtime.....such hard decisions.  Glad that Steve is doing well and enjoying life....that is so good. I was never told before my resections that the surgery could impede future procedures and i know I have told you that 4 different surgeons did in my case have 4 very different opinions. One doctor was from the US and the other 3 were in Canada. I decided to go with agressive but that surgeon did require a PET scan and said he would not proceed if there were to be cancer anywhere else at the time of surgery.

Sending you both love.....have you taken time for a massage, a walk and cuppa???/

mags

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Mags. I have the name of your surgeon written down somewhere. He was on my list. Didn't realize you ventured over to the states. Buffalo NY? How far did you have to travel within Canada? Were they all in the Toronto area? Did your resection have to be done in stages? Aren't I full of questions?!

No massage yet. However, I am going to the dentist on Thurs which is something I've been putting off. Oh, I did do something kind of crazy last week. Got my long hair cut off short! In retrospect, PMS may have been a factor in this decision. But, it felt good to shake things up and do something for myself. It has certainly simplified my morning routine. Lol.

Thanks for the info.

Chels

LivinginNH's picture
LivinginNH
Posts: 1343
Joined: Apr 2010

Ahhhh, yes, go get a soothing massage or two!  I had one last weekend and it was wonderful!  :).   My dream is to win the lottery, then buy a bungalow on the beach in Hawaii and have two handsome men in shorts (only) massage me at once - no nothing like that....   ;)   I want my back and feet rubbed for two hours, at least twice a day.  ;). Oh, and I can't forget about the guy holding a nice fruity drink for me while another fans me with palm fronds...    Hey, a girl can dream!!    Heeheehee...   ;D

Chelsea71
Posts: 1170
Joined: Sep 2012

That is a nice dream. Unfortunately, we don't have any male massage therapists in Cornwall. All women. Steve gives me a foot rub most evenings. It's hard for me to enjoy because I feel guilty. He's on chemo and I'm getting a foot rub. Doesn't seem right.

Chelsea71
Posts: 1170
Joined: Sep 2012

Hey Chip. Didn't know that you have a pump. I think the onc was saying what you mentioned re the veins. A big resection would likely make implantation impossible. Best to do the resection and pump at the same time. We figure it can't hurt to do a consult with SKM. Good excuse to visit NYC. Thanks a lot for the info.

Chelsea

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

You have received a lot of good information and options...... Just thought I would let you know my experience. Last June I had a liver resection and the tumors were back in Sept. Had ct and pet in Oct. and had SirSpheres in Nov. and Dec.....my pet in March showed clear liver. You have so many decisions and stress....take care of yourself and best to you and Steve...~ Ann

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Ann. Wow, sir spheres alone cleared your liver. That's great! I wonder what the difference is between sir spheres and Theraspheres. I know it's radiation. Maybe just different companies? Anyhow, I'm glad it's helped you. Thanks for letting me know.

Chelsea

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I would suggest looking into TACE first if the issue is primarily liver tumors.  You could fly to Germany and have dr. Vogel do about 100 TACE procedures for $500k....

tedd

Chelsea71
Posts: 1170
Joined: Sep 2012

That's funny, Tedd. I got into bed last night and I thought for that kind of money I could send him to Germany. This all started with TACE. Ontario doesn't offer TACE. Quebec does. Went to talk to a Montreal surgeon about TACE or Theraspheres and he said that he wanted to work towards a resection instead. For Theraspheres it would cost us $30000. (15000 per treatment. they figure he would need two). Neither Quebec or Ontario covered this treatment. I think TACE is covered. Have to look into it. $30,000 sounds like quite a bargain after hearing 500,000.00!

Hope it's going well over there. Don't let Peter pressure you into drinking those seaweed and cucumber smoothies! Lol

Chelsea

maglets's picture
maglets
Posts: 2441
Joined: Jun 2006

I sent my scans to a doc in St Louis.....he said more chemo and then look at possible surgery in 6 months.  All other surgeons were in Ontario....the surgery was in one go..........I think it was about 6 hours.....

good for you for chopping the hair.....good to switch things up....

 

mmmmmmm now about this massage dream.......is the room for any other gals in this picture? Laughing

mags

Chelsea71
Posts: 1170
Joined: Sep 2012

Wow, six hours is a long time for a liver resection. How long did they keep you? Was the recovery brutal?

LivinginNH's picture
LivinginNH
Posts: 1343
Joined: Apr 2010

 

I suppose I can share....  LOL  ;D

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

By Dr. Nancy do you mean Dr. Nancy Kemeny? If so, she's been my oncologist since I got my second opinion back in March 2004. I have little doubt that I'd be here if not for her expertise in dealing with later stage colon cancer. I fortunately was covered for the HAI pump which I feel was instrumental in getting me to where I am today. My liver was inoperable at first but between Avastin, which got me to the operable state, then the liver resection where around 60-70% of my liver was removed along with the HAI pump being installed I've had ZERO liver issues since 2005. I've had lung mets but that's par for the course with stage IV colon cancer.

As far as what to do? There are NO guarantees at all in life and especially in cancer. What worked for one may or may not work for another. I wish that wasn't the case but it is. My opinion would be to have a consultation with Dr Kemeny (if that is who we're talking about) and see what she can bring to the table as far as options go. Then decide if it's something you want to move forward with. Maybe they have options to help people pay for treatment?

I hope this is of some help
-phil

smokeyjoe
Posts: 1428
Joined: Feb 2011

Have you looked into this .... Princess Margaret is doing a trial,  but not recruiting at this time,  I'm guessing it's full .......

This study is designed to see whether stereotactic body radiation therapy (SBRT) can reduce tumour size, slow progression of the disease, prolong life and improve quality of life. SBRT is concentrated focused radiation therapy delivered very precisely to the liver tumour.

Presently, the treatment for unresectable liver metastases from colorectal cancer is most often chemotherapy or novel targeted therapy. These treatments may improve survival, but not control the metastases permanently; so new treatments are needed to control metastases. It is hoped that knowledge obtained from this study will improve our ability to treat patients with liver tumours that cannot be treated with surgery and other methods, and that SBRT may prove to be a treatment that can lead to long-term and permanent control of liver tumours for some patients.

Wonder what  "novel target therapy"  is.       My onc. has set up an appt. for me at Princess Marg. for next week in one of their trials.   

Chelsea71
Posts: 1170
Joined: Sep 2012

Yup, that's the doctor I'm talking about. I figured she was your doctor. Dr Asmis spoke very highly of her. Said she knows all her patients by name. I am going to try and get an app with her. Unfortunately we do not have the luxury of time. Should have per sued this when Steve was in the early days of chemo. He goes for his final session (#14) in two weeks. The plan has been to wait four weeks, do some scans and then hopefully surgery. There is also a liver surgeon at Boston Mass to whom I will send Steves scans. Want to be comfortable that we have done our homework before making the next move. Really wish I would have done this months ago.

Thanks a lot!

Chelsea

annalexandria's picture
annalexandria
Posts: 2325
Joined: Oct 2011

about all I can say is that for me surgery was absolutely the right choice.  One thing I have noticed is that oncologists will often have a different attitude about surgery than the actual surgeon (tending to be more conservative), and that some surgeons are definitely more willing to tackle a challenge than others.  I think if it was me, I'd go with the surgery, but it's an awfully hard decision to make (I have the benefit of 20-20 hindsight so it's easy for me to say that).  What does Steve want to do?  Does he have a strong opinion one way or another?

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Ann,

I agree. Surgeons want to cut. Medical oncologists want to control with chemo. Some surgeons are more aggressive than others. Steve has always wanted to take the aggressive approach. He likes the surgeon we are dealing with in Montreal. He is very comfortable with the idea of surgery. I get what Dr Asmis means with his comparison of navigating a minefield. It's so easy to make the wrong move and have it all blow up in your face. To me it makes a lot of sense to have the cancer removed with surgery, when possible. This doctors attitude really made stop and think about the big picture. I would hate to make the wrong move now and have Steve miss out on a future treatment or clinical trial. But the cancer in his liver is an immediate threat. I don't think he has the luxury of waiting around for a liver pump to possibly become an option. With our luck, we would sell the house, spend our savings and investments on an out of pocket treatment only to have him succumb to one of those freaking blood clots! Can you imagine! I would have a hard time convincing him to forget doing the surgery (providing it will even be an option). I guess what's important is that this is what he wants to do. Sometimes I forget that it's not my cancer.

Thanks
Chelsea

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