A very awkward subject

mom_2_3 said:

Proximity
Rose,

I am fortunate enough to be 25 miles from NYC so getting into Sloan only takes about an hour (2 hours if I leave at rush hour). But, we do have a smaller cancer facility in our local hospital that is only 5 miles away. That is where I went for my first consult.

When I started at Sloan my oncologist said I could take treatments at the local facility but I had such a horrible association to that place (it's where the oncologist was that told me I was inoperable) that I had no desire to go back there. I would rather drive into the city and be in a place that has such a positive feeling. I have met others at my center, however, that have our Sloan oncologist call the shots with respect to treatment but the treatments are done at their local facility. So they only fly in for CT scans and perhaps some specialized treatments. But the bi-weekly chemo treatments can be local.

One thing that Sloan does that isn't done in many other places is the HAI pump which is a chemo pump inserted into the abdomen and it directs chemo right to the liver. It can be used prior to surgery to bring liver mets under control and allow for resection. It can also be used after surgery as adjuvant treatment to kill microscopic cancer cells in the liver after surgery (which is what I am doing). I have met and know of a number of people whose livers were virtually covered in tumor that have either become resectable through this treatment or have had their tumors shrunken and go down from numerous to 1 or 2 left. If you can get a referral to Sloan I would take it that opportunity to at least have them review your husband's case.

If you do go for consults/treatment at centers that are not close to you there are wonderful groups that can help you with travel (like Corporate Angels) and accommodations (most cancer centers will have a list of places that offer free or reduced housing). If you came up here you would be welcome to stay with us in NJ.

One other thing I do love about where I am treated is that the floor I go to is primarily colon cancer. So when I sit down I know I can pretty much strike up a conversation with someone that is going through the same treatments as I have. Many I meet are years out for their diagnosis and simply coming in for follow-up bloodwork or CT scans. It is amazing how meeting people that are doing great with a Stage IV diagnosis can have a tremendous impact on your psyche. Our best friend's father is now 5 years out and NED after a Stage IV diagnosis and seeing him and talking with him gives me great hope for my own future. I feel like if he can do it, I can too. Also, the people that treat me do nothing but colon/liver cancer. So they see people making it through everyday. When I think back to that original oncologist who so cavalierly told me I had a timeline I give him some slack as I know he treats every kind of cancer. If he is treating colon, liver, lung, breast, lymphoma, prostate, etc. then he won't tend to see as many colon patients and therefore not see as many do well. Additionally, there is no way he can have the expertise in colon treatments as my oncologist has.

When I first met my oncologist I asked her my prognosis. She said (and I paraphrase) that she didn't know, how could she know. Everyone is different in how they respond to treatment. All she could do was bring to bear her experience in treating me but that I could do my own part by exercising as that has been shown to help prevent recurrence.

This is my oncologist (http://www.mskcc.org/prg/prg/bios/123.cfm). If you google her name you will see she is well-known in the colon cancer world. This was my liver surgeon (http://www.mskcc.org/prg/prg/bios/708.cfm). Don't let his youthful (and really good looks) fool you. He is top of his game. This was my colon surgeon (http://www.mskcc.org/prg/prg/bios/12.cfm). Top-notch guy and straight shooter. In addition to them I have had phenomenal care from the moment I started there. Everyone, from reception to scheduling to chemo nurses to radiologists is great. Let me know if you have any additional questions about MSK.

Rose, it seems like you are taking steps to research other treatment locations which is much in your favor. I read a study that showed that people that go greater than 10 miles from their home have more favorable outcomes. The postulated reason is that those people get out of their comfort zone and will look for the best and not the most convenient treatment. Don't ever lose sight of the fact you need to advocate (as Kimby so eloquently stated) for your husband and your family.

Amy

PS I dont' know if you find strength in prayer but I will keep you in my own prayers. The night before I started my first chemo treatment I went to a healing session and the word of God as spoken by the leader of that meeting was that God wanted to heal "neck pain, puppies and cancer of the lower body and liver." I was amazed as there were only a few people there and I certainly fit the last ailment. When the pastor laid his hands on my abdomen I felt a burning sensation that I had never felt before or since. 4 treatments of FOLFOX and my liver mets shrunk 40-50%. 1 more treatment of FOLFOX and then had my liver surgery. The pathology from surgery indicated the largest liver met was 80% smaller and 90% necrotic or dead. Some might say that the chemo did that but I believe there was another Power at work.

amcp said:

Vanderbilt Medical Center
My husband was diagnosed with CRC Stage IV in 8/06..had colostomy followed by 2 plus years of chemo. Told from the beginning just pallative care being given..may live 2 yrs. Mets to liver and lung. In 12/08 told nothing more they could do so they were sending us to Vanderbilt in Nashville Tn. for possible clinical trial. We went the end of Dec and met with DR Laura Williams Goff...Medical Oncologist... she is located at 1301 Medical Center Drive..1903 The Vanderbilt Clinic...appt phone number is 615-322-6053. She is fantastic..to make a long story short..she said my husband was not a candidate for clinical trials but thought he was a candidate for liver resection. Sent to Dr Alexander Parikh ..Surgical Oncologist...he said he could do resection but lung met had to be taken care of first. Sent to Dr Eric S Lambright who did the lung cancer removal with only having to remove 4% of his right lung only after my husband had quit smoking. Then went back to Dr Parikh who did liver resection on 4/30/09..removed 75% of right lobe of liver...largest cancer he had seen and it had connected to the diaphram. Was able to get it all and now husband is NED. He said he has 1 in 3 change of never having cancer again, 1 in 3 chance of if it comes back will be treatable or removable..and 1 in 3 chance of nothing can be done. We went from no HOPE in Dec to now in May he is cancer free. There is a Hope Lodge you can stay at free if you ask for a referral from Dr Goff. Go or call immediately. We only wish we had gone there when we were first told he had cancer. you can pm me at amcp and I can give you my phone number or whatever help you need. There is HOPE. DO not give up.
Praying,
Anna