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Wednesday, May 2, 2012

"This tumor won't kill you, however..."

When you get a call from your oncologist that you miss and then he leaves you his personal cell phone number and says "call anytime", panic can set in. We texted back and forth late last night before finally having the time (uninterrupted by children in my case) early this morning to talk in depth.  Here we go:

My case got into the oncology discussion yesterday and he said they had a "very long panel discussion" about my tumor. He lead by asking if Kate was a vaginal birth with no tearing or episiotomy. I discussed her  birth in much less depth than I did here and here, just hitting the parts he was concerned about as well as a brief history on my infertility treatments. He was surprised that no one had noticed the tumor in all of my previous infertility treatments or subsequent ultrasounds for Kate.

The consensus among all the panel members (oncologists, radiologists, pathologists, etc) was that this was a slow growing tumor that had been around for a long time. It does not spread to other areas in a traditional cancer way but it will continue to grow as a mass which can cause quite a few problems of its own. In a very few percentage of the population, these tumors start in childhood but there is no way to know if mine falls in that category.

Here's what they know for sure. It's in a ridiculously difficult spot to remove. There are two different surgery options.

1. Take out only the tumor which would include a total hysterectomy because part of it is fixed to my uterus. This option leaves a high chance that microscopic cells would be left behind so radiation treatment would also be needed. Even with that, the probability of it returning is high.

2. Take out tumor and all surrounding organs to include part of colon, rectum, uterus, resulting in a permanent colostomy. This option is the best to *almost* guarantee that it will not return.

Obviously their first choice would be to not do option 2 but here's the catch: once surgery is started, if they see  microscopic cells left behind I can do radiation but leave my organs (minus the hysterectomy) intact. But if a big lump of cells or even a piece of it is left they would make the decision during surgery and I could wake up to a colostomy bag.

This surgery would involve a team of surgeons to include Dr. Bilimoria, the surgical oncologist who would act as coordinator, a colon/rectal oncologist, a gynecological oncologist and a urologist for the bladder and kidneys. I would be in hospital for 7-10 days with recovery adding an additional few weeks.

No one was in favor of starting medical treatment (i.e. surgery, radiation or chemo) until they can ascertain how fast it is growing. I will go back the end of May/beginning of June for another MRI. He was quick to say that even if the tumor grows another 2cm by then, it would not change the type of surgery they would recommend. If the MRI shows little or no growth they recommended leaving it alone and watching it through recurring MRIs to see what it's doing.

This tumor will not respond to traditional chemotherapy as that only works with fast growing tumors. My kind of tumor can respond (i.e. shrink) to tamoxifin (estrogen blocker) or a "super form of aspirin" but it's not 100%.

So I go back for the MRI in a few weeks. Once those results are in I will meet again with Dr. Bilimoria, the surgical oncologist, as well as Dr. Agulnik, the medical oncologist, to discuss the results and their recommendations.

So I got off the infertility rollercoaster, then managed to finally get off the adoption rollercoaster and now I get to take a ride on the cancer rollercoaster. I may not die from this but it's not going to be a pleasant ride.


13 comments:

Christina said...

I'm sorry you are going through all this. Keeping you in my thoughts!

Emily said...

:( i was really pulling for the "it's not cancer- call" i truly am sorry you have to get on this ride-- praying for you!

Karla said...

Wow . . . I have no words. You and your family are in my thoughts and prayers.

Lynn K said...

That is a lot to take in, I can't imagine. I have a friend who had option 2 done (for a different reason). She is the mother of twins. The surgery was done several years ago and she is doing great. There are still many steps before decisions are made. Stay strong.

Smitha Mathew said...

Praying it won't grow at all.

These decisions are so difficult. After one of my family members went through a difficult medical situation I had read somewhere that there was a research service which for pay, can collect different research material on a subject. Might want to google for it if you need latest research information.

Also, even if you think you have the best teams always get second and third opinion. Mayo clinic is not too far from Chicago. If there is any special facility in Minneapolis area, you can come and stay with us.

Smitha

mommy of 2 said...

um, What the...
You really, seriously, need a "normal" year. whoa. But you do have two toddler girls in your life so I don't see "normal" coming any time in your future. LOL I'm glad to hear it's not terrible news but sad to hear it's not a quick fix either.
Kerri

ashley said...

That is a lot to take in. I'm relieved to hear that you got into the study. It sounds like you have a great team of medical professionals supporting you. You are in my thoughts and prayers!

"M" said...

Just catching up with you and WOW, I cannot beleive all that is going on in your world. Sending lots of positive thoughts your way.

Jodie said...

I agree...this is a whole lot to take in and process. Deep breaths. We're all standing behind you, beside you....with you, my friend. I'll be sure and stock up on the Dramamine for this crazy ride. It's looking like there may be a few sharp curves along the way and we can't have you throwing up everywhere. It's hard to think straight when you're nauseated...and you'll definitely want to think straight. :) Love and hugs, my friend!!! xoxoxoxox

Elizabeth said...

Oh Lisa! You have some difficult decisions to make. It is good to hear that the doctors don't want you under the knife next week and feel that monitoring it for a month or so won't do too much harm. Would shrinking it with tamoxifen make the surgery any easier for them? Take care. Sending all my positive thoughts and prayers your way.
Elizabeth

ashley said...

Just wanted to come back and say that I think it is smart to not make a quick decision. Obviously, listen to your doctors but also get as much info on your type of cancer as you can. Maybe that means a second opinion? I went into my surgery thinking they were going to remove a small and slow growing tumor. Woke up in recovery to the news that I had been given a complete hysterectomy. Yes, I'm glad that did what they needed to do because I am here and healthy but I definitely would have liked to know all potential outcomes before hand. I am thinking only the best possible thoughts for you. You are doing a great job with all of this being thrown at you.

Blessedbabs said...

Lisa, SO happy to hear that this isn't a fast growing deadly cancer, but so very sorry that it is going to be such a long and bumpy ride for you. I agree on the second opinion, and also the question asked about whether Tamoxifen could shrink it making it any easier to remove. Our prayers will continue to be with you throughout it all!

Susan said...

Do you even LIKE roller coasters?? If you did before, probably no longer. As a bit of encouragement, Carolyn's very-serious-inoperable-brain-tumor is being controlled with a special IV-drip treatment. Medicine has come up with some amazing things. I'm sure your doctors and you and Len will decide upon the right combination of treatments. Carolyn has MRIs every month or so, too, and that seems to be the key to staying on top of it all.
So, should I send you some dramamine to go with whatever other meds they put you on?

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