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cancer has spread to the liver

susieq02
Posts: 4
Joined: Aug 2009

I have been a lurker on the boards since January when I was diagnosed with Endometrial Cancer. After the Hysterectomy the pathology revealed that the cancer had spread to a pelvic lymph node. So I was to get radiation - but before I started the radiation oncologist had me get a PET scan (which insurance has since denied) to see if it had travelled to the para-aortic region. Well it had so that meant chemo - 6 rounds of Taxol & carbo-platin. Finished that up the end of June. Then got another PET scan (for some reason insurance paid this one) and that revealed that the lymph node had not shrunk - it grew. So we proceeded with radiation. Fast forward 27 treatments and the darn lymph node hadn't shrunk significantly. So I started the search for a new gyn onco since my original Dr didn't want to do surgery. The radiation onco wanted to wait a month for another PET scan (but insurance denied it), and instead with a new Dr's belssing I had a CT scan yesterday. That showed that in 6 weeks 2 spots appeared on my liver. I had had another CT scan at the end of October which was clear.

I see the new Dr tomorrow, and according to my radiation oncologist I will probably need more chemo. Anyone have any ideas on what I should expect? I am pretty scared

Susie

Gunhild's picture
Gunhild
Posts: 37
Joined: Jul 2009

I don't have any idea of what you can expect next so I'm not much help to you. I do hope that you get some good information and options from your new MD. There are others on this Board who have done a lot of research and may be able to give you more answers than I can. Remember that we all are standing by and supporting you in any way we can as individuals.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Susie,
I had a chest Xray before my surgery ( total hysterectomy) and ended up needing a CT scan the day before my surgery because they saw a spot on my lungs in the chest xray which turned out to be nothing. Anyway I have not yet had a PET scan. That will likely come when I finish chemo at the end of December. So, maybe the spots on your liver are nothing...or scarring from a previous infection or injury. That's the problem with imaging left up to intrepretation.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Susie,

SO sorry to hear of this reoccurence in your liver. Sending healing thoughts and prayers your way that this new doctor can get an accurate picture for you and the regimen to send this packing...

Hang in and please stay in touch to let us know what the new Doctor has to say and how you are doing.

Laurie

susieq02
Posts: 4
Joined: Aug 2009

Talked to my new Doctor today, and we have a plan. We decided a biopsy and or another scan was out. The biopsy because there is a chance they would miss the spot because it is near the lung so the liver is constantly moving when I breathe. Scan is out cause of insurance and they are all 95% sure it is cancer.
So the plan is for Avastin - which is a more targeted therapy than chemo. It is pretty new - so hopefully stupid insurance won't say it is experimental like a PET scan. He seemed pretty confident that he and his staff could get it approved so hopefully I will get started in the next couple of weeks.
Thanks to everyone for all of the support

Susie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Don't give up your fight with insurance. I posted a thread about a month ago about dealing with insurance companies. Check this info out. It pays to be persistent and it worked for me - took awhile though.

Mary Ann

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Susie, so glad that you have a plan with the new oncologist......we are all here to support you in your new treatment!

Holding in you in my thoughts and sending very positive vibes your way!

Karen

Northwoodsgirl
Posts: 201
Joined: Oct 2009

So good to hear that you have a plan with a new Dr! If there are problems with getting the drug paid for you might want to follow up with the drug manufacturer's website as they may have sample letters which could be used by your doctor to appeal the no coverage if indeed that is the situation. Hang in there Susieq ( love your name:).
I am sitting here watching my hair fall out of my head for the second time in 6 months as I am in my last round of chemo. Getting a referral to lymphedema clinic as I am experiencing some swelling in my legs and pelvic area after the 22 nodes removed. On a positive note I am going to my lake home for a week until my next chemo on Friday. You are in my prayers for strength and healing.
Lori

susieq02
Posts: 4
Joined: Aug 2009

Has anybody had any luck getting treatment with Avastin approved by their insurance? This is the new 'chemo' my doc wants to use, but it is experimental for endometrial. Looks like my insurance will fight it, so the question is do I start and run the risk of owing 10 grand for each treatment? Oh and to top it off the drug company has a non-profit organization that will cover the cost of the drug but they cap your annual adjusted gross income and I am over that by a bit :( I figured out what the cost would be if I need a treatment every 3 weeks for a year - 170K. Anyone have any ideas? I have been trying to look into clinical trials but different sites have the same trial open and closed - it is so confusing :(

Susie

california_artist's picture
california_artist
Posts: 857
Joined: Jan 2009

Some phamaceutical companies will pay for your treatments if you can't afford it yourself. Try contacting the company or have your doctor contact them. You might be very surprised at the results.

Also, I am a firm believer in strength in numbers, so I would mention somewhere in the letter or on the phone that you belong to this big cancer board and everyone is wishing you get better or some such comment. You might also mention that all of us do have insurance that could pay for our treatment if it works out well for you.

You might also be able to see if your cells are responsive to Avastin.

The very, very, very best of luck and I'll see what I can find on the net to help you out.

sometimes life just really sucks, doesn't it?

You menitoned that you had enometrial cancer, is it possible that it's uterine papillary serous carcinoma a more seldom seen version of enodmetrial cancer. Be absolutely certain to get all of your hard copies of your reports. Your medical records center will provide those for you as long as you ask and have ID.

Love and hugs,

claudia

Wait two last questions. What size about were the mets to the various spots. and did they light up on the PET?? Mets over 1cm are usually properly identified as being active on the PET at this size and larger.

susieq02
Posts: 4
Joined: Aug 2009

I have been to the pharmaceutical web site and they do have a non-profit which will pay for the drugs, but they cap your income. In fact my Dr's office will usually start you on the treatment once you fill out the forms from the drug company. My problem is our income is just a bit over that cap - I asked if there was a sliding scale and the foundation rep said she didn't think so but it wouldn't hurt to try. Right now I am waiting to hear from my Doc about clinical trials - but he is out of town. I may just decide to start the treatment next week and figure out a way to pay when the time comes.

I do have copies of all my labs. I even had labs redone and they came back estrogen receptor positive. Kind of annoyed that my first Doc never tested that.

The spots on the liver were 9mm and 15mm. Couldn't get insurance to approve a PET scan, but new Doc said CT scan would suffice, because at that point we were just planning surgery to remove the non-repsonding lymph node.

A big thanks to everyone that has responded.

Susie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Fight that insurance company. Ask for a case manager from the insurance company AND your benefits company (you'll have 2 more people advocating for you and helping with the bureaucratic BS). Appeal. Get your doctor to appeal. Look up the insurance protocol info and write letters. Since you are stage 4 - I think an emergency appeal is in order.

They will probably give it to you in the long run. You just need to keep jumping through the hoops.

If you can find the previous thread - read it. If all else fails, tell them your husband will sue when you die - it worked for my co-worker!!

Mary Ann

positivenergy
Posts: 6
Joined: Oct 2009

susie, like you, my mother has endometiral cancer but upsc: uterine papillary serous carcinoma. it was stage 1c when they discovered it in may 2008. she had a total hysterectomy and 6 rounds of taxol & carboplatin. everything looked good in december 2008 but in june 2009 she had a pain on her side and we discovered it came back in her liver (or maybe it was overlooked because they noticed melengonomas in dec 2008 which in retrospect was prob the tumor onset)

she did a second round of a different chemo which they started in june 2009 but her body become immune to it by the 5th treatment end of october 2009 and so we were sent to a liver specialist. In her case, she had multiple tumors so surgery was not an option. However, they suggested RADIONEMBOLIZATION, a new procedure that they do through catheter sending nuclear medicine into the liver. This is only done in a few hospitals, we are in New York so it is done at mt sinai and there is also a hospital in texas that actually started the procedure. I suggest you discuss with your doctor or research online because it takes time to get insurance approval and make appointments so, start early. We had to wait about 4 weeks which in retrospect I fear allowed the disease to progress.

I wish you the very best and please remain positive and proactive. try to be careful mixing foods and eat simple foods, this helps. I bought a juicer (breville, you can order online from william sonoma or bloomingdales) and i make a juice with 3-4 stalks of celery, green apple with skin, bunch of kale (lacinto) and parsley for her every day (must be all organic though) and sometimes a protein powder or i add almond milk. my thoughts are with you, warmest regards, and thinking of you and all the members on this site. denise.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Considering your mother's recurrence, do you have any suggestions for others who have upsc. How long did she have the pain before she made docs aware? Any other symptoms? What do you mean by "or maybe it was overlooked because they noticed melengonomas in dec 2008 which in retrospect was prob the tumor onset)"??

I think it is troublesome that she was stage 1c and had this serious recurrence. I am 3a and had the same 6 rounds of chemo - the final 10 months ago.

What contributes to these recurrences??? What is the answer?? Is this just a "crap shoot"?

Your mother is fortunate to have such a loving, caring daughter to help her.

Blessings to you and her and your family. Mary Ann

mtnpeeps
Posts: 5
Joined: Dec 2009

I have to tell you how helpful it was to read your post. Denise - like you, My mother too was diagnosed w/ Stage 4 Uterine Cancer in March 2005 (Clear Cell Carcinoma) at age 75. Her oncologist told us that after chemo, it wasn't a matter of IF the cancer would return it was a matter of WHEN it would return & it usually was within 2 - 3 years. Well, she went 5 1/2 years & her doctor said she was in remission in April 2009. In Nov however, she had a pain in her side & went to her doctor. All blood work, etc. was normal so they did a CT Scan & found one mass approx. 4 centimeters in her liver. It was biopsied & was confirmed to be cancer. She will start 6 rounds of chemo 1/6/10 at age 80. They are going to do the full systemic chemo to kill any other "seeds" that could be lurking in her body. We don't know what to expect but I feel very positive that she will surprise them again.

Denise - can you post again & let me know how your mom is doing? My mother's doctor also stated that the cancer can become immune to the chemo drugs. His plan is 6 chemos, a CT Scan to see how it is responding, 6 mos. break - more chemo....
Thanks Karen

catbird
Posts: 33
Joined: Sep 2009

i have ulms. when getting my ct scan last week the tech told me to get a pet scan paid by insurance, most companies require 3 positives for cancer - ct scan, mri, & bone scan then they pay for the pet scans (pet scans cost 5 times the amount of a ct scan) so.....if anyone else is in this situation, be sure to check insurance 1st to get the pet scan covered.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My PET scan was covered for UPSC based on a sharp rise in CA125, followed by a CT-scan that showed enlarged lymph nodes. That was enought to get the insurance to cover the PET. I've never had an MRI or a bone scan.

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