Todd from Wisconsin - Dx 2005

[Bonni Hess]

Dear Cheryl,
Thank you for your thoughtful update. Hopefully Dr. Littrup will be able to provide a more definitive diagnosis based on the MRI scan results and radiology report. It is encouraging that the lesion has not grown since January, however as you told me in our recent phone conversation, your research has shown that hemangioma's are usually congenital and present since birth, and Todd's apparently didn't appear until 2007 which would seem to raise concern that it could be an ASPS met or some other type of lesion other than a hemangioma. As always with this disease, the only defnintive diagnosis is a biopsy or post-op surgical examination of the mass, neither of which seem to be appropriate since surgical removal of liver tumors is often not possible and biopsies can seed tumor cells if the lesion is malignant. I encourage you to obtain a copy of the radiolist report and CD copies of the scans for your own personal records, review, and comparison. ASPS patient Mario who occassionally participates on this Board has also had liver lesions for several years which to my knowledge are being followed by his doctors but have not yet been definitively diagnosed. Hopefully he will see your post and respond to share any information that he may have about liver lesions based on his experience. Hopefully too, any other Board members who may have information about this will write to share their knowledge or experience. I know how extremely difficult and stressful it is for you to have to wait until Dr. Littrup returns and is able to reveiw the scans and provide an opinion for you, but since the lesion does not appear to have grown and there is no immediate urgency, Hopefully you will be able to divert your worry and focus on trying to enjoy the holidays with your dear family. Take care Cheryl, have a beautiful holiday season, and keep the Board updated as you are able.
With special caring thoughts, healing wishes for Todd, warm friendship, and continued Hope,
Bonni

[Ivan]

we were told that it had grown from 9 mm to 15 mm since 2007. Don't know rate of growth since abdominal scan was not taken from the 2007 one to the 2013 one

Please get an abdominal MRI or CT every 9 months to a year

It's good to hope for the best, but it's even better to be prepared for anything this disease will throw at you. I think you are doing the right thing by being proactive.

Facts -
1) Most liver hemangiomas do not grow, but this one did (although slowly, so..)
2) Hemangiomas are similar in appearance to mets
3) Todd has ASPS
4) ASPS is known to metastasize to the liver
5) Although ASPS mets in tissues other than lung tend to grow faster I think

We can keep our fingers crossed. I think Dr. Littrup is off for a week (I was just communicating with Barb regarding my scans), so you should hear from him around Jan 1.

[D.ap]

Cheryl ,Todd and family

Our hope, wishes and prayers from our family to your family for good news soon on Todd's liver
spot.

Love
Debbie

[Todd's mom]

Thank you for all your well wishes!!! I still have not heard from Dr. Littrup regarding the reading of Todd's liver MRI. I e-mailed his nurse last Friday and still haven't heard back so if I don't hear by tomorrow I will probably try again. I am sure he is busy after vacation.

Wishing you all a healthy New Year
Cheryl

[Ivan]

Cheryl, he got back to work on December 30 - that's when they responded to me. Call Barb and ask her when he'll have the time to look at it.

[Todd's mom]

Sorry I have been a little slow in updating. Dr. Littrup's nurse finally got back to us about a week and a half ago. Apparently Dr. Littrup and other docs reviewed and compared Todd's liver scans and they think it is a thrombosed hemangioma, which is great news. However, I am not convinced they are completely sure of this, as they asked for another liver scan in three months. Also, since they don't have Todd's medical records, I don't know if they remember that this has grown from 6mm to 15 mm since 2007. I asked Barb to ask Dr. Littrup what is it about the scan that appears different from an ASPS met, and she didn't answer back. I hope they didn't take this as I didn't trust their opinion, even though I assured them I did. Todd also does not want to go through another scan in three months, so I am dealing with that aspect of it. Anybody know anything about thrombosed hemangiomas of the liver? The good news is that doctors in Wisconsin and Dr. Littrup do seem to agree that it's not ASPS at this point

[Olga]

Thank you for an update. Dr.Littrup is an excellent radiologist and his review of the scans is mostly very accurate, but it is a responsibility of the patient to include all the info with the scans re. previous history. Did you sent only one scan or the previous one for the reference? Benign conditions do grow too as we recently found in another patient's case when his pneumonia area grew and it appeared as a rapid lung met progression, but resolved after the antibiotic course.

But- whatever this suspicious nodule is, it is very important to keep the eyes on it. Do not press on Todd to hard, just plant some seeds of caution in his mind - tell him how easy to fix some met when it is found on a manageable size and how these mets kill the patient when they missed. Even if he reject the idea of the follow up scanning now, he might just need more time to realize the advantages, that the slow growing nature of ASPS is basically the only window of opportunity to effectively deal with it so why not to use it - and use an excellent Dr. that agrees to read the scans free of charge? 15 mm (and up to 25-30 mm) is a very manageable size for the ablation (depends on the location of course) and you have a time to watch it.

[D.ap]

Hi Cheryl
I was reading that liver hemangiomas as that get bigger can cause pain as well. Another good reason for it to be taken care of ASAP. Hope Todd's able to see the light
He is around 24? I assume he is still on your insurance. Might want to point out that out of pocket expense if outside of insurance isn't cheap .
I know the feeling of not wanting to go to the doctor. It's no fun at any age
Good to hear from you

Take care of you , too!

Debbie

[Bonni Hess]

Dear Cheryl,
Thank you for your thoughtful update with the seemingly very good and encouraging news that Todd's suspicious liver nodule may instead be a benign hemangioma. Hopefully this will prove to be an accurate diagnosis, but given the difficulty of diagnosing liver mets and the nature of ASPS to metastasize to the liver, I agree with Olga that continued vigilant monitoring and scanning of the nodule ( as well as all other areas of the body) is critically important to pro-actively fight and manage this unpredictable disease. As I have shared with you in a personal e-mail, ASPS patient Mario who posts on this Board, has a similar situation with a suspicious liver nodule which is being closely followed by his doctors at MD Anderson. Hopefully Todd will recognize the importance of being more pro-active and cooperative in his approach to fighting his ASPS because unfortunately it is not possible for ASPS patients to live in denial, taker a laissez-faire/nonchalant attitude, and just put their head in the sand and pretend/Hope that it will just go away. As those of us on this Board know FAR too well, ASPS may initially be an indolent slow growing disease, but it can also become very aggressive, rapidly progressing, and widely disseminating throughout the body if tumors are not diagnosed and resected/ablated/treated at the smallest possible size. Adequate, appropriate, and vigilant scanning are vitally important and necessary to be able to find tumors at the smallest most treatable size to ensure the best chance for a successful outcome to treatment.
With special caring thoughts, healing wishes for Todd, and continued Hope,
Bonni

[Todd's mom]

Thanks all of you, all great advice!!! Nice to hear that hemangiomas also can grow. I did let Barb know a couple of times that this "spot" has grown since 2007. She had forgotten at one point, so I did remind her. I just know since they don't have Todd's complete medical records, it could be overlooked. Yes, this is, I believe, the third scan of Todd's Dr. Littrup reviewed. I think I originally sent him two consecutive CT scans taken three or six months apart, and then, of course, the MRI he wanted done. It is also so great to hear that Dr. Littrup knows his business and that I certainly do have a lot of reason to trust his judgment, realizing, of course, monitoring does need to happen. The thing that keeps holding me back, though, is that Todd was diagnosed in 2005, had full body scans, and apparently did not have this lesion. How would it just happen to "pop" up in 2007, at the same time his lung mets appeared? If someone can get me over that hurdle I will be completely thrilled!!!

[Olga]

I do not have an answer here. These two consecutive CT scans that were taken three or six months apart would show that the lesion did not grow so you had to include the initial scan from 2005 - the base line scans are taken for exactly this purpose - to have them available when the need to compare arises. The coincidence of the timing is alarming. I would obtain the copy from 2005 and send to Dr.Littrup.

[D.ap]

Hello Cheryl
I found an article liver hemangiomas

http://www.buzzle.com/articles/causes-o ... gioma.html
Hormone irregularity came cause the growth I believe?

Any way. Worth looking at..
Olga's suggestion is very important. I would not be surprised if there was mention of the growth back in 2005 in the scans
And in the reports

Regardless of what it is please keep track of it and if it becomes larger than Olga reports is beginning to become TOO big to be eliminated, be proactive and get rid of the growth. Better safe ..

Love,

Debbie

[Todd's mom]

Yeah, I should probably work on getting those original scans from U of Minnesota. His Milwaukee doctor has them, but I would like Dr. Littrup to see them as well. I may wait till closer to spring so as to not bother Todd with it again so soon. On a good note, since Todd had his next CT scans of lungs and liver already set up for next July, Dr. Littrup's nurse said we could just send those in instead of getting them redone in March so Todd was happy with that little reprieve, anyway. Debbie, thanks for the link to hemangiomas. It was really helpful. Better than anything I was able to find