Jen from California - Dx 2009

[Bonni Hess]

Dear Jen,
Thank you for your thoughtful update. I'm sorry that your account was somehow de-activated, but I am grateful that you persevered to re-activate it and share your updated information. I am so glad that you were able to get a brain MRI and that it was clear I'm sorry that you don't trust the scan results, but Hopefully it was accurate. If you still have concerns, you can request to personally visually review the scan with your oncologist or the radiologist and compare the scan with the previous one which was done in 2009, and you should always request a copy of the radiologist report to have in your personal files.
I strongly disagree with your UCLA oncologist's attitude that a full body bone scan "isn't necessary since the ASPS is pretty stable to slow growth, and you have no other symptoms to lead him to believe there are mets in your bones". Brittany's tibia met showed up during a period when her lung mets were relatively stable, and she had not experienced any symptomatic pain. You DO NOT want to wait until a met becomes symptomatic because once a met is causing symptoms like pain and/or numbness, it may be too big to successfully resect or treat with ablation or radiosurgery. It is critically important to monitor this unpredictable disease with complete and vigilant scanning of all parts of the body even if it may appear stable in other parts of the body. Unfortunately, too many oncologists are remiss in doing this, and too many ASPS patients suffer the heartbreaking and sometimes tragic consequences of the oncologists' lack of knowledge about the nature of this disease and their inexcusable negligent lack of vigilance in adequately monitoring it with regular scans.
Additionally, I am concerned/perplexed as to why your scheduled chest CT is being done without contrast since contrast is necessary to most accurately determine and measure any possible increased lung met growth. This is an important question for you to ask your oncologist.
My most special thoughts and very best wishes are with you for very good scan results which show stable disease and shrinkage of your lung mets, and I will be anxiously awaiting your update when your time and the situation allow. Take care dear Jen.
With deepest caring, healing wishes, and continued Hope,
Bonni

[D.ap]

Jen
Good to hear from ya.
When is your doctors appointment to review your CT with contrast ?
I think that it is important to discuss with your oncologist about your rib also
I do know that a person can break their rib(s) by coughing without radiation treatments
But it doesn't hurt to revisit the topic with your doctor


Love
Debbie

[D.ap]

Jen
The scan is without contrast Oh.
Bonni has a good question for you to ask your onc

[Ivan]

Welcome back, Jen! I have no idea how your account got deleted, all I can say is that it wasn't done on purpose. You are very welcome here.

How often are you getting your scans? If it's less than 6 months, have them compare growth to an earlier scan. A few years ago I found myself in a situation where a scan at time A was noted as having "largest nodule of 8 mm) and then followed a few scans where the radiologist said that everything was stable. Then, at time B around 1.5 years later a scan was noted as a "slight increase" where the largest nodule was noted as 1.5 cm sending us running for surgery like a chicken with the head cut off.

Ever since that day I read my own scans to verify the words of the radiologists.

[jenhy168]

Thanks all for the good advice.

I asked my onco the question of why I am doing my chest CTs without contrast a half a year ago, and I think he says that contrast wasn't necessary. I guess next time I'll ask for him to request CTs with contrast. The radiologists do however always compare the current scans to the previous one.

Once I meet with my onco next week, I will ask for a full body bone scan. Do these scans require contrast as well?

[Ivan]

| always compare the current scans to the previous one

That's very very bad because it doesn't work well with our slow-growing disease. Have them compare to a few scans back.

[jenhy168]

Ivan, what is very very bad? What are you referring to..?

Thx~

[Bonni Hess]

Dear Jen,
I strongly disagree with your oncologist that contrast is not necessary!! If it weren't necessary to make the most accurate determination of increased tumor growth, then why would it be used by other oncologists?!? CT scans without contrast may be able to show if there are any new tumors, but they can't show tumors at their smaller more treatable size or if there is minimal growth of existing tumors which is really important to know to determine if the disease is progressing or not.
Also, Ivan is absolutely right about it not being adequate to compare current scans with the previous one because sometimes the amount of growth from scan to scan is very small, but when compared to scans from several scans before it may actually be quite significant. You don't want to naiively think that there is little to minimal growth and then suddenly find out that the mets have actually grown significantly during the longer time period as has unfortunately happened to several ASPS patients including Ivan. Being knowledgeable and very pro-active with the doctors is essential in fighting this very challenging disease.
With very best wishes for good results from your yesterday's scan, healing wishes, and continued Hope,
Bonni

[Ivan]

Ivan, what is very very bad? What are you referring to..?

Thx~

From my previous post -

A few years ago I found myself in a situation where a scan at time A was noted as having "largest nodule of 8 mm and then followed a few scans where the radiologist said that everything was stable. Then, at time B around 1.5 years later a scan was noted as a "slight increase" where the largest nodule was noted as 1.5 cm sending us running for surgery like a chicken with the head cut off.

So the growth was too small to see if comparing two consecutive scans but compared to 2 scans ago it would have clearly been visible.

[Amanda]

Hi Jen,
I am also in Calif
I had four inches of my 8th rib removed they also thought it was some thing else!
They said arthritis??? I believed them an then years later i found ASPS..
It had eaten a lot of my rib! I ma fine now an they removed part of my chest wall and NO radiation! Do NOT do that pleas... chances are it is in the bone an as a precaution they removed part of the wall touching it..
I went to John Wayne cancer ctr in Santa Monica an my Dr is Leland Foshag.
I am off to bed let me know how you are an I hope very much they act on this asap so it doesn't get bigger an eat more away then it sounds like it has already ... an yes, it looks like a break
Let me know if you have questions or want to see my Onc in Santa Monica he is great...

[Amanda]

I cant edit my post so here is a second half asleep posting

I wanted to add that i can not do contrast any longer it is making me sick My CT"s are read an so far all has been ok for a few years...
Contrast makes some people sick and there are mixed views on the use in patients that have been stable or have been found to have a very idolent ASPS... Is contrast safe?

Jen, it feels great when an Onc says awww its ok this is stable or slow. Thats not ok ... Trust me it is better to act fast and get it out of the way so you can go on in life

If this is ASPS i will give you all the info an also let you know what to expect an how to care for yourself..

I want to reiterate that radiation in that area is a bad idea an dangerous it makes you sick on top of it

Im sorry its not all happy replies right now from everyone i am sure it feels not so great.. an maybe overwhelming
But, it is coming from a place of caring an wanting so deeply to help you and everyone else that has this sarcoma.
If i wouldn't have listened to the people that are posting to you right now i would have done chemo they wanted to do an my situation would have been very different! I am doing well from the knowledge that at times was hard to read but helped me!
So many small boo boo's have hurt our ASPS family over the years

Anyhow, please get in contact with me when you can an i will help you as best as i can to help you make your decision on how to deal with the rib...

[jenhy168]

Thanks Ivan for your clarification. Whenever there is growth in the lung mets for one to two consecutive scans, my onco and I always act accordingly and discontinue the current treatment and look for other treatment.

Amanda - What scan do you suggest I get to make sure what caused my rib fracture? Full body bone scan? Is that the only way I can find out what's really going on? All these scans are very expensive so I have to choose carefully since I don't work. I do have COBRA health insurance, but I still need to pay a lot out of pocket.
My gut feeling is that the rib fracture was from all my coughing, because I would go into multiple coughing fits a day, and cough a lot for the past year. But of course I still want to make sure the fracture isn't caused by ASPS. Also, how has the contrast made you feel sick?

[Amanda]

Hi Jen,
I would do a CT guided biopsy of the rib done by a person that works with cancer patients if is isn't the radiation an is suspected to be ASPS.
As Olga said it maybe from the radiation.. or it could be ASPS as it was with myself...

I feel sick from contrast an nausea... I wasn't like that for the first two years an i was getting the contrast every three months for CT chest, abdomen, pelvis scans... I also cant do the barium that you drink that makes me throw up now
I went to Cedars an they have a compassionate care program to help you pay the difference in what insurance pays. It is where i had the biopsy done. I lost count of how many times i was scanned an i bet i glow now lol

My cancer went from my right calf to my 8th rib and i have a few in my lungs and will be having two surgeries a few months apart to have these removed.I am telling you this because this cancer goers where ever it wants when ever it wants.. Really my 8th rib???
I hope that your Onc orders these scans an that it is as he is stating a break from coughing! Please, do not let your Onc be relaxed an stay proactive rule it all out as best as you can.

[Bonni Hess]

Dear Jen and Amanda,
Regarding your recommendation of a biopsy of the rib Amanda, I personally would be very cautious about having a biopsy done as sometimes biopsies can spread tumor cells if the biopsied area proves to be ASPS rather than something benign. It seems that the better and safer approach would be to monitor the fracured rib with regular CT scans with contrast to determine if there is any kind of a metastatic growth or progression which would be indicative of ASPS.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

Hi Bonnie
I agree to an extent.. But if it is fractured an is ASPS it is worse because it is now open to spread more because of the fracture an waiting a long time can be more dangerous.
I would opt for the CT scan an then see because it will show a met or as a destructive area in the scan as it did in mine.

I feel that Olga though maybe right that radiation may have done this and then Jen coughing would have broken the rib.

My biopsy was done at Ceders with a person that works with cancer patients an because the rib is at skin level it makes it less likely to spread i would think.
So far i am ok.. but yes it is a tricky thing to do but well worth it if it is strongly questioned as a met! It is at the chest wall an that can create yet another worry of spread.
I have had a large part of my chest wall removed to make sure as best as we could because of the fracture it had not spread macroscopically to the chest wall ...

My advice is what i would do an everyone should question an look into there own cancer treatments to make there own educated decision...