[LisaG825]

Those of you that have been following along and know what is going on with me, I have a what would you do question. If you were in my shoes!

I emailed a specialist a list of all my information:

day I m/c, partial mole, that I was induced, dates of all blood work and my hcg #, date of chest x-ray, etc.

I have not met him in person.

Here was his response to my email.

You must have small focus of ActD resistant cells and should be switched to multiagent chemotherapy. Does you doctor know where your tumor is?

*I emailed him back and told him my dr. has not mentioned that I have a tumor and asked him what tests can be done to determine if I do have one.

He replied:
Your response to ActD has been unusual. I would suggest that your doctor send a sample of your blood to Larry Coles hCG Lab at University of New Mexico for testing to see if there is an interfering substance in your blood which might be confusing the picture. The fact that your urinary hCG was negative is of concern, as is your failure to respond to actD. I would do this before you receive any multivalent chemotherapy. It appears that you developed persistent GTN following your partial mole which means that you have a tumor either in your uterus or lung. The latter may not show up on a chest x-ray if it is too small to see. But if your hCG is truly elevated, then you have a trophoblastic tumor somewhere in your body.

Okay so he said it appears that I have developed persistent GTN. I looked that up and this is what I found.

Molar Pregnancy -- Ashley Hill, MD

Treatment for recurrent molar pregnancy, called gestational trophoblastic neoplasia, or GTN, in medical terms, usually consists of a chemotherapy medication called methotrexate. Fortunately, methotrexate is a pretty “easy” chemotherapy on the system, and can be given as an intramuscular shot. Sometimes only 1 shot is necessary. In other cases, multiple shots, or even the addition of other medications, is necessary. Also, when GTN is suspected, the patient usually gets a CT scan of the brain, lungs, and abdomen, and a battery of blood tests.

*** I have not had a CT scan yet. Would you ladies get one? I don't have any insurance so this would be out of pocket. OR I could wait about 2 weeks to see what my levels could do. Monday-I should be negative. Since I am not getting chemo next wed. my level may no go up the next week. I would have to wait until July 6th to find out.

Would you just pay for a ct scan or just wait it out?

[MeganMomof5]

If it were me, i'd probably wait one more time since you don't have insurance...That's just how I am...If it goes back up, I would for sure do what that doctor is telling you to do...I'm really sorry and I wish things were easier for you

[BuckeyeGal23]

I would probably wait it out because it's not a terribly long time to wait and since insurance doesn't cover it...((hugs)) I know this is so hard for you

[Servilia]

How much does the CT scan cost? I agree July 6th isn't that far away.. just a week and a bit. So maybe wait for that and if your numbers stay up then go for the CT scan. I'm sorry you're going through this

[LisaG825]

I have no idea how much it would cost.

[Kary♥RN]

I would wait the two weeks.. CT scans are about 1,500-2,000. Can be more if they do dye. And that is only for 1 area... you might need a CT of the Abdomin and Chest.. so that would be considered two so you are looking any were from 1500-4,000. That is a lot out of pocket. Have you looked into buying your own insurance? Or are you eligiable for medical assistance since you have no insurance. Also have you looked into free clinics? That maybe able to set you up with a discounted rate for these tests?

I would not let this go to long. If it was me. I would wait the two weeks. See what my levels do. Than if they go up. I would ask for a meeting with your Dr. Go over the information the specialist gave you. Ask fot a CT scan. If they go down. I would still ask for a meeting, to go over the info the specialist gave you, and get a game plan of what is next. What if the levels go with the next blood draw.. or the one after that.. than what? What is the long term Plan of care. If thier is a tumor what will happen in the comming months? Will it continue to grow were it is? Since you never made it to zero? I would ask Time lines.. How long are they going to let you test positive before they move on to something else? I would want plans.

These are just some of the things I would be asking.

I am so sorry you still going through this.. HUGS

I am so sorry

[zkat]

Lisa,

I was getting ready to post and Kary said it all and said it best. I would wait the two weeks, but I would not let it go much longer after that.

I am so sorry and hope you get to negative soon.

Kat.

[~LaurenNoel~]

No advice, but I am so sorry for all you are going through.

[Brittanie]

I'm in the same boat as everyone else. 10 days shouldn't make that much of a difference as far as the need for a ct scan goes, so seeing what your numbers do first is a good idea. Kary has some great advice on questions to ask your doctor though.

[KAB]

I also agree with Kary and all the other ladies. Lisa, I'm so sorry that you are going through this and it's dragging on so long, I know it must be really tough for you. Massive hugs your way!

[LisaG825]

The oncologist mentioned something that if it goes up to 50 they will have to do some tests to find out which chemo would be best. I assume it would be tests to find out if there is a tumor.

I am probably just worrying about nothing but it is hard not to. The worst case scenario just keeps running through my mind and I can't seem to stop thinking of it.

[dreamer10]

Lisa you have every right to be concerned. This entire thing has gone on way too long now. I agree with the others in that I would wait a few weeks and see what the numbers do. But like the others I also agree with the fact that you shouldnt let it go on too long. Insurance or no you need to get yourself back to healthy place.

I am so sorry you have had to go through so much. I hope things calm down soon and will be watching for your updates. Thoughts and prayers are with you...

[momof6lopez]

I have been following you since the beginning, and if it were me, I would wait the ten days.........but, I would need to research how aggressive this possible tumor is first. Being a cancer surivor, I take all cancers seriously, not that you dont..........

Had I of been more aggressive with my diagnosic testing when the suspected cancer was found, I could of saved my breasts and 3 yrs. of cancer treatment..was pregnant thoughand did not want to risk my pregnancy for the biopsy's and x-rays.........then I stubbornly breast fead for 2.5yrs, against dr. orders........if only I knew how serious it was going to be......

if it has an aggressive developement, i would not wait..........

[tobi4]

I agree witheverything the others have said already. I know for myself I had precancerous cells on my cervix and the Dr said we would wait and see what happened in 6 months. I refused to wait, set up an appointment with the specialist and was seen in a month. The cells had multiplied so quickly in that time, had I waited the 6 months it could have been very bad for me. So ..based on my own experience if it were me, I would need todo something to try to take back some control. And i think you do start to feel more in control with the types of questions that Kary has suggested. You need to know there is a plan and what it is, considering different scenarios. And I wouldn't wait on it either. The 2 weeks, ok, but no longer. In my opinion, the out of pocket, its just money. This is your life we are talking about. You cant put a price tag on that hun! ~~hugs~~

[LisaG825]

You know what I just thought of. I have "in a way" been pregnant for 43 weeks.

[Celena]

Lisa you have been biologically pregnant for 43 weeks like you said yes! You might be able to get that to process your ins thru health services.

I do want you to know that your health is nothing to play around with and that while yes I do think you should wait the 2 weeks to see what your numbers do, as well as that it may not be the worst case senario... it does pay to get it checked out. Find out what all options are, make your medical team aware of the fact you have no ins and that need the most accurate testing at the most financially fiesable expense.

My heart truly goes out to you Lisa :hugs: you're always in my heart and want nothing more than for you to be able to walk away from this, move on and be healthy!

BTW, with what Kary said... CT scans are VERY expensive! I was lucky to have good ins when I had one done w/dye because I only made a copay and that was it. It was in the thousands and they did from my chest down thru my abdomen.

[ohnicole]

Lisa, I agree with the other ladies about it being reasonable to wait for the CT scan, since it is so expensive. But if I were you, I would be really aggressive about finding another specialist who you can visit with in person (even if it is out of state) and get a second opinion. I know money is an issue, but please don't let this go any longer without getting a second opinion. To me, it really seems like your doctors have been passive about this whole thing, and it is not only your physical, but also your mental health that is at stake. You deserve the best treatment there is (!!!!!) and I'm really not confident that you're getting it with your current doctor.

If you do need to travel for a second opinion, I'm sure plenty of us would offer up a bed/couch or transportation. I know I am constantly dragging my vehicle in a giant circle from Wisconsin to New York this summer, and you are not too far from my path.

Do whatever you need to take care of yourself!

[LisaG825]

The oncologist- I do see in person. There are 3 in the office that I go to. They even had to contact another dr. about me though. They are 2 hours away from me. I just emailed that specialist (Dr. Goldstein) b/c he has specialized in it. Believe me if I lived there that is where I would be getting treated.
New England Trophoblastic Disease Center - Dana-Farber Cancer Institute

The New England Trophoblastic Disease Center, founded by Dr. Donald P. Goldstein in 1965, was the first regional center in the United States devoted solely to the treatment of gestational trophoblastic disease. To date, the Center has participated in the care of over 4,000 patients and has developed an international reputation as an outstanding clinical, teaching, and research center for trophoblastic tumors.

Monday I am going to call the hospital. I filled out a financial hardship last year and they paid 100% for a discogram, myelogram and 4 days stay at the hospital. I had problems with the myelogram. I think it was at least $15,000 that was paid.

[JessP]

Lisa I am so sorry that you are going through this still. I have been trying to keep up sorry I am not super at it. I think this could go either way. But CT scans are expensive. Sounds like you got some great advice. I hope that you get a plan with your dr soon.

[Celena]

Lisa I Was just going to suggest that.... our hospital systems around here do a program like that as well for uninsured patients where you provide income information and they adjust costs according to that. I've had a 1200- bill for going to the hospital for pneumonia (chest xrays, iv antibiotics, etc...) and it was reduced to 295- which to me was reasonable considering how much it was.

I'm glad to hear they have a program like that out there and you have the resources, knowledge about it so that your health won't be jepordized. I really want to see you and know that you've gotten past this healthy, happy, whole!

you!