Diagnosed W/Uterine Cancer Last Week

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 96

Hi, Last week I had an abdominal hysterectomy, at which time the hospital discovered I had uterine cancer. I dont even know what stage I am in, but I do know the lymph nodes were removed and there was no cancer found in them. The surgeon called me (not my doctor) and informed me that it was a moderately agressive cancer, and recommended radiation. I do not have medical insurance. I was wondering if anyone can tell me if they had radiation treatments for this, and how soon did their doctor initiate an appointment or referral to an oncologist? Any advice, recommendations would be appreciated.

Anonymous · Guest

first...my sympathy for your anxiety

second..don't listen to your surgeon..go directly to an oncologist

thirdly,,I don't know what state you live in but MOST have medical assitance programs..talk to your local hospital

Don't put this off
If you need to talk more or need more advice, you can e-mail me
scallopedge@msn.com
please let me know how you make out

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 96

Thank you scallopedge for your kind words.

I have an appointment next week with my gynecologist; and will ask for a referral to an oncologist at that time. My doctor never really explained the cancer to me, so I will be armed with questions when I go this time. I have applied for Social Security Disability and attempting to apply for Medicare/Medicaid, which is contingent upon disabilty accepting me in Oklahoma. To my surprise, I have been reading some people with cancer cannot get Disability unless they are in later stages or have certain types of cancer.

As you suggested, I will try to get the social worker at the hospital to help me with this in trying to get treatment. I talked briefly with her after the surgery, but I was so groggy and shell-shocked; I was not prepared.

Again, thank you for your advice and kindness. You are right, I cannot put this off, because time could make the difference for me. I will let you know how things turn out.

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 96

To update my situation: My gynecologist revealed to me the tests results and has now referred me to an oncologist. I have stage three cancer, she said it was like an endometrial cancer and a sarcoma, so I am a bit confused. Cancer was present in one of the lymph nodes, contrary to what this surgeon said (who I found out is an oncologist who was called in to assist in my surgery). But it is classified as a Stage III endometrial cancer. Needless to say, this is distressing news for my family, but I do believe in God, and I am believing He will pull me through this. I think all of this is hardest on my twin sister, more so than me. I am to see an oncologist next week, and everyone wants their money first, which I dont have. Medicaid sent me a rejection letter, without me putting in an application for it first, or talking to a social worker. Shocked

At least let me put in the form first, then send a rejection letter--all I did was request to apply for it. Hopefully Social Security will come through, but thankfully my gynecologist is calling places about my financial situation to help.

Olly

Hi,
Just wondering how things are going for you now. I don't understand the medical system in the US but I hope you got the assistance you needed.

Do you know anything further about your cancer? What type it was? I'm interested because you mentioned sarcoma. If you have the same type as me I can recommend a group on the interent for you to join.

All the best
Olly

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 96

Hi Olly,

I have yet to see an oncologist, and I am scheduled for my first visit this coming Tuesday. Without insurance, its been a real fight; I was diagnosed with cancer September 28, 2005, and my first visit with an oncologist is January 17, 2006. I have applied for disability in an attempt to get Medicaid, as to whether this is acceptable to the oncologist is another story. Hopefully, he will not turn me down when I go in for my visit. I have been trying to see an oncologist for quite some time, but never been able to get through. I did manage to see a radiation oncologist who treated me, I just got out the hospital two days ago from an internal radiation implant. I also had 30 radiaiton treatments (external).

I am not sure about the sarcoma. My gynecologist said I had a form of sarcoma, but the radiaiton oncologist said it was a benign tumor called Leiomynoma. I guess until I can see an oncologist, I will remain in the dark about this. What I do know is I have Stage III-C Endometrial Adenocarcinoma, the sarcoma I am not too sure.

Thank you for your kind words. Without insurance or money its very difficult to get treatment in the US, if not impossible until the disease has progressed enough to go through an emergency room. Thankfully, a social worker at the hospital was able to help me to get as far as I have gotten. If all goes well, I will post what the oncologist says about my type of cancer this week.

What kind of uterine cancer do you have and what country are you from? From my limited understanding, the sarcomas are more rare.

Take care now,
Rhonda

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 96

When I visited the oncologist, he said it was endometrial cancer (Stage III-C Endometrial Adenocarcinoma), and that he would have pursued treatment differently as opposed to my radiation oncologist. I thank God for my radiation oncologist, because she helped me to get some kind of treatment when I couldnt get an oncologist initially to see me. I forgot to ask about the sarcoma; my mind was in a stuper that day, and I should had wrote down questions on paper to present him.

He said he would have used radiation (to treat my upper abdomen) and chemotherapy. He said I could take chemotherapy, but it would only make a marginal improvement in my condition. He also said that I will need a chest x-ray at least once a year, and a pelvic exam every three months for the next two years. My question is, how can someone tell if cancer is present from a pelvic exam? My gynecologist looked up there many times seeing nothing, yet I had cancer. At first he was talking about CT scans, but when I told him I had no insurance, it changed to the pelvic exams every three months. I will have to see him in 3 months, this time I will be better prepared with questions. Can anyone tell me how often your followup visits are, and what they entail? Also, how often you undergo CT or PET scans? I cannot see not having some kind of scan at least once a year for the next couple of years.

Olly

[quote="rmaureen"] I forgot to ask about the sarcoma; my mind was in a stuper that day, and I should had wrote down questions on paper to present him. [/quote="rmaureen"]

No worries. I think anyone diagnosed with cancer suffers a sort of shock that lasts a long time after (forever?) and effects their memory, concentration etc. Yours isn't the same type of cancer as mine.

[quote="rmaureen"]My question is, how can someone tell if cancer is present from a pelvic exam? My gynecologist looked up there many times seeing nothing, yet I had cancer. At first he was talking about CT scans, but when I told him I had no insurance, it changed to the pelvic exams every three months. I will have to see him in 3 months, this time I will be better prepared with questions. Can anyone tell me how often your followup visits are, and what they entail? Also, how often you undergo CT or PET scans? I cannot see not having some kind of scan at least once a year for the next couple of years. [/quote="rmaureen"]

I only have pelvic exams 3 monthly too - got one tomorrow as a matter of fact. Fingers crossed! I thought the same as you - how can they tell from that when it wasn't found by other means. Something must feel differently in there is all I can guess. I asked would I be having regular scans to pick up a recurrance early and he said no - just the internal exams. I've got medical cover etc so I don't think it's a money thing as to why they don't do that regularly- I think that's just the recommended treatment.

Cheers
Olly
_________________
Keep on keeping on.

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 96

Thanks Olly for replying, and I am praying you will get a good report back from this exam. I feel more at peace now; although I still dont see how they can perceive cancer cells (a tumor--yes perhaps) with the naked eye. I guess they must be able to detect something from these exams, otherwise, why subject cancer patients to them. Scanning would give me a greater peace of mind, but then again, I am ignorant of what is standard procedure concerning all of this. Take care now....

Rhonda

Olly

Well, had my a3 month follow up and I'm healing nicely and no new growth detected! Yay!

I asked about the "no scan - internal exam only routine" and my doc told me they can FEEL any new growth and also see it with the thing they use to look inside. Also, that a scan used in the VERY early stages wouldn't detect anything because it would be too small to pick up. So, depending on the type of tumour (aggressiveness etc), scans are only done every 6 or 12 months.

Hope this helps.
All the Best

Olly
Keep on keeping on!
_________________
Keep on keeping on.

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 96

Glad to hear the good news on your checkup! Thank God indeed!!! Thanks so much for your help. You hang in there, and keep us posted on how you are doing!

Rhonda

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