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Old 06-21-2009, 04:02 PM   #1
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Angry Hi, update on uterine cancer after the surgery

Hi all who have looked at my story on here. I wanted to give everyone an update on my condition. After the radiation I decided not to do the chemo and take alternative things and juicing. I passed my first cat scan in Feb. and felt very well, as you know if you read my original blog I was left with a lymph node that was bad. They radiated to to pieces and I was pretty burned in especially that area.

I wanted the drs. to do a pet scan this time. they told me the insurance company would refuse it unless there was a reason. I felt that a good reason was that I was left with a lymph node that was bad and spewing cancer cells into other parts of my body. Well, I had to have the cat. Last week after waiting a week I went to find out the results of the scan.

I sat in that chair and waited while the dr. looked at my results. First thing he asked me is if I ever smoked. I thought that was a strange thing to ask me, but I am so dippy sometimes I didn't connect it with anything. My daughter who was with me asked him why did they find something? He said yes, we both almost fell apart when he said that. He told us that they found a 1.3 cm node and another one he didn't tell me what the size was in my right lung, and in the left lung a shadow. I have been so devastated since he told me that. I was so hopeful that with all the radiation I was going to be well. He told me the only treatment for lung cancer was chemo. He was happy that the kidneys, liver and spleen were good. He never mentioned the colon where it was attached too, either he didn't want to say anymore or there is nothing wrong. I tried to call the office to get my report to read it myself and I just keep getting the run around. So, I don't know anything yet.

I am going to get that pet scan now. The insurance company balks at giving the pet because it is expensive. I paid 350 for chest, 350 for abdomen and 400 for pelvic cat scan, 100 for medicine, and 35.00 for who knows what. That is a total of over 1,250.00.. how much will they save now since they have to dothe pet scan anyway. The pet scan is 1,400.00 big deal 200.00 more. Now they are really out some money. I should have known better, but I have had so many people praying for me and I felt better too. I hope that it will turn out okay, I will keep everyone posted on how this turns out. thank you all who have read my blog and if you find time say a little prayer for me. Thank you all.

 
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Old 06-22-2009, 01:13 PM   #2
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Re: Hi, update on uterine cancer after the surgery

Hello Dear,
I am so sorry to hear your latest news ... I was reading your earlier posts after my aunt was diagnosed with uterine cancer that had spread to her cervix earlier this month ... hers is also estimated to be at stage 2, possibly stage 3. She weighs about 390 pounds, and her first doctor didn't want to do surgery due to her size and said he couldn't find anyone to do radiation on someone her size, so she tried another doctor who also came highly recommended for a second opinion and other possible treatment options.

The new gynecological oncologist reviewed the results from the previous doctor's testing and said she didn't recommend surgery right away, that she thought we should start with radiation and maybe consider surgery after that, and then see if chemo was needed. But at least she said their hospital could treat her radiation, and could also do the surgery if needed. My aunt went last week to the new doctor/hospital and had an MRI and a PET scan done and got the results this past Friday. The doctor said it does not look like there is lymph node invovment yet, so now she is recommending we start with surgery, follow up with radiation and then see if chemo is needed. I think she has to go back for one more consulation with the new doctor before they will schedule the surgery. I'm just getting anxious to get started with her treatment, but I'm also very nervous about the surgery, even though I know it will help give her a shot at fighting this. The initial research I did on treatment/survival rates was so scary I had to stop and just put my faith in God to see our family through this. All I can do is trust in God and know that we will do all we can to care for my aunt and get her the best care possible. I read with great interest some of your herbal/natural suggestions and will definitely look into those for my aunt as we move forward on this journey.

Like you, I'm infuriated that I work as hard as I do, pay a LOT of money for insurance every month and am constantly dissapointed with the coverage we receive, even though we have a good medical history and try to be proactive about staying healthy. My daughter was born prematurely 8 years ago and spent a month in the NICU and had heart surgery, and I spent a great deal of time and energy dealing with insurance issues and advocating for my daughter's care.

I'm glad you had your daughter with you for your appointment and that you have good family support to help you ... and I will keep you in my prayers! Stay strong and keep the faith!
Take care,
Shelle

 
Old 06-24-2009, 06:07 AM   #3
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Re: Hi, update on uterine cancer after the surgery

Hi Shellbelle,

Thank you for emailing me. I feel so lost sometimes. I have met a kind and wonderful friend on here that talks to me through emails. She carries me through when it gets bad for me. I do so appreciate having someone to talk to other than family.

Thank God that there is no lymph node involvment on your aunt. That was my problem after the surgery, the dumb doctor didn't think anything was wrong and left it. Probably didn't matter anyway, it was in there and doing it's work. After the radiation on my lymph node I developed lymphedema which no one told me would happen. It is painful and you have to rub the area to disperse the fluid build up or you are in pain in the area. Evidently it builds up.

My sister had cervical cancer when she was in her 20's and they gave her a complete hysterctomy and she is still alive 35 years later. They did no radiation or chemo on her at all. I am so glad that you are there for your aunt. She probably needs you more than you will ever know. Sometimes I feel so alone. I have a husband, but he has lost everyone in his family to cancer and he blocks most of it out with me. He is trying now, but he is taking me for the pet scan today. He will sit outside though and wait, he won't go in. It is too hard on him. He is the only one left in his family of adult people.

I don't care and it shouldn't matter what you weigh to get treated and taken care of. I was overweight too. After the radiation I lost weight. The radiation will make you sick to your stomach and you will throw up. I had a wild ride to the er the first night because they said I wouldnt have any after effects. Take a bucket with you lol. They do have medication to keep you from being sick. Depending on how much radiation they will have to do. I had a lot of treatments though, 38 of them. I felt like someone had punched me in the stomach all the time. It was winter time and I just curled up in a ball after each treatment. I had to go everyday for the treatment. I haven't had chemo yet, but it looks like I will have to have it if this comes out the way they think. I probably should have had it. I had a lot of faith in the alternative stuff, and I think it worked where I had the original cancer, but some of the cells probably got out ahead of the radiation. I am still taking the alternative stuff. Except for today. I can't have anything but water today, it will be a long day till 2:30 p.m. Then 2 hours for the test, I expect to have a headache soon. LOL.

I did the same thing, I looked up treatment and survival and it looked like I would be dead in a few months according to their scales. It has been 9 months and I am still here. One thing is your attitude. If your aunt has a great attitude and is positive she will do well. The fact that it is not in the lymph is a plus. I was a stage 3C and that is pretty close to a 4, so I knew it was going to be tough. Yes, do trust in God that is who carried me through most of the time. Every night and every morning I asked God to heal my mind my body and my soul and then I asked him to take the cancer out of my body and throw it far away. Evidently he threw it at my lungs lol.

I want them to hurry up and give me the treatments too while it is summer and easier for me to get out. We live in the country and get snowed in a lot. Plus I get lung infections a lot.

Please keep me posted on how your aunt is doing and I will continue to post on here about how everything is going with me. The insurance companies are the biggest scam artists around if you ask me. They make it almost impossible for anyone to get help with their refusals of tests. If I had the pet scan instead of the cat scan I wouldn't have had to have the pet scan now. They need to find a cure for cancer, but I feel there is too much money in it for the drs. Some of them, but not all. It would actually free up some time for them to go play golf or spend time with their families if they found a cure. I am hoping that the president will follow through on his promise to make sure we have that cure.

Please keep me posted on your aunt.

santee245 or Carolyn

 
Old 06-26-2009, 05:12 AM   #4
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Re: Hi, update on uterine cancer after the surgery

Santee I am so sorry to hear of your setback. Have not been on the site for a while as all seemed to be going well so this is a shock. Stay positive, a setback is all it is....how dare it... Am many miles away but all the good thoughts and vibes go to you.

 
Old 06-27-2009, 04:30 AM   #5
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Re: Hi, update on uterine cancer after the surgery

Hi,
Thank you so much for your well wishes. I am still hanging in there, the shock of a relapse was pretty hard on me. Especially to go into my lungs. The lamebrain dr. left that lymph node and that is probably where it came from. I have been trying to find a lawyer to sue him. No one wants to take my case I guess. It is a case of scratch my back and I will scratch yours. I just want him to see what he has done by not listening to women when they come in. We know our bodies and we know when something is wrong. Quit laughing it off and take it seriously.

I had the pet scan this week and while being strapped down and unable to move the electric went out and I was stuck flat on my back for 45 min. while they fixed it. They could not get me out. They had half of me done, but when they got it turned back on they had to do it all over again. They weren't sure if they got it. They also are not sure the radioactive dye was still good enough after that amount of time and told me I might have to have another one. I was in that thing for over 2 hrs. and when I got up my back hurt so bad. This place is a brand new cancer treatment place in our small area. You would think the electric would work.

I am hanging in there till the results come back. I only have till Aug. to bring a suit against the dr. after that I am out of time for it. I guess I should have started sooner. I will keep everyone posted on here when I find out. I am praying that I will be okay, but it doesn't look like I escaped those lymph nodes. He should have taken them out.

Again my message is to all women, if you feel something is wrong go to the dr. If he doesn't help you find another one. You know your own body better than they do. Don't let them lull you into believing that it is "just menopause". It might be, but it is better to get it checked out especially if you have any family history.

I thank everyone for their support of me. I am hopeful that I will be okay. I probably will have to do the chemo tho>

 
Old 07-09-2009, 02:16 PM   #6
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shellbelle HB User
Re: Hi, update on uterine cancer after the surgery

Santee,
Hope you are getting by alright. My aunt went back for the results of her MRI/PET scan and they believe that in addition to starting in her uterus and moving into her cervix, there is also a spot on her abdomen. She goes in for surgery this Monday, July 13, and they will do a hysterectomy and take a closer look at the abdomen ... the surgeon thinks the area with the spot can be removed. I'm not sure what they're going to do with the lymph nodes ... I don't recall from her last consult if they found any lymph node involvement from the scans, but I hope that as long as they're in there for the surgery they take them out. The oncologist said having it spread to the abdomen makes it stage IV, so her diagnosis is worse than before, but we're just going to take it one step at a time and get her through the surgery. Then we'll move on to six weeks of 5-day a week external radiation treatments, with one internal treatment a week added, and after that they want to start chemo.

I continue to pray for you and hope you will all keep my aunt in your thoughts as she faces surgery next week.

Take Care!
Shelle

 
Old 07-20-2009, 05:43 AM   #7
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Re: Hi, update on uterine cancer after the surgery

Hi Shell,
Sorry to hear about your Aunt, I can tell you that whatever they tell you to do for her jump at it. I am sorry to say that I had the radiation first after my surgery and I think I should have had the chemo. It has spread to my lungs and a lymph node by my heart. I am doing chemo now, but I fear it is too late. The drs. don't give you any outlook on how long or even if it is worth fighting for. The chemo has made me very sick. They do it one day every 3 weeks on me. I get cisplatin and adriamyacin. The cisplatin is very toxic to me. I had to have a port put in my chest so they didn't ruin my veins and so they say poke me too much and make it harder for them. I am in the 3rd week of the first treatment. This is the second day where I can really eat anything, there is no taste to food at all. I developed thrush in my mouth and some sores which go along with this chemo. I had to be rehydrated 2 times because I couldn't eat or drink for days afterwards. They told me that I had to force myself. The reason I am telling you this, while I can is so you can know what to expect with the chemo, they give you a teaching, but nothing is like the real thing. But, it has to be done. My children have begged me to keep going and just try the first three cycles. I can quit if I want, but they will be very upset with me for not doing it. The radiation is bad too Shell, make sure she gets something for nausea before the very first treatment. They told me that I wouldn't need anything for the first treatment, don't believe it. I was so sick I had to go to the hospital. Depending on what area they radiate, (I had quite a wide path on me) she will feel weak and wobbly. I felt like I had been punched in the stomach by a prize fighter. I did not lose my hair during radiation. I expect to lose my hair on this chemo. Write to me anytime you need to, I will answer anyone that has a question. I am going through this right now and if I can get one woman to realize that her dr. is not a saint and makes mistakes I will feel like I have helped all women. Be aware of any little thing that goes wrong with you and if the dr. does not listen go find another one. I am one of those people that takes her clothes off in the dark after 37 years of marriage. Comes from the old days where we were told that sex was bad and dirty and if you exposed any parts of you that you were easy. I think, not sure, somewhere from my childhood probably.
Shell, you are a wonderful neice, your aunt is very lucky to have the support of her family. I am lucky to have a wonderful daughter, friend and sister. Husband is coming around, but cancer runs in his family and he is frightened to death of the very word as I was. By now your Aunt has had her surgery, I tried to email you and I hit the wrong button last time and then I lost the site info. I found it again. Let me know how she is doing and if she has any questions. Don't let her give up! I know how easy it is to do that. I will pray for her too, thank you so much for keeping me in yours. Carolyn

 
Old 07-24-2009, 01:57 PM   #8
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Re: Hi, update on uterine cancer after the surgery

Carolyn,
Hope you are doing well today. My aunt had her surgery last Monday, July 13, and did fine during the procedure and recovery, but she is still in the hospital because she's not able to keep food down and is very sick to her stomach. They had to put her NG tube back in and once they get that resolved, she can come home, but she's still struggling with it. She also developed a couple of small blood clots in her lungs, but they gave her heperin and that seemed to take care of it. The doctor came and reviewed the pathology with her on Wednesday and it was about what we expected, stage IV due to the involvement of the cervix and abdomen. Her medical team agreed collectively that she should do radiation and chemo simultaneously ... it sounds like her course of treatment will be very similar to yours ... external radiation Monday through Friday for six weeks, with an internal radiation treatment added one of those days each week, and the chemo will be once every three weeks and I think they're going to put a port in. How long is your course of chemo treatment to last? This was the first time the doctor talked about the prognosis not being very good ... like 5 percent 5-year survival rate ... but those are just numbers and everyone is different so we're just going to encourage her and care for her and see that she has whatever she needs and wants. I know she is scared, but she wants to try to fight and do the treatment. I can't imagine how sick she might be doing both at the same time, but I admire her greatly for facing this head-on. She is not married and doesn't have any kids ... she and my mom are sisters and are incredibly close so myself and my three siblings have been like her children all these years. One thing that surprised me about her surgery is that they did NOT take out the lymph nodes ... the doctor said from the scans that there DID NOT appear to be lymph node involvement, and these scans DID show the spot where it had spread to on the abdomen ... I don't see how it couldn't be in the lymph nodes at this point, but I guess it's possible. My mom thinks the surgery was so involved with what they HAD to remove that they opted not to take out the lymph nodes and lengthen the time she'd be under. So I'm not sure about that, it just makes me nervous.

Well, I hope you are doing alright and that the weather is as nice for you in Ohio as it is here in Southern Illinois. I continue to keep you in my thoughts and prayers ... let me know how you are doing when you have a chance.
Take Care,
Shelle

 
Old 07-27-2009, 05:44 AM   #9
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Re: Hi, update on uterine cancer after the surgery

Shell,

I wanted to get back to you quickly, I have my next chemo on Wed. It makes me very sick and sleepy. It is a very tough road, your aunt is so lucky to have all of you. One of the things that is major with me, I hope not for your aunt is the nausea even after the chemo. The pills you get help during treatment, but the nausea still continues and the pills cause constipation. I hope they will tell you all that before she starts. It was a major problem for me and still is after the 3 weeks. I had to look it up online to see what the side effects of the emend and the other medicines they were giving me.

Sounds like she did well during surgery, good for her. I am glad they resolved the blood clots in her lung too. I worry about the heperin, they had some bad stuff from china a few years ago. I hope they are not using it on us. They still use it when they flush the port after any kind of treatments. They love to use that port, I don't think they realize that a needle or something still has to go through the skin and if they do it a couple times in a week you are definitley sore there. I have decided to have all my blood draws from my arm as I can handle them there better than the port. Remember Shell, she is in charge of everything they do to her and if she doesn't like it or want it it is her choice. I go along with practically everything. I did become very dehydrated and couldn't drink, I still can't eat. I have to force myself, food tastes like cardboard or something else can't pin it down yet. No will to eat here. My sister is coming from Arizona to spend time with me and go through a treatment with me. I am hoping she can get me to eat something.

I was qualified as a stage IV also, he told me because it had spread to a lymph node in another spot. I don't understand why they didn't take out the lymph node either, but if they get the internal radiation close to them hopefully that will take care of it. I didn't get internal radiatiion. Back woods here. Treatment that is. I got 38 treatments of radiation, treated everyday I could make it in except the weekends. Oh how I waited for those weekends. She is going to feel very bad, probably worse if possible than me,, because I didn't get the chemo at the same time. I should have gotten the chemo first. They have not given me any length of time on the chemo. He said he will do 3 treatments every 3 weeks and then a scan to see if they are working. Well, I can tell you the losing your hair part is working. Cut off my hair last week and now will have to go for the down to my head look with a hat. It is coming out in chunks, that is the hardest part.

Shell, I will be thrilled to make it the 5 years. In that 5 years the might find a cure for cancer and we can live out our lives without a struggle everyday. When you go to the dr. ask him about the lymph nodes and why they didn't take them out, they can not tell from just looking I don't think, not sure on that. Tell your aunt that I am pulling for you and I know what she is facing, I am praying for her too and as long as she has her family and a good attitude she will do good. That is what they told me. Hard to have a good attitude when you feel so bad though lol. What kind of a scan did they do on her? Was it a pet scan? If they did a pet scan on her it would show up in the lymph nodes if it was there. I would ask them, if it isn't there, then she has a lot better outlook. Did they say where in the abdomen?

Yes, the weather is nice here, kind of a cool one though for Ohio. We live on a farm and the crops need sunshine to grow. Your weather is probably about the same as ours.
Thank you for keeping me in your thoughts and prayers we never have enough of those do we? Carolyn

 
Old 10-02-2009, 05:05 AM   #10
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Re: Hi, update on uterine cancer after the surgery

New to the board, but wanted to say hi. I will pray for you. I also have uterine cancer stage 1C grade 2. Will start radiation as soon as I'm healed from my hysterectomy. I have no idea what radiation will be like. I have to do it though. Many prayers and if you know about radiation for Uterine Cancer would you please let me know what it's like. please? Thank you so much and many thoughts for you.

 
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