Recently diagnosed with Stage III Uterine Cancer
I was recently diagnosed with stage III Uterine Cancer; I had a complete hysterectomy 2 and a half weeks ago and I am scheduled to meet with the medical oncologist for information regarding starting chemo in the next two days. Being diagnosed with cancer was a total shock for I have been seeing my gynecologist yearly for post-menopausal bleeding. All of the studies that had been done were negative and it was determined that the problem was from my bladder. I am so scared for I do not want to die, and I am not sure how my body is going to react to the chemo.
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hopeful, it is very scary and overwhelming so please try to take a breath. You have found a place of support.
Chemo, while difficult is often described by many of us here as "doable". You'll surprised yourself of what you can do but please do not hesitate to post questions. Many get a port to make it easier rather than get poked every time you go since that can be hard on you and your veins. They will give you hydration and the different chemos (carboplatin and taxol are the most popular so far) and they will monitor you throughout.
I don't tell you this to scare you, you want to get prepared. I think there is a thread pinned at the top of this page that has a lot of good tips from all the women throughout the years.
Please let us know what questions you have.
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Thank you so much for taking the time to leave a comment. I greatly appreciate it. According to my surgeon I will have six treatments as well. I am scheduled to meet with the medical oncologist on Thursday for more details.
I wish you the best as you go through this and thanks for the encouragement.
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Hi dear hopeful66. I had the port placed one week before my treatment. I was told it can be done closer to the treatment day or on the same day, but I opted to do it sooner, which was the best decision for me. My arm was sore for days, so i cannot imagine do it on the same day as the treatment.
How are you today? Did you meet with the doctors and did they tell you the treatment plan?
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hopeful, I did not have a port. I thought, "it is only six rounds" and I can tell you I didn't know then what I know now - at all. After my first chemo I told the nurse, "we'll have to remember that site for next time" and she told me know, chemo tends to make your veins hard which makes it hard to find one for subsequent treatments.
The 3rd round was really hard to find, and since I had the sandwich of chemo/radiation/chemo, I think the radiation was enough of a break to give my veins a rest so I ended up not getting one. Again, what I didn't know (and didn't know this wonderful site with the support existed) and know I just got incredibly lucky with my doctors.
Thank you @madieblue for addressing the timing. I wouldn't be surprised if others are along to chime in with their experience.
Keep your questions coming. I remember to this day those feelings of being overwhelmed - it is a lot to get hit with. You are not alone.
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I had my port inserted the day before my first chemo. I had to keep it from getting wet before chemo since it was left with a "lead" ready for the chemo infusion the next day. The area was sore for a few days and it did take me a bit of time to get used to having it in, but I was grateful to have it during the infusions. Not only did it save my veins, but it made moving around during infusions much easier.
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You can do it :) You can survive stage III. I am 4 1/2 years out from treatment for stage IIIa.
I had paclitaxel and carboplatin, 6 rounds. I didn't have a port and they always got a vein without missing. However, one time the carboplatin infiltrated a bit at the end of the infusion, and caused a bump and red forearm that took over a month to go away.
But ... although they always got a vein for chemo, my veins ever since have been hard to get, and they always used to be easy. I've had quite a few CTs sinve then, and they always have to try multiple times for the IV :(
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Thank you all for your comments, This has helped me to be prepared and aware of the process. I did see the medical oncologist today and he is recommending carboplatin and taxol. He will then add avastin during the second treatment. I am waiting to get a port placed and then the chemo treatments will start. I will also have the white blood cell treatment placed on my arm after each chemo treatment which is one treatment every three weeks. This seems to be the norm. Is that correct?
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Hi, I completed my first chemo session last Wednesday; Yay!! I felt really good until Friday. Then I was not able to move by bowels for two days and I experienced diarrhea for four days. I ended up dehydrated and I had to get IV fluids yesterday. I am not sure if this is the norm since our bodies respond to chemo differently. But if anyone has had this experience, can you share what you did to keep this from being a recurrence after the chemo treatments.
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Hi, hopeful66
You’re so right that all of our bodies react differently. I had problems with dehydration, also. So hard to keep fluids going down!
As to your recurrence question, you could get a million different suggestions as to diet, exercise, etc. I take Zejula, which is an immunotherapy drug to prevent recurrence, but I am not the norm on this board because I was not technically a uterine cancer patient. I had Fallopian tube cancer with secondary peritoneal, so Zejula is appropriate for me because it is prescribed for woman like me & ovarian cancer patients. Some of our friends here have taken other drugs, but they would need to tell you about it! And a lot depends on your genetics and pathology reports.
Hope you continue to be OK!
😎, A
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Unlike many other women here, I never experienced constipation after surgery, chemo or radiation. But I was plagued with diarrhea throughout my treatments. My oncology nurse gave me specific instructions to follow on taking Imodium (loperamide) at more frequent intervals each time I had diarrhea, until two hours after the last episode of the day. While it didn’t eliminate the episodes, it did end them much sooner each time.
But it’s tricky since you’re having both issues. Ask your doctor or nurse about what they recommend you do after chemo to reduce the diarrhea and constipation effects. Hopefully they’ll have good advice.
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I am super new to this site and to this issue. I am here for my Friend who had robotic hysterectomy Oct 3rd , ‘22 and has U1A carcisarcoma . She goes Oct 14th for the “plan”. Where is the port usually placed and how soon will they recommend chemo…also I can’t locate the “pinned” thread with tips…
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I’m sorry to hear that your friend has been diagnosed with cancer. There is an older, but generally still relevant topic noted in the FAQ above about chemotherapy that may be helpful right now. https://csn.cancer.org/discussion/296461/ladies-going-through-chemo-how-are-you-doing-or-those-just-starting-or-curious/p1
You can also search for more recent discussions on women going through chemo as that is a frequent topic here. Your friend will find out more about which chemo the doctor will be recommending at her meeting next week, but Paclitaxel and Carboplatin are typically used when treating uterine cancer.
While not everyone develops neuropathy from chemo, some women here have also tried “icing” to reduce the chance they’ll develop this condition. See https://csn.cancer.org/discussion/322196/icing/p1 for some threads about this process.
Ports are placed below the collar bone. If you search online for “chemo ports” you’ll find pictures that show this placement. The port is usually inserted within a few days of when chemo will start. The chemo start date depends upon how well the patient is doing after surgery, but 4-6 weeks after surgery seems typical here.
If she has been diagnosed with carcinosarcoma, this is one of the rarer forms of uterine cancer. Therefore, doctors usually treat this aggressively, even in women with stage 1A. So when you read other posts from women with the more common form of uterine cancer, they may not have had chemo or later treatment with radiation that are typical for women with carcinosarcoma.
It’s a difficult process for anyone to go through cancer treatment and the support from family and friends is really helpful. I’m sure your friend is glad of your help right now (and will continue to be during the coming months.
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I am sorry for ALL of us gif going through this hard time. I had Stage IB endometrial cancer last June. I had a total hysterectomy and 5 brachytherapy . The crap returned this May. I had a debuliking surgery and now doing Carbo+Taxol+Keytruda. It's tough but I want to live and will do anything to see my son getting a family on his own and have children.
my problem now after the second round of chemo is the neuropathy. My oncologist doesn't recommend icing only Glutamine and vitamin B6. It doesn't do nothing for me. Anyone has a tip or advise how to manage the neuropathy?
i appreciate any suggestions. Thank you.
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I didn't try icing during chemo since I didn't know about this technique. And I didn't develop neuropathy until after my last chemo infusion. But other women here have reported neuropathy symptoms much earlier in process.
I know that some women have had to change one or more of their chemo drugs due to side effects, including neuropathy. Here are links to a few topics where this was discussed. I’m sure there are other posts if you search this board.
https://csn.cancer.org/discussion/comment/850245#Comment_850245
https://csn.cancer.org/discussion/comment/1642796#Comment_1642796
https://csn.cancer.org/discussion/comment/1645866#Comment_1645866
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Thank you so much for all of the information. It is so great to be with others who have gone or are going through this. I am so encouraged each time I log on and your words about doable kept resonating in my mind during the rough times. Thanks again to all of you who share your experiences.
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Many docs and institutions are not formally pro-icing. My docs at Mayo rolled their eyes, but I was provided icing mitts once I pressed them. It was not well received by the medical community in 2018 when I was being treated. Anecdotally, there are many of us who did icing and most of us are glad we did. I initially had some neuropathy after chemo in my hands and feet, which has resolved. For most of us I would say we thought "what harm is there to icing?" I would have done anything to lessen the long term side-effects of chemo, I didn't care that they frowned upon icing. As far as I can see, there is no harm and possibly could save one from a long term neuropathy issue.
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