Recently Diagnosed with Uterine Cancer

CheeseQueen57 said:

Hi Staci

We've all been through what you are going through now.  I'm your age. I was diagnosed with Stage 3c, Grade 3 uterine cancer in March 2016 and completed my frontline therapy in October 2016. Try to take one day at a time. Find you the best gyn/onc you can. You're right, they can't Stage you until after surgery. We'll be there for you through your journey. I'm sure other more eloquent sisters will be jumping in soon. You are not alone. 

Hi CheeseQueen57.  It is nice to meet you, even though it may not be under the best of circumstances.  It is nice to know I am not alone and there are others like yourself that understand what I am feeling and going through.  Are you now cancer free?  Was going through the therapy used to treat you very difficult?  While I was told it is believed my cancer was found at an early stage, I know there is no way of knowing as an absolute fact until the surgery is done and I am staged.  I am not only afraid of the surgery, but of any treatments like chemotherapy since just the thought of it makes me nauseous, but I am just going to have to take one step at a time and hope for the best.  Thank you for writing since I really do appreciate it and will be in touch.

MAbound said:

Take a breath

Hi StaciLynn! So glad that you found us, but sorry that you needed to. This forum was a such a big help to me when I was where you are last year. The information, understanding, and support here really helped to calm me down and get me through what I had facing me and hopefully we can do the same for you. It's overwhelming, but doable.

The first piece of advice, besides researching the gyn/oncologists available to you like Cheese Queen recommended, is to start getting copies of any records generated as you go along and to have someone to go with you to your appointments to be your 2nd set of ears and memory. There's going to be a lot coming at you when you aren't necessarily going to be in the best place emotionally to absorb and retain it all. Take them right into the exam room with you and let the dr's know that they're your advocate. They will most likely welcome such a person being there for you.

Secondly, take a moment and just breath. It's going to seem like you aren't getting answers or treatment fast enough and waiting for appointments and results won't be easy. It's the norm, though, so prepare yourself for that and use the time to just live your life in the meantime. 

Good luck to you and remember this is a safe place for you to come with anything you need.

 

Hi MAbound.  I have been trying to do exactly what you suggested in living my life as best as I can as the waiting process begins.  First it was waiting to hear the results of my pelvic songoram, which I found out about pretty fast, but then it was waiting to have my D&C scheduled, since there were a few delays along the way until that way done. I was so sure everything was going to be okay after that, but then I got the call that everyone dreads hearing.  I followed through with going to my GYN, getting a copy of my records and spending some time going over the report with him, as he explained in detail what the patholigy report meant to me.  I am scheduled to meet with a GYN/Oncologist the beginning of September, so there will be more waiting until I see him, but I know this is a process and it is going to be a journey that will not happen overnight.  It is nice that I found this forum where I could get the chance to talk with others who have been though what I am first going through now.  I actually started looking for support groups almost immediately after getting my diagnosis and as fortunate that I was able to find this one and am happy I am already getting responses to my introduction that I posted.

Lou Ann M said:

Hi, Stacilynn

welcome to the club no one wants to belong to.  You have found a great places to come to.  The ladies here are great with advice, information and support.  This is also a place to come when you need to vent.  Everyone here will listen.  Like others have said, take everything one step at a time.  Waiting is a big part of this game, waiting for tests, waiting for,results.  You will surprise yours of with how strong you are.  What every happens, there is always hope.

Hugs and prayers, Lou  Ann

Sorry, I spelled your name wrong as I raad back my letter to you since I meant to type Lou Ann, but sometimes I type too fast and make mistakes when I type, although even using spell check, it won't always pick something up, especially if it is a name I am spelling wrong.

Kvdyson said:

I am so sorry to hear of your

I am so sorry to hear of your diagnosis. I recall being in your shoes. It is a very scary time but please know that you will have all the support that you need from us. 

What kind of hysterectomy will you be having? Mine was a "TAH-BSO" with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal after the surgery.

The type, stage and grade of the cancer tumor will be very important to know. My final diagnosis was uterine carcinosarcoma, stage 1b, grade 3. There are many different types of uterine cancers.

The information about the tumor will determine your treatment plan. My front-line treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment at the end of May 2016 and had my first clear scan showing no evidence of disease or "NED" in June 2016.

 

At this early stage, I recommend that you consider collecting copies of all your pathology and surgery reports for your files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

Also, consider taking a recorder with you to appointments or find out if your cell phone has an app to record them. There may be a lot of important information discussed and you don't want to miss anything. I listened to my recordings again a few months afterwards and realized that I had missed some very important things the gyn-onc had said at the time.

I hope this information helps you. Good luck to you. You can do this and we will be here to support you! Wishing you peace and strength, Kim

Hi Kim.  Thank you for the advise you gave me.  It was very helpful as I realize because of my emotional state, I may miss things or not understand certain things that are said to me.  When I went to see my GYN on Friday and went over my report, I took my husband with me becasue I felt someone should be with me with a second set of ears to I understand and interpret everything correctly.  From what I was told, this was an early catch and it is believed my cancer was detected at an early stage. I never had bleeding, which is uusually present, even in early stage uterine cancer, but the reason why further tests were done was because my endometrial lining was way too thick.  My GYN feels I am a good candidate for a laproscopic hysterectomy, but ultimately the decision will be made or at least presented to me by the GYN/Oncologist I will be seeing on September 1st.  I know some people feel an abdominal surgery is the way to go, but of course if possible, I prefer to have laproscopic surgery if possible, as long as the doctor feels I would do well having the surgery this way based on my initial patholgy report as stated from the D&C that I had.  I know I won't know for sure about needing further treatment until a pathology report is done after my surgery, but the thought of chemothearpy really scares me more than most people can imagine.  Did you get sick from the chemotherapy treatments you had to undergo?  I absolutely hate throwing up and actualy have an intense fear of it, so the idea of possibly needing chemotherapy as part of my treatment really scares me, not to mention just fearing that my cancer could have spread, even though the doctor seems pretty confident that it hasn't but there is no way of knowing for sure at this point.  I know if any abnormal cells are found in even one lyphm node, that would mean having to go through chemotherapy and I really don't even like thinking about that right now. On the positive side, it is wonderful hearing your scans are totally clear and you are cancer free.  I know this type of cancer has a pretty good cure rate compared to other types of cancer and hope you continue to have clean scans and good health.

hopeful56 said:

Hi Staci:

Hi Staci:

My name is Sandra and I am new to this support group too.  I had a similar situation as you, just started to spot one day and went through the same tests.  I am now at home recovering from my hysterectomy.  I just had it Wednesday.  I am just glad to have that part over with.  I am able to get around a little sore, motrin is really working for me.  I had the robotic procedure.  All I know so far is my sentinel nodes were clean.  The final pathology will be in 3 weeks.

When I first got the news, I was scared and anxious.  I had already started to reseach all about uterine cancer.  What I can suggest is when you see the surgeon oncologist, get all your questions answered, but most of all feel confident and secure that you can trust them with your life.  After I  met the surgeon I felt more at ease  and was ready for the surgery.  

The ladies on this support group have really given my strength reading their stories and sharing their experiences. 

Know that you will get support from the wonderful ladies on this support group.

Sandra

 

Hi Sandra.  I bet your are relieved that your hysterectomy is over with and that your sentinel nodes were clean.  I hope your final patholigy report comes back clean as well and can imagine how anxious you are to hear the news.  In my particular case, I never had any spotting, which is an early warning sign of uterine cancer.  I was getting some aches and pains here and there, but didn't think much of it, but my doctor knew enough to have me undergo both an abdominal sonogram and pelvic sonogram, which eventually led me to have a D&C, which revealed I had uterine cancer.  Is the robotic procedure done abdominally with the use of special machines to assist in the operation? I know there are different ways of doing hysterectomies and I am still not sure which way mine will be done.  I have had gall bladder surgery and two c-sections, so I know the pain in recovery from any type of abdominal surgery, but a hysterectomy is a whole new ball game, yet I guess it all depends on how it is done and what the patient's pain tolerance is.  Anyway, good luck with everything and please let me know what your final patholigy report is. I will pray that it all comes back clean and you don't need any further treatment, but it is nice to meet you and appreciate you writing.