Recently diagnosed with Endometrial cancer

Mss Tayler '84 --

What a horrible situation you are facing. I wish I could wave a wand for you, but right now, you're dealing with so many hard things. I was dealt a very sad hand also, and never had my own children. I do have two stepchildren. I think that it's very disappointing for many of us who can't even have one baby. It was for me. I can't gloss it over. It's hard. I think you may need to get someone for some counselling, and I strongly suggest you try to find a resource for that.

Ugh, and just lost a job? The only bright lining here is that things can only get better for you. You did so well finding your way here! That's the good news.

I was also concerned about having the hysteroscopy / biopsies / polypectomy and then having the other surgery (total hysterectomy, etc.) so close, but because both were laparoscopic, it made it much easier. As much as I've complained about my first surgeon on here, he did a robotic laparoscopic-assisted surgery, and it's an easier recovery than an "open" surgery (a laparotomy).

Sending you love, and great compassion. You are in the hardest part of things right now. We will all be here for you. 

(edited to fix spelling of 'compassion,' but I wanted to note that I was delighted that Forherself pointed out you might be able to keep the uterus, at least for a while. I want to add that I have a friend in her late 30s who recently froze many of her eggs, and another lady will carry the child for her. I think it's also worth considering!)

Deb

misstaylor84 said:

Adenocarcinoma

Found out what the name of my cancer is. It's endometrial adenocarcinoma, grade 1. My OBGYN put me on 40mg Megestrol, which I have read has been very beneficial for treating this cancer. I am still just waiting to get an appointment with the gyn oncologist. I'm applying for Medicaid tomorrow. I have also been reading about the process for freezing eggs and don't think that would be an option because we have no reproductive endocrinologists anywhere near us and it said it requires multiple trips. 

Right now there's so much to think about.

You sound like a very organized person. I think it's great that you are applying for some assistance.

No one wants any type of cancer, but if you must have cancer--endometrioid adenocarcinoma grade 1 is probably the best one to have. It's the kind I have, and I was Grade 1, Stage 1 B but have a high risk of recurrence because of some other factors.

Many of the ladies here have much more aggressive cancers---in terms of "type" of cancer and also grade. Grade 1 is slow-growing. It's not a good thing, but you are only 37, so I have to admit I'm relieved it's Grade 1. Whew. 

Okay, I'm sure you have a lot going on, just wanted to check back in and wish you the best of luck. There is a really GREAT FAQ page that is the top thread here. You may want to look through that? 

Deb XXOO

misstaylor84 said:

Adenocarcinoma

Found out what the name of my cancer is. It's endometrial adenocarcinoma, grade 1. My OBGYN put me on 40mg Megestrol, which I have read has been very beneficial for treating this cancer. I am still just waiting to get an appointment with the gyn oncologist. I'm applying for Medicaid tomorrow. I have also been reading about the process for freezing eggs and don't think that would be an option because we have no reproductive endocrinologists anywhere near us and it said it requires multiple trips. 

Right now there's so much to think about.

are doing clinical trials for fertility preservation.  https://mdanderson.elsevierpure.com/en/publications/fertility-sparing-treatment-in-early-endometrial-cancer-current-s

Fertility-sparing treatment predominantly involves the use of oral progestins and levonorgestrel-releasing intrauterine devices, which have been shown to be feasible and safe in women with early stage EC and minimal or no myometrial invasion. However, data on the efficacy and safety of conservative management strategies are primarily based on retrospective studies. Randomized clinical trials in younger women and high-risk obese patients are currently underway. Here, we have presented a comprehensive review of the current literature on conservative, fertility-sparing approaches, defining the optimal candidates and evaluating tumor characteristics, reproductive and oncologic outcomes, and ongoing clinical trials. We have also summarized current guidelines and recommendations based on the published

She is one of the co-authors of this article. You might want to consider getting a 2nd opinion from her as she seems to be doing potentially game changing research on this. 

BluebirdOne said:

I follow Dr. Westin and many other GO on Twitter.

There is a large group of them on a list so easy to follow. They are all over the world and the US, many from MDA, MSK, etc. and NCCN cancer centers. They will post about protocols, clinical trials, research, and about the annual conferences where new research is presented. There is a podcast by Dr. Pedro Ramirez (MDA) called IJGC Podcast, where they discuss all things gynecological cancer. (very nerdy, I admit, but having cancer makes you research like a nerd) The podcast titled "Phase II Trial of IUD in Conservative Management of uterine cancer" with Dr. Westin is available to all, was posted 12 days ago, so is very recent information. The other topics are of varying interest. Sometimes the podcasts that pertain to me (I don't listen to ovarian or cervical cancer pods) are a bit wonky, but they give an overview of what the leading GO are doing, thinking, researching, etc. I just remembered that she had a podcast on this subject as well, as I don't usually pay attention to pods that don't involve my situation. 

Denise 

And oh, yes. Yes, having uterine cancer does make one research like a nerd.

My current fixations today involve the hormonal issues that made my endometrial adenocarcinoma blossom forth. I have a very "secondary ed" understanding of it. These are factoids I think are correct, but may not be:

a. many post menopausal women lack progesterin, but have an overabundance of estrogen.

b. estrogen can be "fed" by excess body fat, or rather, body fat increases estrogen in the body, which causes endometrial adenocarcinoma (in part).

c. endometrial tissue growth continues, but isn't sloughed off via menstrual cycle following menopause. Female body out of control! Cue the "tissue growth" music!

d. endometrial adenocarcinoma shows some genetic mutations, which I've got in paperwork--and I don't know what to do about them yet. This bothers me. I hate knowing that I don't know, and knowing that I don't know how to figure it out--in part bc I ditched my first gyn onc, who didn't answer my questions anyway (I'm now laughing, kind of).

* * *

I am grateful for every woman in here. I learn from every single person. Today I'm at the Oregon coast, and it's a beautiful day. I walked 9K steps, and had about an hour of "active minutes." I've decided I'm going to eliminate some fruit in exchange for more vegetables. 

Denise, you're wonderful!

love,

Deb

Harmanygroves said:

Fortunate Happenstance for Many That You Have Nerd Tendencies!

And oh, yes. Yes, having uterine cancer does make one research like a nerd.

My current fixations today involve the hormonal issues that made my endometrial adenocarcinoma blossom forth. I have a very "secondary ed" understanding of it. These are factoids I think are correct, but may not be:

a. many post menopausal women lack progesterin, but have an overabundance of estrogen.

b. estrogen can be "fed" by excess body fat, or rather, body fat increases estrogen in the body, which causes endometrial adenocarcinoma (in part).

c. endometrial tissue growth continues, but isn't sloughed off via menstrual cycle following menopause. Female body out of control! Cue the "tissue growth" music!

d. endometrial adenocarcinoma shows some genetic mutations, which I've got in paperwork--and I don't know what to do about them yet. This bothers me. I hate knowing that I don't know, and knowing that I don't know how to figure it out--in part bc I ditched my first gyn onc, who didn't answer my questions anyway (I'm now laughing, kind of).

* * *

I am grateful for every woman in here. I learn from every single person. Today I'm at the Oregon coast, and it's a beautiful day. I walked 9K steps, and had about an hour of "active minutes." I've decided I'm going to eliminate some fruit in exchange for more vegetables. 

Denise, you're wonderful!

love,

Deb

produces a substance that changes into estrogen.   Estrogen does not cause endometrial cancer or every overweight woman would have endometrial cancer and they don't.  Most cancers are random mutations which our body deals with often.  When the mutation involves the mechanisms that stop. cancer cells, then cancer cells proliferate.  The distribution of cancer is quite random across the world.  Some things increase your likelihood, but they do not cause cancer.  Mutations in the cancer fighting genes cause cancer.  I have not read that endometrial tissue continues to grow after menopause, but some conditions might cause that.  Do you remember where you read that?  Gyneoncologists go to University for about 14 years to gain the expertise to treat cancer.  It will take awhile for you to understand it all.  Don't beat yourself up.

Harmanygroves said:

Fortunate Happenstance for Many That You Have Nerd Tendencies!

And oh, yes. Yes, having uterine cancer does make one research like a nerd.

My current fixations today involve the hormonal issues that made my endometrial adenocarcinoma blossom forth. I have a very "secondary ed" understanding of it. These are factoids I think are correct, but may not be:

a. many post menopausal women lack progesterin, but have an overabundance of estrogen.

b. estrogen can be "fed" by excess body fat, or rather, body fat increases estrogen in the body, which causes endometrial adenocarcinoma (in part).

c. endometrial tissue growth continues, but isn't sloughed off via menstrual cycle following menopause. Female body out of control! Cue the "tissue growth" music!

d. endometrial adenocarcinoma shows some genetic mutations, which I've got in paperwork--and I don't know what to do about them yet. This bothers me. I hate knowing that I don't know, and knowing that I don't know how to figure it out--in part bc I ditched my first gyn onc, who didn't answer my questions anyway (I'm now laughing, kind of).

* * *

I am grateful for every woman in here. I learn from every single person. Today I'm at the Oregon coast, and it's a beautiful day. I walked 9K steps, and had about an hour of "active minutes." I've decided I'm going to eliminate some fruit in exchange for more vegetables. 

Denise, you're wonderful!

love,

Deb

When we share our information we all win. 

Denise 

misstaylor84 said:

Next Steps

I am going on the 19th for an MRI and depending on those results, that I won't know until the 30th, will dictate which treatment route we can take. She isn't against doing the fertility sparing treatment which will be continuing taking Megesterol and getting a hormonal IUD put in. 3 months after the start I will have a biopsy done to see where we stand, then at 6 months another hysteroscopy and D&C, a new IUD put in, then I'm guessing a biopsy at 9 months, then another hysteroscopy and D&C at 12 months. 

If I'm cancer-free for 12 months following this 12 months of treatment she will refer me to a reproductive endocrinologist. The only one is in Little Rock. 

I have been reading about how painful the IUD is and I'm sure the biopsy is just going to be a fun little experience too. I am not looking forward to any of this pain at all, and 2 more hysteroscopies. I seem to have taken longer to recover than everything I read about hysteroscopies because there is no way I could have returned to my normal activities 24 hours after. I still had tender, bruised areas 2 weeks after. But I research everything because I hate surprises and I have to know the worst and I plan for the worst. I have never had an MRI so am nervous about how panicky that might make me feel. 

I am still trying to get health insurance and holding off on looking for a job until after we find out what our next steps are. I am trying to take everything day by day but am still scared and anxious.

Anyone else decide to go the route I'm wanting to go to save fertility? How bad is the IUD and biopsy? 

I started losing pregnancies around your age, and I sincerely hope you do better than I did. Just gather all the information that you can, and if I can give you any advice, it would be to keep positive.

I lost a few years in my late thirties feeling very depressed about not being able to have children, and I regret not pursuing counseling. Maybe it would be helpful for you and even your husband too to find someone to talk to as you go through this very challenging time.

Love,

Deb

misstaylor84 said:

Trying to stay positive

I am trying to but the more I know, the more scared I get. Yesterday was a terrible day. I just couldn't handle anything, didn't want to be near anyone, and just wanted to either cry or burn something down lol. I got a letter from the unemployment office and apparently someone told them I had quit, when in fact I was laid off. They wanted to know why I had lied. That, and some other personal things popped up, and I simply couldn't take anything else. I definitely think talking to a counselor will be a good thing for both of us. I am up at 4am because I simply can't sleep. Too worried about the MRI and then everything to come after that. So much pain. I feel like I have endured enough pain for 10 people and honestly I am pissed off. Why did this happen to me? I look at obese women I know who have diabetes and they still managed to easily get pregnant. For years I fought to get my sugar down, my weight down, I tried charting my temps, every other thing that was recommended and nothing worked. 

Now I hear "Well it's not a big deal, just get a hysterectomy" from women who have already had several kids. I feel like punching them in the face and screaming that of course it seems so easy to someone who was able to have kids. If I already had kids then I probably would do the hysterectomy just to save myself more pain down the road. 

I hate this hand I've been dealt. Absolutely hate this. 

My husband means well and has been a huge help when I was recovering from my hysteroscopy but he won't let me clean our house. We've been living with my parents and brother because our house has mold in the kitchen and needs a lot of work currently. But just to sit and watch TV all day without having anything to do is making me go stir crazy. I told him I have cancer but it's not going to kill me to do stuff around the house. I want to get it fixed so I can go back home. We are still trying to get health insurance but since I was laid off we've been struggling. He's going to take a local job and a pay cut so he can be here for my appointments. We may end up and lose our car because we can't afford the payments now but we need it because all my appointments will be 2 hours away in Little Rock. Now the delay with unemployment.

It's just too much. 

I'm going to do what I did for myself----I'm going to try to give you heartfelt advice. You can crumple this up and throw it in the virtual trash if you like, but you're young and I'm worried about you. First, my story, then you. 

After my hysteroscopy, I was doing dishes, folding clothes, and dealing with NO electricity during an ice storm. After four days of cooking (with a cast iron skillet outside, in freezing temps), I got into my car and drove to the Oregon coast where I have a rental house with electricity and heat. I was at that point having a total breakdown, and as you can guess, needed a shower. My recovery was non existant because of the Oregon storm. Listening to the trees crash down as I sat in pain watching was so miserable.......but back to you, Miss

You need to do something other than watch TV, for sure. First move: contact your old job and calmly talk to them, and plead your case. You need them to work with you.

Also, you need to take good care of yourself, even if it's a short walk and eight glasses of water per day. I get the emotional piece, do I ever. But now is the time to be healthy.

Pull yourself away from this anger and sadness and set some goals fast. Do it for yourself. Do it for your husband. You can, and you must. 

Love,

Deb

Deb has given you some good suggestions on moving forward right now. I just wanted to add that my treatment center had a number of services for cancer patients and survivors. I only took advantage of the exercise classes while I was in treatment, but they offered many other services including counseling, social work services (to help with insurance/Medicaid matters, financial assistance, support groups, etc.) These services were free.

I encourage you to reach out to your doctor's office to see if your hospital/treatment center offers similar services. A cancer diagnosis can throw anyone off kilter, but you may have more help available than you realize. And be sure to tell your doctor how you're feeling. The doctor may be able to prescribe an anti-anxiety medication that would help you at this time.