Newly diagnosed with a recurrent Endometrioid Adenocarcinoma

HFTG61

First, thank you all for contributing, listening, and encouraging.

I had a total laporoscopic hysterectomy in 2019 as a postmenopausal woman, after lots of bleeding, pain, and misery -eventually several biopsies found the cancer. It was stage 1a and my doctor did no other treatments after the surgery. I had been going for follow-up exams for the last two years. In late October I started complaining to my PCP, Urologist, and Oncology surgeon about a painful nodule to the touch in my abdomen. In November, right before Thanksgiving I insisted that the Oncologist help me figure out what's going on. I had a CT scan in December, right before the holidays. I was caught off guard when the remote results were made available in my records to be reviewed. I made the BIG mistake of reading the results. Not one mass but TWO were found and of considerable size! Fear and hopelessness invaded my thoughts. My Oncologist was out of the country until January, so now it was a waiting game. In the meantime I was scheduled for a biopsy. All this while contemplating HOW to brief my children and other family members. And the waiting only caused my thoughts to have me zone out from the world around me.

I did not plan on being so isolated around the holidays, but did not want to ruin any of my family's holiday plans. Though I slowly started reaching out to talk to a selected few because the emotional roller coaster was an enormous burden. When the biopsy was done - very painful! The results were ready that same night, but I had made a pact with my well-being NOT to click on it, open it, or read it until after my Oncologist's office reaches out to me to discuss in detail. Needless to say I did not hear anything until the following week, and at that time I was alerted to them still needing further clarification on "what specific type of cancer cells"! Being explained to me that its important for the plan of treatment. Another week of anxiety, fearing the worst, isolation, and solemn outlook as I waited for another clarifying phone call. In the meantime I read websites, reached out to my support of cancer survivors for questions, read my old labs and tests to understand what was happening to this body of mine!! This is when I became familiar with the American Cancer Society supportive website. Education is very calming.

I will be meeting with my Oncologist surgeon and treatment care team next week. I am in the process of trying to formulate a list of questions, trying to fight the restless mentality in order to sleep better, and keeping track of my increasing pains and other symptoms. Did anyone have lots of pain PRE-TREATMENT that you cannot distinguish whether its the TUMOR, Lymph Nodes, or possible small clot?? The nurse urged me to keep an eye on any clot symptoms - AND as soon as she mentioned that, I went into " PANIC" mode. Had to actual calm myself down with deep-breaths after the phone call. My heart rate was through the roof and I was all hot and flushed. Finally after about 20 minutes of deep breaths and a gallon of water, I felt much much better.

Harmanygroves

Oh, this sounds like such a stressful time! Most of us here know very well this feeling. I think it's great that you are able to do deep breathing and drink a lot of water to calm yourself. I have little tricks I use also, including grounding myself---I actually take of shoes and socks, and stand in the grass outside my house and feel the earth. I look up into the sky. It helps.

I'm also no stranger to appropriate medications--Lorazepam and CBD THC gummies. I know how tightly wound I am, and I look after myself because of that.

Sending you a hug. We're all here for you.

Maxster

There is a woman in my local support group who had recurrent uterine cancer. Same situation. Stage 1, no treatment but surgery. She has now reached her 5 year mark after treatment for her recurrence. I believe it was chemo. Just a positive note to share.

HFTG61

https://csn.cancer.org/discussion/comment/1692447#Comment_1692447

Whoa! My goodness, what a treat! I also love my barefoot in the cool, crispy grass. And enjoying flickers of sunshine vs shady trees in my yard in the summer . . . can't wait. Ty.

thatblondegirl

Hi! I’m sorry you’re having a stressful time. Miss Deb #2 is right about trying to have sweet moments to ease stress. Tightly wound…yeah, I’ve been described in that way! I, too, am no stranger to helpful medications! But I’m very careful with them, so much so that several times during my treatments doctors and nurse said to me, “TAKE the Xanax!”

I can’t help with recurrence information, but there are many here who can.

best, best wishes and prayers to you

😎, Alicia

chol6860

I’m brand new here also - like you, I had a complete hysterectomy in 2019 for endometrial adenocarcinoma which was graded stage 1a. No treatments except surgery and follow ups. Bleeding came back and was diagnosed with recurrent tumors (4) and am halfway through the 6 chemo cycles ordered by my cancer care team. CA125 numbers have gone down to almost normal levels and symptoms (pain and bleeding) have disappeared for the most part. I’m taking that as a very positive sign and as nervous and fearful of the chemo as I was before treatments - if it’s working it will be well worth the side effects and aggravation.

Hope you have a very productive meeting with your care team and have all your questions answered.

Reaching out for support is a VERY positive thing - good luck with your treatment.🥰🙏

mkmilburn

Hello! I had the same thing happen. 2020 surgery/no treatment and staged 1a. In October had a CA125 done and it came back high. CY revealed tumors 1 of significant size. I'm undergoing chemo right now (Taxol/Carboplatin). Next week is my 3rd treatment. My doctor also mentioned immunotherapy as a possible option. We were all floored when I received the results. The doctor even said that if he didn't order the test he never would've thought anything. I also received my results before the doctor. It's. Horrible way to find out. I am so sorry you had to go through this as well.

chol6860

https://csn.cancer.org/discussion/comment/1692591#Comment_1692591

I’m on carbotaxol as well. We’re on a similar treatment plan and almost same timing for chemo. Hope you have great results from yours - I’m thinking positive on mine - just feeling soooo tired all the time. Want to get back to feeling like myself again and know that will probably be quite a while down the road. Immunotherapy is on the table if needed for me too.

mkmilburn

Thank you! I hope you do too. I feel super tired and muscle pains for about a week. I seem to be ok after. I am finding I have very little motivation to do anything. That may be tiredness. Do your tastebuds get all ruined as well? I have a few days of lousy taste.

chol6860

https://csn.cancer.org/discussion/comment/1692596#Comment_1692596

Yes my taste is messed up for several days after chemo. Then I start craving all the stuff that’s bad for me 😂 - greasy take out fries and burgers, ice cream, etc.

mkmilburn

https://csn.cancer.org/discussion/comment/1692629#Comment_1692629

Yes!!! Exactly! Super craving bad for you stuff. I love salad and right after even the thought of it makes me sick. So bizarre.

chol6860

Me too! I’ve been eating lots of salads to help get my blood test numbers right but can’t do it right after chemo.

mkmilburn

I'm going to try smoothies. Fruit has been a go to at any point. That's a good thing. I'm overweight to begin with so I really need to avoid the bad stuff. But the cravings are strong.

chol6860

Have been checking out smoothie recipes - my hubbie was diagnosed with type 2 diabetes in 2018 so we cut smoothies out of our diets but thinking I may need to rethink that now. Fruit and greens are so important to the diet now.

mkmilburn

I have Type II as well, but even with smoothies my A1c was really good the last time. I do fat free yogurt, banana, loads of berries, and kale or spinach. Oh, and almond milk. I use mostly frozen fruits except for the banana. I read in multiple places that frozen actually have more nutrients because they're frozen immediately, while "fresh" are already losing by the time they hit the stores.

Lyn70

https://csn.cancer.org/discussion/324648/newly-diagnosed-with-a-recurrent-endometrioid-adenocarcinoma

I am so glad you have come to be with us.

I cannot imagine receiving such news via a phone call during the Holidays and with your Oncologist out of town! Holy Cow!

I totally get your PANIC mode and the roller coaster ride your emotions are on. Hold tight onto that metal bar on the big hills! You tell me the symptoms of anything, like a blood clot, and I will have it. Look up symptoms on Google University and I will have the disease. .. Now, the reality is most of that 'information' does not apply to any of us at all.

I take Lorazepam for anxiety.

Please let us know how your appointment goes next week.

((Hugs))

cmb

https://csn.cancer.org/discussion/comment/1692647#Comment_1692647

I applaud anyone who works to maximize or improve their diet during treatments. But I felt so awful during my "phase two" chemo treatments that food preparation was the last thing on my mind, despite actually liking to cook. I've written before how I practically lived on plain grilled cheese sandwiches during this time because they were fast to make and didn't disagree with me. Not a healthy choice, but the best I could manage then.

I found it interesting that my A1C taken about a month after chemo ended was the lowest it had ever been since before I was diagnosed with Type 2 diabetes years ago. For a while my motto was "Get cancer – cure diabetes" but unfortunately that didn't last for long!

Lyn70

I had a similar experience as cmb. My weight and A1C were better than they have been in years during treatment. Likely contributed to weight loss during treatment. My appetite was minimal.

Appetite is back post treatment and I am struggling to stay in control again.

mkmilburn

https://csn.cancer.org/discussion/comment/1692843#Comment_1692843

I totally understand what you are saying. I just want to go to comfort food. So far fruit has been very doable, especially bananas. The week following treatment definitely have no desire to cook. The other 2 weeks I've noticed I'm actually craving fruits and sandwiches. 🤷‍♀️ I am trying to do simple grilling and sweet potatoes for dinner. Ha, last night my husband asked if I can make chicken parm. I just looked at him and said, "No!" Lol. I felt badly and explained it's a process and I'm tired. Grilled chicken it was.

my glucose has been high (for me). I've been testing 140's-150's in the mornings. The chemo nurse thinks it's the steroids and my primary wants to do an a1c before she increases my Metformin. We'll see what happens I guess.

HFTG61

My Oncologist decided to start me on carpoplatin and paclitaxel. I am getting a port on Monday, found out the treatment center may pre-treat my body with steroids to help the chemo process. Not ready for any of this news and the probable side effects they reviewed with me.

Can anyone please be straight with me about this port (difficult to sleep) and the effects of the steroids and chemo drugs on my already borderline high blood pressure and diminished red blood cells ( been taking B12 injections for the last 18 months). I am making sure I continue to ask doctors all the questions that I possibly can, but most answers seem to be " every case is different". On Monday I should also find out what day my treatment will start.

mkmilburn

Hello! The port is simple and no problem at all. I sleep on my stomach and it's just fine.

best of luck 😌