Roll call for Endometrial Adenocarcinoma any stage

I just want to thank everyone who sent notes of support on this and other threads. My first treatment went fine yesterday. Port worked well. Only effects so far have been restless legs (pretty bad), some pain on the soles of my feet (but not really tingling or numbness), and slight nausea this morning. I'm taking my Zofran religiously as a preventive measure. I know this isn't the thread for this kind of comment, so thanks for bearing with me this time. 

Hi I just joined this board although I have been reading it for awhile. Had surgery in June of 2015 which could not be done robotically as surgeon hoped due to the size of my tumor which was determined to be a grade 3. Completed six rounds of chemotherapy and four brachytherapy treatments on Dec. 19, 2015. Gratefully had a scan in March and lung and thyroid nodes were not enlarged from previous scans nor had anything new appeared! In the mid 80's had most of my thyroid removed due to a malignant tumor but did not need further treatment after that. Small piece of right thyroid was left and that is where the thyroid nodule is, but had that biopsied in Dec. 2015 and it was not malignant so the doc's are just watching it for now. So grateful that I found this board because there is so much information here about the disease and treatments. Also since my doctors seem reluctant to show any encouragement (told me this type of cancer reacts similar to ovarian and very likely will reoccur) and that my treatment is not considered to be "curative" I am relieved to read some of your stories. Will be having my six month scan in a few weeks and am working on not becoming anxious. If I let myself go there I tend to think of avery ache or pain as a bad sign. Thank you all for your encouragement and information that is on this board!!

Beachrose said:

IV B adenocarcinoma with papillary serous features uterine

 

Hi I just joined this board although I have been reading it for awhile. Had surgery in June of 2015 which could not be done robotically as surgeon hoped due to the size of my tumor which was determined to be a grade 3. Completed six rounds of chemotherapy and four brachytherapy treatments on Dec. 19, 2015. Gratefully had a scan in March and lung and thyroid nodes were not enlarged from previous scans nor had anything new appeared! In the mid 80's had most of my thyroid removed due to a malignant tumor but did not need further treatment after that. Small piece of right thyroid was left and that is where the thyroid nodule is, but had that biopsied in Dec. 2015 and it was not malignant so the doc's are just watching it for now. So grateful that I found this board because there is so much information here about the disease and treatments. Also since my doctors seem reluctant to show any encouragement (told me this type of cancer reacts similar to ovarian and very likely will reoccur) and that my treatment is not considered to be "curative" I am relieved to read some of your stories. Will be having my six month scan in a few weeks and am working on not becoming anxious. If I let myself go there I tend to think of avery ache or pain as a bad sign. Thank you all for your encouragement and information that is on this board!!

 

Beachrose - you are in good company here. Seems that we all suffer from some level of scanxiety but it all comes down to how we react once we feel it creeping in. Fighting it doesn't seem to work for me. I just try to accept that my body is reacting to this thought I am having then calmly try to breathe deeply 10 times, smile gently and relax. It doesn't always work but when it does, it really makes a difference. I hope you give it a try. Good luck to you and please don't ever give up hope! Kim

TeddyandBears_Mom said:

Welcome Beachrose. Please

Welcome Beachrose. Please continue to reach out for support. We are here for each other!

I just had my 6 month scan. I'll get the results on 7/5. While it is easier to say than do... I try not to worry about the results. It just isn't worth it to speculate. I think we all tend to pay attention to all of our aches and pains and have to talk ourselves down from time to time. So, my mindset is that I am and will continue to be disease free and won't dwell on any other thoughts unless I'm told otherwise.

I'm glad you officially joined us!

Love and Hugs,

Cindi

Thank you Cindi for your encouraging and welcoming words! I really like your mindset and will work on developing my own mindset (somedays it is good others not so much). I am very greateful that I have progressed to this point without any new occurances. I will be thinking about you when you get your results on the 5th and praying for good news for you.  So many strong women on this board.  Hope you enjoy the holiday weekend.

Love and gratitude,

Barbara

unknown said:

My Dr doesn't do scans

So no scanxiety for me!  Of course, I sometimes think that is probably bad that I don't know what (or doesn't) lurk in my body, but I'm happy for now not knowing.  Beachrose, welcome, my doctor said pretty much the same about this type, it pretty much recurs, but after I finished chemo he said we will watch for symptoms, and that he has other treatments available IF it should come back.  He told me to take the summer off and see him in August.  Hugs Nancy

Thank you Nancy for the welome and glad no scanxiety for you this summer! It is confusing regarding the scans my doctors have different opinions on them also regardig how often to do them so it is hard to know which way to go. Did you have any scans after your treatment was completed? My surgeon has told me to watch for any symptons that are not normal or usual for me but honestly after the surgery, chemo, and radiation nothing in my body feels normal or as it was before.  Hoping this post does not appear multiple times as I have posted it a few times but it did not seem to work.

Again thank you Nancy, Barbara

unknown said:

I've not had any scans

I was diagnosed by an in office biopsy, sent to a gyno/oncologist who reviewed the path report and said cancer, and he did Da Vinci surgery.  I didn't have a scan priior to the surgery, nor have I had one since.  I've only had one CA125 blood test, taken after my 2nd chemo, and he said he doesn't do those either for follow up.  I'm also just on the watching for symptoms (& probably waiting) schedule of seeing him every three months.  Hugs Nancy

My gyn/onc has the same philosophy - go for a pelvic exam every 3 months and watch out for symptons without scans. This has been somewhat distressing to me since I've felt like all preventative measures to discover a recurrence are not being taken. However, I read on a group somewhere, wish I coud remember where, that a member commented that scans were not of much value to her with her type of cancer since  she had CT and PET scans which did not show anything while her gyn/onc found the recurrence on her vaginal cuff with his speculum. At my next 3 month pelvic I will ask my gyn/onc if he can see things with his speculum that the scans can not. I'm new to this and its very interesting and making me feel better about his approach.     Susan 

GoodLuck15 said:

Yesterday I had my 1st

Yesterday I had my 1st anniversary CTScan and am still NED!

 

I was diagnosed in January 2015 with Stage III Grade 3, mixed type with metastasis to the right ovary. After open-abdominal surgery the next month, nothing was found in 31 lymph notes or in the pelvic wash. Presurgery CA-125 was 33.

 

For a number of reasons I declined chemotherapy and started working with a holistic doctor in changing my diet/lifestyle, adding mistletoe and weekly IV vitamin C. My CA-125 has dropped to 5 (getting tested every 2-3 months) and my scans have been clean so far. Best of all, I feel terrific.I totally get that my choice is not for everyone and so I am in no way recommending that others do this. It is a deeply personal decision that has involved numerous factors.

 

I held all of you in mind and heart last night when I attended an event at the local Tibetan monastery. The program focused on, among other things, blessings to help all of us remove obstacles -- and extend our lives. It felt like such a fitting end to a joyful day. My best to you all this year! 

 

GoodLuck5

Wow, that is great news. I was diagnosed stage III, grade 2, on May 9, 2016 after a total hysterectomy. Am contemplating chemo, but my gut says no, try the holistic road. I wonder if chemo leaves behind cells that develop a resistance to it, and come back stronger?  No one can say for sure, and there are no truly reliable tests to run for evidence of a real cure. Thanks for sharing, I find your story very hopeful.    Wendy

wendybru said:

yesterday I had my 1st

GoodLuck5

Wow, that is great news. I was diagnosed stage III, grade 2, on May 9, 2016 after a total hysterectomy. Am contemplating chemo, but my gut says no, try the holistic road. I wonder if chemo leaves behind cells that develop a resistance to it, and come back stronger?  No one can say for sure, and there are no truly reliable tests to run for evidence of a real cure. Thanks for sharing, I find your story very hopeful.    Wendy

Hello, Wendy.  I saw your other post wondering why some people have recurrences and others to fine - I think that is one of the eternal questions we just don't know the answer to.

Everyone has to do what they think is best for themselves when it comes down to treatment.  A lot of women have worked with naturopaths with current treatment regimens.  If you choose holistic I would just recommend you do your research.  Sadly there are plenty of people happy to take advantage of individuals who feel desparate for a cure, and their only motive is money.  

Personally I wanted to do everything I could do to beat off the beast and whle I try to eat well, I also chose the conventional chemo/radiation routine.  

Wendy, have your doctors left the decision up to you, or what are they recommending?

P.S. My TAH was the same day as yours.