Had TAH 3 weeks ago for stage 1B grade 2 Endo cancer

Denise, I would suggest calling to get something to help with the anxiety right now.  It is overwhelming, and what you wrote brought me right back to my memories.

I am on the thin side and I did not want to eat.  I lost weight before my surgery and then after surgery I continued to not want to eat.  I had a friend who made me a pot roast, and I forced myself to eat because my friend had made me food.  I did tell myself that I needed to eat to heal, so I did continue to work at that.  

Also, please know that statistics out there are old, and you are a statistic of one.  No one knows what your odds of it coming back so try to focus on fighting the disease and getting stronger. 

Hi, I can relate to your journey in that I had bleeding for about a year, went to a few different Dr. s that just put me on medicine (I was 51), I finally had bright red blood that I knew was not right, got into a gyno, she did a biopsy, it was cancer, I then went to a oncology gyno and had a complete hysterectomy, followed by chemo and 3 brachy therapy sessions. (I did not get a 2nd opinion because I felt she was doing everything that needed done)  It does no good to look back at "what if". Just take one day at a time. I am a Christian, so praying and my faith is what helped me and still does (I am 14 months cancer free). I am 5'3 and was weighing around 110, got down to 103 (way too much) the day after surgery, then got back up to 113 during chemo, and I stay around 110 now. I am a fitness instructor so I stay active and try to eat well (80/20 rule). If I can help any other way to encourage you, feel free to message me. 

Denise66 said:

Thanks so much for responding

Thanks so much for responding.  

Everyone is saying you me I caught it early.  Well, I should have caught it much earlier .  Like 1 year.  I know I can't focus on that.  I'm healthy today and I know that's what matters.  But I can't stop thinking about if it was caught earlier. 

 

Doc offered radiation bc of the 86% penetration .However after researching g it does not increase survival.  Doc agreed and put on 200 mg of progesterone for 6 months. Has anyone taken that?  

 

Also did anyone get a second opinion from another pathologist?  If so, did it differ?

 

 

 

 

 

Denise, I am sorry you are experiencing the totally normal/rational fear that comes from hearing your diagnosis and wondering whether your treatment has been successful and whether you will have a recurrence.  And I don't know that what I will report to you will calm your fears...I suspect not.  But I do want to say that I share your diagnosis of endometrioid adenocarcinoma and that I was staged at Stage IC, Grade II.  That was 12 years ago and I have been treated twice more, at approximately 5-year intervals, for a distant metastisis, so that I guess I am now considered at Stage IV.  I don't mean to suggest this will happen to you.  I know I did not have a "gold-standard" sentinel node resection in 2005 (the few harvestd were clear), but I did have external beam radiation after surgery.  My first recurrence was to a right-side para-aortic lymph node with scattered lesions in my lungs (the distant metastisis).  That was treated with radiation (successfully) and high-dose progesterone (400 mg daily of Provera, a differenct formulation than Megace).  In 2017, I was found to again have small lesions in my lungs.  I underwent chemotherapy for the first time.  Again, apparently successfully, as I am still here and feeling well a year later.  You may wish to obtain a second opinion on your pathology and the recommended post-surgical treatment plan.  If you get a second opinion from a trusted source, that may help allay your fears about whether you are pursuing the course that seems right to you.  There are no magic bullets and part of your treatment may well include some counseling to help you better accept your diagnosis and the fear/anxiety that naturally comes with it.  This is not easy.  I can't imagine there is a woman on this board who has lived some years with this disease that doesn't harbor fear, some are better at handling it than others.  So, try to gear up the courage to satisfy yourself that you have the best analysis of your histology/pathology and that you obtain a qualified opinion on the pros/cons of various adjuvant therapies and then pick one, including watch and wait, that you believe is in your best interests.  It's a lonely search and decision, but you do have a supportive community here to listen and comment.  Best wishes, Oldbeauty

Hi Denise,

I was diagnosed with stage 1C, grade 2, endometrial adenocarcinoma in April 1999, when I was 51.  The staging system for endometrial cancer has changed since then, so there is no longer a stage 1c in the current staging system, but I was 1c due to the fact that my tumor had invaded approximately 80% of the myometrium.  I had internal and external radiation.  Besides the deeply invasive tumor, I also had extensive lymphvascular space invasion (LVSI), a lower uterine segment tumor, and my tumor was approximately 4 cm. 

Before diagnosis, I had spotting for at least 7 months.  I delayed seeing a gynecologist because I thought my symptoms, which were intermittent, were menopause-related.  When I finally did see my gyn, she too assumed that my symptoms were due to menopause.  However, she did an endometrial biopsy and endometrial cancer was found.  My gyn was more surprised with the diagnosis than I was.  Like you, I suffered from a lot of anxiety, especially because I delayed in seeking medical attention.  Because my anxiety was interfering with my ability to sleep and function, I saw a mental health professional who prescribed Ativan.  I'm not a big fan of medication, but I've come to believe that there are certain times in life that it is necessary and, for me, that was one of them.  If I can give you any advice, which I know will not be easy to follow, don't beat yourself up too much about the delay.  Try to focus on moving forward and making sure that you obtain the best care to ensure that you have the best chances for a good long-term outcome. 

I sought a second opinion on my pathology and have always been glad I did, because it confirmed that all 30 lymph nodes my gyn-onc removed were clear, among other things.  As far as radiation, I would recommend you seek a second opinion on whether it would be in your best interests given your particular risk factors.  I haven't read the recent studies because I am 19 years post-treatment, but the older studies I read at or near the time of my treatment did show some survival benefit in certain subgroups of stage 1 patients with certain risk factors.  However, due to the design of those studies, the survival benefit in those subgroups was not statistically significant. 

Best of luck to you, Denise.  Things will get better the further out from treatment you are. 

MoeKay

Denise66 said:

Hi Lori,

Hi Lori,

I just re-read my path report:

Stage 1b

Figo 2

No LVSI

Size 5.5 x 4.5

Negative peritoneal wash

Myo invasion 86% .Doc thought tumor was less than 50% during surgery However, there was a very small part of the tumor that projected further.

When I spoke with my doctor he agreed that radiation my reduce reoccurance but it does not increase survival.  I have a follow up with to further discuss.  

What ongoing side effects did you have from the radiation?  Also, I will be 4 weeks out from my surgery on Friday and still bleeding very lightly.  My paperwork from the doc says it could last up to 8 weeks. What was your experience? 

Also, how soon after your surgery did you have the radiation?  As far as the chemo, since you had negative nodes was it standard of practice to do chemo for stage 1C and Figo 2?

Hi Denise66, 

I think that I would experience “pinkish” discharge noticable on toilet paper occasionally for months after my hysterectomy. The reason was because not only surgical healing time but I had radiation (both external and brachytherapy ((internal)) about 3.5 months after surgery. I started chemo I think about 5 weeks after surgery. I had a vascular port implanted in my chest and had chemo that same day. I had what is referred to as a “sandwich” protocol for chemo and radiation. I started chemo of carboplatin/Taxol every 21 days x 3. Then I had the radiation 5 days a week x 26 sessions us the brachytherapy. Then 3 more cycles of chemo. 

The internal brachytherapy radiation had direct contact with my cervical cuff. My mucous membrane tissues in the vaginal vault are paper thin due to radiation and lack of estrogen. 

I sometimes still can wipe hard and irritate my tissues I think. 

If you go to the NCCN.org website you can create an account (free) and see the standard protocol for chemo and radiation by cancer type, stage and grade. My treatment followed the NCCN guidelines. I found that website the most concise for protocols by stage and grade. Remember my cancer was 2B so more advanced than yours but not outside of my uterus other than it had grown into part of my cervix.

There may be side-effects from radiation both short term and long term. Once you get radiation in an area they typically as I understand it won’t use radiation in that area again. The Radiation oncologist reviews the possible side effects and probabilities. My biggest issue was extreme fatigue towards the end of radiation and also burning upon urination. Aquaphor ointment  protect sensitive tissues and with the completion of radiation I had no further burning. The radiation also may create a side effect that increases the urgency of when you need to have a bowel movement. Like when you need to go you really need to go. That can be a lifetime change. Surgery, chemo and radiation has all taken a toll on my body in different ways but I have a high level of functioning so no complaints. 

Hope the above sharing is of some help to you as you move forward with your treatment. 

Lori