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

Denise66
Posts: 56
Joined: Aug 2018

I'm totally over whelmed.  Thought I was having Peri menopause heavy bleeding.  Delt with it for 10 months.  Was treating with a naturopath for 6 months to balance my hormones. Well, since it did not work went to MD who dx Endo cx. 

Had my TAH 3 weeks ago.  Doc took 9 nodes which were all clean. From the anxiety of it all, I had totally lost my appetite.  Prior to surgery I was 126 pds. Today, I'm 119 pounds. I'm really concerned with my weight loss. I have very little energy too.

I'm so over whelmed and scared over the entire thing . I'm 51 years old. I live across country from my family.  I have a couple of good friends but they really don't umderunder the anxiety I'm having.  Any help with the following would be greatly appreciated:

 

1. Anyone loose weight after their hysterectomy? I must say, I cut out all sugar and sugar less gum after my dx. I would have lots everyday.

 

2. How did you gain weight?

 

3. How do you cope with the fear that comes with a cancer diagnosis?

 

 

 

Kathy G.'s picture
Kathy G.
Posts: 202
Joined: Dec 2012

Hi Denise and welcome to the board. I think you will find tons of support & information from the ladies here...visit often and scroll through the postings.

I had the opposite issue regarding weight as I was very obese when diagnosed. This is often the case with some types of uterine cancer. I did not have as hearty an appetite after surgery, but I had no real loss of appetite. I eat when upset...it sounds like you might go in the opposite direction!

 

I did have weight loss surgery 3 years after my diagnosis to improve my health. Many women here change their eating habits after diagnosis and to gain or lose weight.

In terms of dealing with the anxiety of getting cancer we all have practiced different methods...anxiety meds, yoga, meditation, prayer, family, friend, religious or other support options.

Sometimes just knowing where you stand relieves alot of the fear and anxiety! Has your doctor discussed treatment with you? You seem to have caught it fairly early. One thing someone on here used to say that helped me was that cancer isn't a death sentence disease anymore...it is very treatable!

 

Come back and ask questions, vent or rant and rave. We are here for you!

 

Kathy

 

Denise66
Posts: 56
Joined: Aug 2018

Thanks so much Kathy!

Yes when I'm stressed I don't eat which hopefully is causing the weight loss 

I'm really beating myself over this dx because I should have went to a doc that october.  Having a lot of should haves right now.

I think I do need something for anxiety as it is paralyzing at times.

 

Also, I'm not sure about my doc. He says I have a 10% chance of reoccurrence at 85 to 90% change of survival.  When I looked at the ACA website, it had a 1b survival at 75%. 

 

I had 86% invasion and tumor was 5.5 x 4.5.  I hoped docis being honest with his stats for me.  

 

Denise66
Posts: 56
Joined: Aug 2018

Thanks so much Kathy!

Yes when I'm stressed I don't eat which hopefully is causing the weight loss 

I'm really beating myself over this dx because I should have went to a doc that october.  Having a lot of should haves right now.

I think I do need something for anxiety as it is paralyzing at times.

 

Also, I'm not sure about my doc. He says I have a 10% chance of reoccurrence at 85 to 90% change of survival.  When I looked at the ACA website, it had a 1b survival at 75%. 

 

I had 86% invasion and tumor was 5.5 x 4.5.  I hoped docis being honest with his stats for me.  

 

Kathy G.'s picture
Kathy G.
Posts: 202
Joined: Dec 2012

Denise...the anxiety is part of the territory with this. Talk to your doctor if you think you need help managing it.

I would take a zanax everytime I had an appointment because my anxiety would build days before going in.

I actually thought I had a very bad UTI prior to diagnosis. I had blood in my urine, but was 3 years post menopausal. I kept going back for antibiotics and it would clear...then come back. Then I passed a huge clot and knew whatever going on was gynelogical.

There are several types of uterine cancer. Some are more aggressive than others and that determines treatment, chances for reoccurence and other factors.

Many ladies more educated than I will suggest you limit online research bc it is very outdated. And statistics aren't that helpful bc we all are different and respond different.

That being said you can always get a second opinion, but dont let statistics get you upset or even overconfident. Cancer creates a 'new normal' for most of us where any new aches or pains can scare us. Be vigilant about your health, take care of your emotional needs as well as your physical and medical.

YOU WILL BE OKAY!!!

 

I am sure other ladies will be along soon with their input.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2574
Joined: Mar 2013

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. 

Denise66
Posts: 56
Joined: Aug 2018

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?

 

 

 

 

 

oldbeauty
Posts: 189
Joined: May 2012

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2574
Joined: Mar 2013

Denise, not all uterine cancers are the same.  Some of them need everything thrown at it, others just have the complete hysterectomy, some are best treated with hormones.  (Some uterine cancers are fed by hormones, so that is not an option for those ladies).

If you are dealing with a gynecologic oncologist, they would know the best treatment for each type.  

Denise66
Posts: 56
Joined: Aug 2018

I am treating with a gyno oncologist in Pheonix, AZ.  Would the path report tell me the exact type of cancer?  It says adenoma carcinoma.  Did you seek second and or think opinions?  

Thanks so much .

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2574
Joined: Mar 2013

Denise, I did not get copies of all my tests, etc. Some women here have, it is just a choice.

It looks like you have the most common type of uterine cancer.  

https://www.myvmc.com/diseases/uterine-cancer-adenocarcinoma-of-the-endometrium/

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

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
Posts: 56
Joined: Aug 2018

I'm so happy that you are cancer free!  I'm estatic for you!

 

Thank you so much for your kind response .  The looking back is hard because I should have known better. I have a Master's in Nursing. However, my sister went through the same bleeding pattern.  She had a biopsy and no cancer was found .she had the ablation .I honestly thought I would have the same course of action. 

 

To boot, I have a lot of health anxiety which is really not helping my current situation. I keep thinking in the back of mind, my cousin had this.  She was stage 1.  However had clear cell. She went through chemo and radiation and was fine.  I know I'm very lucky given my stage and grade.  But my anxiety gets in the way.  Also, I live across the country from my family so that's very hard. I have a free close friends where I live who don't understand the anxiety I'm having.  

 

Like you, I have lost 10 pounds since my diagnosis.  I cut out sugar, sugarless gum and life savers from my daily staple. I would eat lots of life savers and get at least a pack of prbit gum a day.   I'm sure that had something to do with my weight loss.  

 

Have you done any resource on supplements?  Also, I'm still bleeding very lightly after my surgery . Doc did it using the Di Vinci along with an open  given my fibriods. I'm nervous I'm still bleeding. In my paperwork from the doctor, it says I could experience light bleeding for up to 8 weeks???  Would you mind sharing your experience?

 

Also, have you looked at getting any special lab work?

 

This support group is wonderful.  

 

 

barnyardgal
Posts: 208
Joined: Oct 2017

I did bleed lightly for 6 weeks or so after surgery. I was 3a, grade 2 with adenocarcinoma. I had chemo and radiation and finished in June. The doctor put me on Letrozole to help prevent a recurrence.  I am on supplements recommended by the doctor, some of which she had me taking because the medicine has some side effects. I'm on a whole foods multilvitamin, and vitamin d, calcium,and a b complex with biotin. Letrozole can cause bone loss, joint pain,and hair thinning so the last 3 are to help combat that. Also a probiotic and vitamin c.

 

MoeKay
Posts: 203
Joined: Feb 2004

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

Northwoodsgirl
Posts: 519
Joined: Oct 2009

Denise66, I am glad you found this forum for support and sharing the experience of gynecological cancer. 

1. Weight loss: I lost 20 pounds by the time I was discharged from the hospital on the 3rd day post-op. I don’t think I ate more than 3 bites of food at each meal. No appetite. 

 2. Diet and weight gain: I eat organic as much as possible. I increased my protein intake to help heal faster. I don’t drink soda/pop. I try to eat a healthy diet but am not extreme in anyway. Take Vit D and multivitamin ( when I remember). No problem with weight after treatment completed. 

3. Anxiety: Normal to experience anxiety. I was given RX for Ativan  use as needed. This was part of a standing order at the center I went to. Also the Compazine and Zofran for nausea also may help with anxiety. I was fortunate that I never needed the Ativan because between the anti-emetics and pain pills and guided imagery CDs I would listen to daily - I had enough resiliency to manage through this most difficult challenge in my life. I was 53 yrs old when I was diagnosed back in 2009. My heart goes out to you dear one...Please share your anxiety symptom with the nurse practitioner or GYN/ONC and get something to help you deal with cancer. 

4. Second opinion on pathology report: I went to a University hospital and the women’s Gynecological Cancer Center was a Oncology National Cancer Center of Excellence . I didn’ t seek a second pathology opinion. I did get a second opinion before I selected my surgeon and hospital and surgical laparoscopic versus “open” surgical approach. I did have removal of sentinel node -para-aortic and about 27 lymphatic nodes removed (all nodes were negative for cancer). You are entitled to a second opinion of course. It may help reassure you. 

I wish you well and I pray for peace and grace to help you as you progress through your treatment/therapy. 

Fighting cancer is very upsetting and anxiety producing but you will get through this one step at a time.

Lori

Denise66
Posts: 56
Joined: Aug 2018

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?

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

I got my hysterectomy less then 8 weeks ago and I was bleeding up until 1 week ago, though it had been diminishing in amount for a while.

Did you have your post surgery check up with your Gyn-Onc? They can check on that to see if your bleeding is normal.
I was stage 1 grade (FIGO) 1 with a small tumor. 
I know a lady with the same a similar diagnosis to you and she was recommended some external rads and I believe 3 sessions of brachyteraphy (not sure about LVSI in her)
You have No LVSI and Negative peritoneal wash, and that is great, besides your negative lymph nodes.
I believe radiation should start after 4 weeks? I heard some people has taken progesterone but I do not know advantages or not.
A second opinion could help but I do understand your feeling of confusion  Embarassed
Let me know!

Northwoodsgirl
Posts: 519
Joined: Oct 2009

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

Armywife
Posts: 281
Joined: Feb 2018

I did get a second opinion, because my insurance paid for it.  Going into surgery, they were almost sure I was Stage IA, Grade 1.  My surgical path came back Stage IIIA Grade 1.  My second opinion examining the same pathology ended up with Stage IVB, Grade 2.  I did not have any bleeding after my DaVinci Robotic hysterectomy, but most women do.  I had 6 cycles of chemotherapy, and my team decided we would reserve radiation for recurrence.  I pray I'll never need it.  I'm coming up on my one-year mark from the end of treatment in October.  I understand your fear and nerves.  I was given a prescription for Xanax by my primary care provider, but I've used very few of the pills.  The decision-making part was the hardest for me.  Once we chose a treatment plan, it got a lot easier.  Best to you.  We are here for you.

Denise66
Posts: 56
Joined: Aug 2018

Where did you have your second opinion on your path tissue? Also, I don't understand how you received different results.  Is this a common occurrence?

 

Did your treatment change as a result of the different stage?

 Congratulations on your 1 year mark!  

Thanks so much for responding.  

Armywife
Posts: 281
Joined: Feb 2018

I had my second opinion at MD Anderson, which is about three hours from me (I live in San Antonio.)  The slides from my surgery were sent to MDAnderson, and their pathologists read them.  I think this was a good example to me that sometimes medicine is just as much art as science.  Two different people saw two different things while looking at the same tissues.  The MD Anderson folks saw cancer on the outside of the uterus and in one of the tubes, which was not picked up here at our military hospital.  Both pathologists here and there agreed on myometrial invasion (less than 50% but barely), both agreed on LVSI and positive pelvic wash, and both agreed that there were fragments of endometrioid endometrial adenocarcinoma with no clear margins in my cul-de-sac.  MD Anderson graded the tumor as a 2, home graded it a 1.  My surgeon here still believes I am a Stage IIIA because the mets to the cul-de-sac she says are part of the pelvis.  MD Anderson considers them distant mets.  The treatment plan was the same - 6 rounds of chemo.  My surgeon here wanted me to do 25 rounds of pelvic radiation and 5 rounds of brachytherapy.  MD Anderson was split on whether to do radiation, and their chief recommended we reserve it for recurrence, as there was nothing visible to aim at after chemo and we would have been doing a preventive dose rather than a treatment dose.  So I finished chemo October 2, 2017, and will have my one-year scan later this month.  I don't know how common it is to get varying reports, but in the end it didn't matter since treatment was the same.  I would prefer to claim the Stage IIIA, Grade 1 prognosis because it sure is a lot better than the Stage IVB, Grade 2 - but all my reports have been changed to reflect the second one.  In the end, it's classified as advanced stage and I am just not going to dwell on that until I have to. 

CheeseQueen57's picture
CheeseQueen57
Posts: 797
Joined: Feb 2016

I was treated at Fox Chase in Philadelphia. My slides were also sent to Johns Hopkins and resulted in the same results. When I reoccurred 8 months later I sought a second opinion at MD Anderson in Houston. Because my treatment (Megace) is working we didn’t change therapy. But at MD Anderson they did have some more options based on my Foundation One report should I need it. 

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