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Hope to be a survivor soon

CJM1948's picture
CJM1948
Posts: 4
Joined: Jun 2020

Dear All: I was dx'ed with Stage1A-Grade 2 endometrial cancer in April 2019 when I was 70. I had a total hysterectomy and six brachytherapy treatments. I was just dx'ed with a recurrence on my vaginal wall and will soon start daily intensity modulated radiation therapy (IMRT) for five weeks followed by a TBD amount of brachytherapy. In preparation, I have gone on a low fiber diet and am taking Meta Mucil and a probiotic daily. I am also training my bladder to hold 12 ounces of water for 60 minutes. Any advice about what else I can do to decrease collateral damage to my colon, bladder, vagina, and GI tract?

 

Thank you!

CJM1948

 

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

I just wanted to say welcome.   This board has been unusually quiet lately and I cant answer your question.  I'm sure others will come along.  We are always sorry to see someone with a new diagnosis.  But there is lots of help here.  I'm sorry you had a recurrence so soon!   Are you receiving care at a cancer center?   It is better that the recurrence is local.  It sounds like they are really going to give you the full treatment now.  Have you read some of the previous posts?   You can search sometimes, for instance getting ready for radiation therapy.  I hope some members come along shortly to help with your questions.

 

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

CJM, you can read many of my posts about my battle with recurrence on the vaginal wall. Briefly, I had UPSC,1A back in 2016. Surgery, 4 brackys, 3 carbol/toxol. One year later, 2018, lesion on vaginal wall: cisplatin while having 5 weeks pelvic rads and 4 more brackys! One year later, 2019, mass in vagina - surgery to clear - mostly dried blood but some upsc!!! Oncologist was not hopeful it would ever be gone but latest CT showed all clear there! Finally! I do however have 3 lymph nodes to watch - I am scanned every 3 months but did clear that vaginal wall/cuff which is not easy. SO! Sounds like you are doing everything good to get ready for new treatment. After all my treatments, I am OK with all function but do have weak bladder control and have to wear Depends but if I go often and do not wait, am OK. At 80 years, I can deal with that. Smile

I hope this does not depress you to see the battle you may need to wage, but can report that today I feel fine, live life to the fullest as one can in this virus time, and feel good about current treatment, Megace/Tamofin switch every 3 weeks to retard lymph node growth. Wishing you the best to come.

df

MAbound
Posts: 1105
Joined: Jun 2016

I saw your post last evening, but didn't want to be the first to reply because it's always upsetting to me to first meet someone who is here because of a recurrence, especially after being diagnosed so early with adenocarcinoma which should have been easily curable at that point. It makes me feel guilty because I was diagnosed at an advanced stage and grade and had the kitchen sink thrown at my cancer and here I am more than four years later NED. 

I just can't help but feel that if I were diagnosed as a stage 1 knowing what I know now, I'd want chemo in spite of how rough that is because cancer is cancer and I'd just want to kill it deader than dead the first time around. Hindsight, I know, and so most of us put our lives in the hands of our doctors trusting that they know best because there just is no time in the beginning to learn about, understand, and grasp the ramifications of the decisions we have to make. Yes, there are algorithms for "standard of care" at the different stages and grades, but those get tweeked all of the time to suit individual circumstances and therein lies the value of getting multiple opinions before starting a "standard" treatment plan. Different doctors have different educations, experience, and practices for treating cancer. A medical oncologist probably gives preference to treating cancer with chemo whereas a radiation oncologist will favor obliterating it with radiation. With that in mind, when faced with agreeing to any treatment option, you really want to arm yourself with a concensus about what you should do because your decision is not only about killing the cancer, but also with leaving you with some quality to your remaining life and there is no "one-size-fits-all" answer to that.

You are facing more radiation now as a result of your recurrence and worrying about collateral damage and what that will mean to you afterwards. I'm wondering if this is your best or only option? Have you gone for 2nd or 3rd opinions to better understand what your options are? This is supposed to be a slow growing cancer, so you shouldn't feel rushed into the current treatment plan despite your instincts to just do what you are told to hopefully get it gone. You can put the brakes on it if you need to have additional consultations. I'm curious as to why chemo isn't an option or at least a prelude to the radiation? Radiation only treats what it is aimed at, whereas chemo treats systemically and has a better chance of getting any microscopic cells that may have already travelled outside the planned radiation area. You do not want this to pop up elsewhere down the road. Radiation damage will impede any future drug treatment to that area, so you really need to understand what all of your options for treatment are now before your circumstances change yet again. You can't be a passive patient while battling cancer...you are your own best advocate.

 

 

MoeKay
Posts: 319
Joined: Feb 2004

Hi CJM, I know it's not an answer to the question you asked, but I too think a second opinion as to treatment would be an excellent step at this point, if you haven't already done so.  I obtained second opinions on both treatment and pathology when I was diagnosed with stage 1C, grade 2, endometrial adenocarcinoma in 1999, and doing so reassured me that I could be confident  that I knew exactly what I was dealing with.  (Since the time of my diagnosis, the staging system has been changed, and under the current system, I would be stage 1B.)  Given your recent recurrence, if I were you, I would also get a second pathology review of all tissue samples, both original and recent. 

Welcome and best of luck to you!

Maxster
Posts: 63
Joined: Apr 2020

Hello CJM, I too agree about a second opinion.  I am puzzled as well that chemo was not offered.  I had my pathology slides reviewed for a second opinion as well as having a second opinion on treatment.  There were differences on both!  I decided to go with the second opinion since I was able to go to a specialized cancer center for that and trusted their expertise.  Because my cancer (UPSC) is so agressive I opted for full chemo before radiation.  I had stage IIIC. The premise was that since this cancer was aggressive, it was important to try and kill any cells that may be lingering after the surgery.  That turned out to be what the latest research recommends and what my radiation oncologist (another researcher) also agreed on.  You have some time to make a decision to seek a second opinion on treatment and the pathology to make sure you are doing what is best for your cancer's recurrence.  I wish you the best and hope all turns out well.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

Hello, CJM.  I am glad you found us and the ladies here really are terrific.  I am sorry to hear you find yourself having to go through more treatment so soon.  It sounds like you are taking some positive steps with your diet and training your bladder.  Though it was for the intitial dx, I also had IMRT and that is very helpful in trying to mitigate collateral damage as well.  I am a big fan of probiotics as I think it can have an impact on radiation side effects as well. 

I hope we have not scared you off.  We would really would like to hear more and help as we can.  

CJM1948's picture
CJM1948
Posts: 4
Joined: Jun 2020

Dear All: Thank you! I am overwhelmed by all the support I have received from all of you after just one post! I read through the uterine cancer posts on this site for hours before posting and felt like I already knew most of you before you wrote to me. I am struggling a bit not to sound defensive about my decision to initially treat my recurrence of endometrial adenocarcinoma with IMRT (starting today) w/o getting a second opinion. If I regret my decision, you will be among the first to know. I will say this: My cancer MD is a gynecologic oncologist with Seattle's Swedish Cancer Institute. I did a ton of research last year before choosing him. He performed my total hysterectomy w bilateral salpingo-oophorectomy, oversaw my follow-up brachytherapy, discovered my recurrence, and ordered a total body CT Scan followed by an MRI before recommending that I start with IMRT. We discussed chemo at length and chemo is still on the table if my vaginal wall tumor proves to be radiation-resistant or if, for another reason, we decide that chemo should follow IMRT. All of us do the best research we can and make the best decisions we can and then learn from our mistakes. I sincerely hope that my decision to start with IMRT is not a bad decision. I will keep you posted about my progress and will follow yours. Thank you!

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

I go the UofW for my treatment.  Swedish is an excellent facility.   There are studies that show chemotherapy does not change statistics in 1A type 2 endometrial cancers.  i didn't seek a second opinion.  WE all understand the difficult decisions about treatment.  Finding a doctor you trust is most important.   I hope your radiation goes well.  I remember most that women benefited from using probiotics during treatment.  

CJM1948's picture
CJM1948
Posts: 4
Joined: Jun 2020

Thank you for your message! It is nice to talk with someone else from Seattle! I just finished IMRT treatment #2 and am taking a probiotic, got off all dairy, and changed to a low fiber diet - so I hope I will weather the treatments w/o too much damage. Do you also have endometroid adenocarcinoma? My relapse was a total shock to me and my oncology team. Have you relaped (I hope not). Please let me know how you are doing. Going through all this while the pandemic is still so widespread here is tough. My son does COVID testing so seeing him is not happening, though I can see my daughter and have a wonderful husband. He is a blessing. I hope you are doing well!  

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

You can read my blog.  I use the blog because I think it is just a llittle more private.  If. you click on my name and read the blog.   I was diagnosed with an early form of endometrioid called EIN.  Then. a few days before my surgery they called and told me I had serous endometrial intraepitheilial carcinoma.   It was a shocking day for me.  I am an RN, so knew the difference between the two.  Mine was like a cancer in situ, but serous in situ can spread.  So I had. my. surgery, and they found no other malignant cells anywhere.  I could have been even a stage 4 with this serous.  I was given the option of treatment or no treatment.  But the studies show that my cancer could recur even with treatment.  I was stage 1A with no malignancy in the hysterectomy specimen.  That will be 2 years ago on July 16.   I chose no treatment.  I have not had a recurrence.  July 16 I have my follow up appointment.   That will be two years NED.  That means no evidence of disease.  I hope all goes well with your radiation treatment and you will be NED soon too.  

MAbound
Posts: 1105
Joined: Jun 2016

Our posts were based on what information we had to go on from your initial post and that left us with a lot of room for concerns and questions. Radiation therapy generally scared the bejeebers out of most of us before we submitted to it because of the potential for life altering and/or late occuring side effects. Our urging for second opinions comes from our personal fears about it because if there are other options, you really want to understand them before going down any particular path.

Cancer puts us in the position of having to make these decisions we really aren't qualified to make, but it's in our own best interest to educate ourselves as best we can because we have no choice but to make them. You don't have to defend this decision to us. We value what you share because we can all learn from it. I hope you will continue to post here to tell us how things are going with you. You'll never know who that may help. Your confidence in what you have decided is what matters most and it sounds like you have that with your current doctor. In the end, all decisions invlove risk and are a leap of faith to submit to.

jan9wils's picture
jan9wils
Posts: 152
Joined: Mar 2017

I had 5 weeks of IMRT and three brachys after my hysterectomy in 2014. I was diagnosed with stage 1B grade 2 endometrial cancer. And while I have recurred several times since then, I have never recurred to my vagina. Probiotics helped me and continue to help me. Please let us know how you respond to your treatment.

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

I had external radiation as part of my initial treatment for Stage 3B uterine carcinosarcoma. Although a CT-scan after chemo did not show any sign of cancer, my gynecological oncologist and medical oncologist both urged me to have radiation as well, given the aggressiveness of my type of cancer. After much thought and further discussion with my doctors, including the radiation oncologist, I went ahead with 25 external radiation treatments for my pelvis area to reduce the chance of recurrence to this area.

Each of us have different reactions to the various treatments we receive, but for me, radiation was much easier than chemo. To help control diarrhea, I followed the bland, low fiber diet that was recommended while I was doing the radiation sessions. I did develop some bladder inflammation during week 4 of the treatments, but this disappeared about 2 weeks after treatments stopped, as my doctor had predicted. As far as I know, I don't have any residual side effects from radiation. I did not, however have brachytherapy.

I didn't find this site until after I was done with treatment, but like you, I did research when I was first diagnosed and was comfortable with the approach and therapies recommended by my three doctors (gynecological oncologist, medical oncologist and radiation oncologist). So I did not seek a second opinion either.

Maxster
Posts: 63
Joined: Apr 2020

All of us make the best decisions we can based on the type of cancer we have, the stage, our physical condition, research and faith we have in those treating us.  For me I had faith in my family which includes a research oncologist.  I do not know if I would have found the information they shared with me on my own.  I was in shock and denial most of the time.  I made the decisions I felt best for my cancer.  I learned along the way that everyone has a different twist to their cancer and different reactions to treatment.  It would be nice if there were on surefire plan everyone could follow but there is not.  It sounds like you have a good relationslhip with your gyn onc and trust his opinion.  I think that is wonderful.  So much of our success is based on our confidence and belief that what we are doing is best for us.  I hope all goes well for you.  I had some effects from the radiation but at this point they have ended.  I had my last one in April.  Good luck to you!

zsazsa1
Posts: 553
Joined: Oct 2018

I don't know if you've already started the IMRT, but one of the things I wished that I had looked into was having the IMRT done with me in Trendelenburg position (the table tilted a little so that my head was lower than my feet).  The reason for this was that gravity would then help my intestines to fall toward my head, and hopefully mostly out of the field of the radiation.  For pelvic radiation, it's feasible to let gravity pull the intestines out of the field.  Not so much I'd assume for a higher up recurrence, like para-aortic node. 

I have no idea if any center near you is set up to do this.  I would contact UW, if Swedish Hosp says that they cannot.  There were some studies done on this, but I don't remember how well it worked to prevent collateral radiation damage to the intestines and colon.

Another thing to look into is proton beam radiation directed just at the area of recurrence.  This is fairly new, expensive, and REALLY works like a laser-sharp pencil of radiation, directed just at the area you need it.  They have it at UW.  https://www.seattlecca.org/treatments/proton-therapy/proton-therapy-overview

Good luck with the treatments.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Is the proton beam radiation the same thing as the cyber-knife that derMaus used to tell us about?  She got such good results with that!

HappyWarrior's picture
HappyWarrior
Posts: 6
Joined: Nov 2019

Hi, CJM. While I can't offer advice, I want to send you a virtual hug and encouragement for your treatment.  I was dx with Stage 1a - Grade 2 endometriod carcinoma, NOS, a few months back.  I'm getting ready for another 3-month checkup and recurrence is never too far from my mind, so my thoughts and prayers are with you.  

My doctors originally thought from the biopsy it was poorly differentiated endometrial carcinoma with 50% clear cell solid variant and 50% endometriod, which was hard to hear, but after the TAHBSO they said G2 and "pseudo clear cell changes."  My gyn-onc said we could do brachy or "wait and watch" and recommended "wait and watch," which I did, so each appt comes with a little trepidation.  

Did your gyn-onc give you similar options?  Did you have a high Ki-67 index or significant invasion?  My Ki-67 was 25%, Napsin A stain was negative, and invasion was 12% of 26mm.  I worry whether I made the right decision.  Any advice?  Did you have symptoms with the recurrence? Sorry for so many questions.  Never imagined being on a cancer board, but at least it's filled with smart and caring women willing to support one another.  What a blessing!  Anyway, I'll be eager to read your updates and hear how you're doing.  ((HUGS))

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

We are always wishing you didn't have to be here but are happy to walk this path with you.   I will answer you because I also chose no treatment, which makes most women on this site nervous.   I was initially diagnosed with an early endometriod pathology, positive for KI67 and P53.  When the slides were sent to my gyneocologist the pathologist there changed the diagnosis to serous endometrial intrapithelial carcinoma.  Big change.  It is cancer in situ but serous cancer can spread at that stage.  After surgery i was found to have no other malignancy in the hysterectomy specimen.  I was given the option of treatment or no treatment.  One reason being she said I could recur even if I had treatment.  I am going for my two year check in 2 weeks.   I am NED, no evdience of disease.  I don't have any symptoms that worry me right now.  You will find women who don't recur gradually drift away from this forum.  Women do come back and  report 5 and 10 year survival.   The unkown aspects of this disease are really hard. Good luck on your check up.   

HappyWarrior's picture
HappyWarrior
Posts: 6
Joined: Nov 2019

Thank you, Forherself.  I appreciate that.  I'm glad your decision has worked out well and that you're quickly approaching 2 years -- that's terrific!  When I was told it was G3 and 50% clear cell, it was overwhelming, given what I found online.  When it got downgraded, it was great news -- but I had a hard time making the transition to wrapping my mind around "wait and watch" after preparing for adjuvant treatment of chemo and radiation.  Seeing the Infusion Suite time blocked off on my first visit made it seem very real.  I welcome the positive turn of events, but worry whether we really know how this G2 cancer that originally looked so bad will behave moving forward.  I go back 7/17 and hopefully will get continued good news.  The issue is this spot on my spine the pathology report cited as "metastatic bone disease is not entirely excluded, but considered unlikely, given absence of additional osseous findings."  I'm hoping things are stable and that it really is nothing to worry about.  Anyway, thanks for reaching out and sharing your experience -- it's comforting and I appreciate it.  Eager to celebrate your official Year 2 soon!

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

I would say the pathologist HAS to say that beucase there is always that one rare case once reported.  They can't say absolutely.  I hope your news is good.  I had a growth on my back too.  I had back surgery in October.  But I had an old horse fall injury and they called the grown panus which is scar tissue.  If you are feeling worried about your choice you could seek a second opinion.  Doctors do not mind this and it might help settle your mind.

HappyWarrior's picture
HappyWarrior
Posts: 6
Joined: Nov 2019

Appreciate the suggestion, Forherself.  Seems silly to not just jump for joy and embrace positive news, but the emotional rollercoaster ride gave me whiplash. ;)  I was with my Dad at UofMich when he got his terminal CA dx back in 2016.  He lasted 6 months after that shocking discovery.  Hearing my own original dx 3 years later was so difficult (as so many of you can unfortunately relate) that i guess I'm afraid to let my guard down now only to get another sucker punch.  

I'm so glad your growth had a benign explanation and hope the surgery was successful for you.  

Anne-Marie117
Posts: 1
Joined: Jul 2020

I was just diagnosed with mixed clear cell and endometriod type cancer, and I am not handling it well. I've made appointments to see two surgeons next week. The clear cell part is what really concerns me. From what I read, it's "aggressive." I'm terrified. I went to my doctor immediately upon one episode of post-menopausal bleeding -- I literally called her the day it happened and was in her office the next day -- so I am hoping I caught it early. I know I am in for extensive surgery and follow up treatment, and I am very afraid. Any advice on how I can cope?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

Anne-Marie, it is completely understandable to feel the way you do.  Shock?  Terrified?  Yep - it makes sense.  My suggestions:

1. Try to take a breath.  

2. Work with a gynecologic oncologist - they specialize it gyn cancers

3. Do not read Dr. Google!  There is old advice and stats out there.  You are a statistic of ONE!

4. The gyn-onc will make a plan and you will work the plan - this is a new journey/process you are about to start.

5. Ask us anything!  The wonderful ladies here will be along to help as well.  Don't be afraid to ask for something to help with the anxiety. 

You are not alone in this process.  Hugs 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1745
Joined: Jun 2015

Welcome Anne-Marie,

So sorry you had to find us but very glad you did.  I agree with everything NoTime said. I want to second her advice on getting something to help with the anxiety. I am not one to take pills of any kind. But, my sister talked me into getting Lorazepam and I am so glad I did! It just helps to get through the hard parts. When you first hear the C word, there is an immediate fear of a death sentence. Especially when we get the aggessive kinds. Please know, there are many of us walking around, living a normal life years after surgery, chemo and radiation. They have made lots of progress in our care.

Please feel free to ask us anything. Someone will come along with answers and support.

Love and Hugs,

Cindi

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

I am sorry to hear you are dealing with this.  It IS so hard.  Not knowing is so hard.  Please know how you are feeling is what we all felt.  I found it comforting to talk to women who have had the same experience.  It was hard talking to people during the waiting time.  Questions that I couldn't answer because I didn't know much.  I have a blog if you want to read about my experience.  I had my two year anniversary of NED July 16.  That means no evidence of disease.   Feel free to come and talk about your experience.  This is a great place for great advice and support.  Keep in touch.  Your local American Cancer Society may have resources for you, and don't forget your family doctor.  Their office may have resources and advice for you too.

 

I had a very easy time with the surgery and recovery.  

BluebirdOne's picture
BluebirdOne
Posts: 375
Joined: Jul 2018

It is normal to feel terrified, alone and unable to cope. I was an emotional mess after dx, the fear of the unknown was terrible. I was too emotionally fragile to tell people other than my immediate family and two friends. As I went through treatment and learned everything I could I was coping better. Two years ago, I was having surgery, and I marvel at my progress. Ask for all the help you feel you need whether it be medication, therapy, or just a sympathetic shoulder to cry on. We have all been there. Good luck to you. 

Denise

Maxster
Posts: 63
Joined: Apr 2020

Hello Anne Marie, I understand your reaction totally.  I went to the doctor at the first sign of post menopausal bleeding (the next day actually) and was eventually diagnosed with uterine serous cancer which is similarly aggressive as clear cell.  I was shell shocked.  I followed some good advice like NoTimeForCancer shared.  Make sure you find an experienced gyn-onc for the surgery and follow-up.  Make sure you are given the most evidenced based treatment out there.  I really encourage second opinions. If you are near MD Anderson or Memorial Sloan Kettering, go there or a high quality university if possible.  I know it's hard with Covid to travel but do so if possible.  This discussion board is full of knowledgeable and caring people who can help you with any questions.  If you have a support network, make sure to engage them.  It is good to have people who will listen and affirm your feelings.  You may get overwhelmed at times but try to keep on moving forward.  You have friends in this online community to help you.

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