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In shock UPSC IIIC diagnosis (Incomplete Staging) Update

rcdeman
Posts: 257
Joined: Aug 2016

Hello all, I previously posted on this forum about two weeks ago about my mom.

I am in shock right now.

Bad bad news… So my mom had her hysterectomy plus 19 pelvic lymph nodes removed on Tuesday. Although the initial surgery was supposedly successful according to the gyn-onc, the pathology reports came out today and it was discovered that the cancer has spread to one of her lymph nodes, which has upgraded her staging from 1A to IIIC. Even worse, this type of cancer is not endometrial cancer but uterine papillary serous carcinoma, which is a rare highly aggressive cancer that has a lower chance of successful cure and higher chance of metastasis and survival. I am feeling shocked right now and I don’t think I can handle anything at the moment. The gyn-onc is on vacation at the moment but we have an appt with him on Tuesday 9/13 to discuss treatment... Prayers are needed. How do I even deal with this?

I'm assuming she has to go in for a second procedure for omectectomy, vaginal brachytherapy, any other lymph nodes, do a PET scan, and then receive both RT/Chemo treatment afterwards.

Are there any UPSC IIIC+ survivors here? Is this curable? How successful are treatments? What is the metastasis rate? Which treatments (both RT and types of chemo) have worked?

Thanks, please help!

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

RC,  Remember to breathe. There are MANY IIIC and IV stage survivors on this board. Please don't look at the stats on line. They are really outdated. I'm sorry you and your Mom are having to go through this. There have been a lot of discoveries and treatments for our cancer. And, I'm not so sure UPSC is as rare as we are led to believe. It sure seems like there is a lot of us out here!  Take this journey one day, one step at a time. You will be amazed at how strong your Mom will be. And, she is very lucky to have you there to support her!

Please come back and let us know what her next steps are and how she is doing. Also, feel free to ask any and all questions. Someone here will most likely have the answer.

Love and Hugs,

Cindi

rcdeman
Posts: 257
Joined: Aug 2016

Thank you Cindi.

I've looked at all the stats and information online and they were so disheartening with the abysmal survival rates. My mom is only 65 and I really wanted her to have a long happy life. I don't know what I would do without her. I'm so worried and anxious ever since I received the pathology reports and have been crying as this sinks in. I will try to be positive, but it's difficult at the moment. I am taking heart in the fact that there are others here who have survived and are doing well.

For those who have gone through this, what treatment(s) did you have? I'm afraid my mom will have to go through a second surgical procedure. The doctor was hopeful it was just stage 1A normal endometrial cancer so he did not do ometectomy or remove any of the para-aortic lymph nodes. They did do a peritoneal wash that came out positive. It wasn't until we received the path reports only to discover this was UPSC 3C.

I will need a lot of support during the coming months, and hope those who have gone through this experience can guide me through this.

Trying to be positive,
Rebecca

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

Hey Rebecca,

There is a thread that you might find helpful. Several of us documented our chemo journey last year and there is a ton of information on what we did and why. Please check out 'Ladies Going Through Chemo'. I think it will help you understand this better.

Come back with questions. You will find it easier to be positive once you know what the plan is for your Mom. It is amazing how much better things are to handle when you have a plan.

Love and Hugs,

Cindi

rcdeman
Posts: 257
Joined: Aug 2016

Thank you Cindi. What a huge thread! I'm still a bit overwhelmed here, but I will definitely take a look at this.

Best,
Rebecca

rcdeman
Posts: 257
Joined: Aug 2016

Thank you Cindi. What a huge thread! I'm still a bit overwhelmed here, but I will definitely take a look at this.

Best,
Rebecca

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Welcome to this place that no one really wants to be a part of. you have found a great place to be.  The ladies here are super.  You will find support, compassion and information here.  Don't be afaid to ask any questions, chances are someone will have an answer.  I was diagnosed 4 years ago with Serous Papillary endometrial andocarinoma stage IV high grade.  My story may not be the most encouraging, but it has been four years and I am still hear.  I had pretty good results from Taxol/Carboplatin.  It gave 7 months of NED.  I was on it until I started having reactions to the Carbo. We tried several other with not the best results. The last chemo,that I was on was Avastin and it was working quite well until it cause a mild heart attack.  I am now on an immunotherapy drug.  I feel better than I have for a very long time.  I have many more good days than bad.  And I am here to,say never give up hope.  There are new treatments around the corner.  There are ladies here with stages III and IV that are NED and have been for a numbe of years.

You will.find that your ,other is stronger than you ever imagined and so are you. She s lucky to,have you in her corner.

Hugs and prayers, Lou Ann

rcdeman
Posts: 257
Joined: Aug 2016

Dear Lou Ann,

Thank you for your kind words. This is so hard, but I will try to take it one day at a time. I only have my mom left because I lost my dad from advanced stage liver cancer 3 years ago. He was only 62. I really don't want to lose my mom in this painful way either.

I will also be praying for you and for anyone who is suffering from this awful cancer.

Rebecca

EZLiving66's picture
EZLiving66
Posts: 1383
Joined: Oct 2015

I think half the ladies here have UPSC.  I do!!   When I first read those online stats I figured I'd be gone in a few weeks,  but it's almost a year from my surgery and I'm still kicking. Survival rates are much higher now and new treatments are coming out all the time.   Don't panic,  it will be OK.   We're here for you! 

Love, 

Eldri

rcdeman
Posts: 257
Joined: Aug 2016

Thank you for your encouraging words, Eldri. I can only pray for the best outcome.

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

It has been almost a year to this date that I was diagnosed with endometrial clear cell cancer 3c also. I never asked the doctor how long I had to live and I quit looking at the statistics and went through all the treatments which were hysterectomy, radiation both internal and externa, 6 rounds of carbo/taxol. I Finnish treatment in June and had a clear ct scan. Yes, it has a good chance to come back, but I'm determined to live each day in the best way I can. Be there to support and care for your mom. I know it will mean the world to her as my girls have been there for me, often in spirit as they live far away. I am now 63 and I have the will to live. Prayers for you and your mom! I know you can do it:)

rcdeman
Posts: 257
Joined: Aug 2016

I am encouraged by your optimism and your strength of will, Soup52. For me, it's the feeling of helplessness and not being able to control the situation, watching as your parent is suffering, that's the thing that makes me miserable. I will try to be strong for her, and I'm asking for everyone's prayers (and will pray for you all in return) for the best outcome and a cure.

rcdeman
Posts: 257
Joined: Aug 2016

Hi Soup, 

Can I ask if you had vaginal brachytherapy?

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Yes, I had 3 vaginal brachytherapy one week apart for each after I had external radiation. Unfortunatel, for me it was quite an unpleasant experience. I know for many it wasn't like this, but for me it was painful + my radiation oncologist has terrible bedside manner which didn't help. I'm sorry to be negative about it, but I was willing to do anything to get the cancer And have a longer survival time.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

Hey Soup,

Just want to say that posting your experience isn't being negative. Some of us tolerated the treatments better than others. The whole point of providing how things impacted us, is so that others can see what might happen. None of this is/was easy. But, like you said... you do what you can to have a long(er) life.

I also took the approach to do whatever the doctors suggested. For me, that was chemo and brachytherapy. I'm just about 9 months out from chemo and 8 months out from radiation. I'm glad I had the treatments. While I continue to heal - still some neuropathy in my feet and legs; I am getting closer to normal every day. Waking up happy and healthy each day was certainly worth the hard times.

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

There are many women on this board who have UPSC or other grade 3 cancers, relatively rare and aggressive.  I was originally diagnosed with carcinosarcoma though a second pathologist called it serous carcinoma, still grade 3.  Cancer was also found in some of my lymph nodes after my hysterectomy, so stage IIIc here as well.  I was shocked, too, when I received the final pathology as my doctors were so encouraging right after surgery that "it looks like we got it early."  

I freaked out when I first went online and saw the stats as well.  I've since learned that while the internet can be a great source of info, a lot of info about UPSC is dated as are some of those grim stats. It is NOT an automatic death sentence and women here are enjoying their lives, even if they are continuing to deal with their cancer.  And, as both Cindi and Lou Ann have said, there are new advances being made all the time in treatment.

You will find that the women here have gone through various protocols.  Some have done the "sandwich" therapy, chemo, followed by radiation, followed by chemo.  Some have done chemo, and then radiation, external and/or internal.  And there have been other combinations as well.

I posted this in another thread, but I'll do it here for you as well.  When you meet with your mom's gyn-onc, here are a few questions she might want to ask:

What treatments are you recommending and why?

What is the goal of treatment?

How will my response to treatment be monitored and how will we know if treatment is working?

How should I prepare for treatment?

What risks are there and what side effects should I expect?  What can I do to help minimize the side effects?

What are the chances of recurrence with this treatment plan?

Also ask to get copies of all the pathology reports/scans/etc. for her records. These will come in handy should she decide to seek a second opinion.

This is the scariest and hardest part in some ways, having the diagnosis but not knowing what comes next.  Once your mom and her doctors have come up with a plan, you will have a path to follow, and that will help a lot.

Take a deep breath...  and don't give up hope.  

Hugs to both of you.

Chris

rcdeman
Posts: 257
Joined: Aug 2016

Thank you, Chris! This is most informative and very helpful. I will definitely need it as a guideline when we see her gyn/onc. I am encouraged by that we are not going through this alone. Your knowledge and experience is greatly appreciated. May I ask if you are still on treatment currently? How long has it been? Is there any progress after your treatments and are you NED?

My concern right now is how everything is moving so slowly. Because the doctor is on vacation this week, we won't get to see him until 9/13. Even then, if he decides to perform a second surgery (omentectomy, etc., dissection of para-aortic lymph nodes), that will take a week to get approved (by our insurance), and then she won't be able to do chemo/radiation until weeks after that. How likely is it that the doctor will even perform a second surgery and how long does it usually take to start chemo/radiation after surgery?

Thank you for everything,
Rebecca

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I was diagnosed in June of last year. I finished chemo in December 2015 and finished with brachytherapy in February of this year.  My post-treatment PET scan was in May and was clear.  I am monitored every 3 months by my docs.  Follow up PET scans will be done every 6-12 months.

I really can't speak to the likelihood of a second surgery before chemo;  I don't think it's that common since she has already had a total hysterectomy and if they found cancer in the lymph nodes, they must have already performed a lymph node dissection.  Someone else here might have a better answer to that question.

Generally, doctors want to start chemo sooner rather than later after surgery.  But they do want your body somewhat recovered from the trauma of surgery before it's subjected to the rigors of chemo. My post-op appointment was 3 weeks after surgery and my gyn/onc wanted to start chemo as soon as possible after that.  Due to some other, non-cancer related issues, my chemo began 5 weeks after surgery.  Others have started chemo both sooner and later than that.

I know that things seem to be moving slowly, but rest assured it is not taking that long.  Your first post was only 2 weeks ago, and since then, your mom has already had her surgery and gotten the pathology back.  It's normal to want to start doing SOMETHING as soon as possible, but please don't stress too much at this point about the time frame.  Right now the best thing for your mom is to concentrate on resting and healing from surgery.  

Hang in there!

Chris

 

rcdeman
Posts: 257
Joined: Aug 2016

I'm glad you are NED, Chris. It gives me hope. I pray for your continued health!

The reason I ask is because the doctor did not perform omentectomy or remove any of the para-aortic lymph nodes which is usually the standard procedure for people who are diagnosed with UPSC stage 3. I've looked online and there does seem to be some people who have undergone a second surgery, but I am not sure if this normal.

Being that UPSC is an aggressive cancer and being that my mom is already IIIC, I feel concerned that metastasis can happen during the period of waiting. I'm scared, but you are correct, I will try not to stress. My mom seems to be recooperating well after her first surgery. She still has some bloatedness but she is not feeling much pain and doesn't even have to take any pain medication anymore, which is good news. However, she has been experiencing coughing for about 2 months now, and I'm scared that this may be a sign of the cancer having already metastasized to her lungs. I am hoping this is not the case. I will ask the doctor if he can order a PET scan to check for metastasis and spread when we see him and ask him what should be done at this point.

Please continue your prayers and your support. You have all been so helpful and I am glad there is a forum like this.

Prayers to all,
Rebecca

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

As the other women here, I also understand your shock, fear, and uncertainty. My heart and blessings go out to you and your dear Mom. RC.  I have read many professional research papers about Uterine Papillary Serous adenocarcinoma, a rare and always aggressive form of endometrial adenocarcinoma. I was diagnosed almost 3 years ago with UPSC, stage 3a and I am- surprisingl- still alive and cancer free. In fact, I had my chemo port removed on 8/24/16. Your mother may do very well with treatment and can beat this. My chance of a recurrence was about 50/50 at the time of surgery and now it is more like a 25% chance of recurrence. As days go by, it will continue to drop. I will tell you that nothing in my 60 years of living at the time of my diagnosis ever prepared me for the shock and total meltdown that I experienced. I wanted to take control and decide when  my life would end.

Unless you have been diagnosed with a rare and aggressive cancer, advanced stage which is stage 3 or 4, it is impossible to understand the sheer terror that accompanies such a diagnosis. 

In the USA, about 3000 or more women a year are diagnosed with this rare form of endometrial cancer.  Unfortunately, rare cancers are not researched much cause there's no profit in it. Also, most uterine cancer patients  have a stage 1, grade 1 Endometriod endometrial cancer which is curable with a hysterectomy.

Hoping for the best for your Mom, RC.

 

 

M

 

 

 

 

 

 

 

ve form of uterine 

rcdeman
Posts: 257
Joined: Aug 2016

I am so happy for you, Abbycat2. I am more encouraged by what you had to go through and how you were/are able to fight pass it. Let us all keep on fighting. I am quite disappointed that there isn't that much research on this particular type of uterine cancer and that most people don't know about it. It really needs more exposure in order for there to be development in advanced methods of treatment.

Will continue to pray for you to have a long and happy cancer-free life,
Rebecca

rcdeman
Posts: 257
Joined: Aug 2016

Hi Abbycat, can I ask what kind of treatment you received after hysterectomy? Which drugs for chemo? Did you do external or internal radiation or vaginal brachytherapy?

MAbound
Posts: 963
Joined: Jun 2016

One thing I hear over and over again in threads is how hard the long road going through treatments and then followup monitoring is on both us and family or other persons supporting us on this journey. I can tell that my husband is so ready for life to get back to normal and so am I, but we have another surgery and probably 5 and a half weeks of radiation to go after 5 months of all of this already. It's really hard to do!

My advice is to understand that this is not something you can plow through and get over with quickly. Pace yourself. Take care of yourself. Most of all, forgive yourself and your mother when you have those days when you don't meet your own expectations. Cindi's advice is so spot on...remember to breathe! There's really a special place in heaven for those who help us through cancer treatment!

rcdeman
Posts: 257
Joined: Aug 2016

Thanks for your wise advice, MAbound. I think I am not quite prepared for the longhaul, but it's sinking in that this will be an ongoing gradual process. I am still working full-time so I will have to figure out how to juggle taking care of my mom, taking her to her sessions, etc., and working. I'll probably have to take more time off work or maybe even go on leave depending on what happens. I am hoping my mom will get better and that the chemo/radiation will be effective and not hard on her.

May all your prayers abound,
Rebecca

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

rcdeman, I wish your mom didn't have to go through any of this. She sounds like a strong, smart, independent woman and she obviously raised a wonderful child who loves her dearly. You will both make it through this chapter of life. It won't be easy and it won't be quick, but there is hope. Where there is life, there is hope.

Wishing you both strength and peace, Kim

Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor - Sept 2015; 47 years old

Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3

Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - completed May 2016; Radiation - external, 28 treatments, completed Mar 2016

 

NED: June 2016

rcdeman
Posts: 257
Joined: Aug 2016

I appreciate and am much encouraged by your words, Kim. I am so happy you are NED. Hoping it continues as each extra day you are NED is a wonderful sign that you are cancer-free.

Will pray for your continued health!
Rebecca

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

I was diagnosed in June, 2013 with UPSC. Had total hysterctomy and was staged at a Stage IIIC2. One lymph node tested positive. I did 18 chemos of Carboplatin and paclitaxol one 5 brachytherapy. Nothing easy about it but doable. I was sixty seven and dianosis and finished treatment Feb. 2014. I just had my six month checkup in July and all clear for another six months. My gyny/onc does not do CT or Pets for followup and the CA125 is not a good marker for me. I feel good - I have pretty severe neourapthy in my feet and a few holes in the memory but overall am doing great. I always had the attitude that I would beat this and never considered another outcome. However; after saying that, each six month exam is just one more step forward in this journey. You have been given lots of good advice about what to ask and one step at a time but I just wanted to give you one more name and story that is successful as of today. My husband was diagosed with bi-lateral kidney cancer one month before me and my daughter 1 1/2 years later was diagnosed with breast cancer. We are all doing great; a testament that we are definetly stronger that we think going into this. 

rcdeman
Posts: 257
Joined: Aug 2016

Joanne, thank you so much for your response. Being that my mom is in a similar state to your initial diagnosis, I am encouraged that she too may conquer her cancer like you have so far. I'm sorry to hear about your husband and daughter, but I'm glad you are all doing great and have weathered through this succssfully. I am impressed by your strength and will and will remember you as an example to follow.

Thank you so much. Prayers to you and your whole family's continued good health.
Rebecca

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

I'm closer to the beginning of treatment than the end, but still feeling very hopeful. (Feeling quite good overall, since it's been a month since my last chemo treatment and radiation hasn't started yet--sometimes I almost forget I have cancer.) A friend who had stage 3 ovarian cancer with a 25% 5-year survival prognosis said that if anyone had told her she had a 25% chance of getting into Harvard, she'd have thought that was pretty good, so she tried to look at her cancer treatments the same way; she's now 5+ years NED. But I honestly don't know how I'd be feeling if I hadn't found this board.

Joanne, you're a real inspiration to me!

Kim, it always gives me a lift to see your posts!

Thanks, everybody!

 

rcdeman
Posts: 257
Joined: Aug 2016

Prayers to you, Becca! All you ladies are an inspiration to me and my mom. We will fight just as you all have done. Let's encourage each other. I'm so glad to have found you all and will continue to rely on all your support.

Praying for you, Beccabtown!
Rebecca

janaes
Posts: 793
Joined: May 2016

Rcdeman,  sorry i havent responded sooner.  Im so glad these wonderful ladies have been there for you and that you are feeling more hope.  I remember when I was going threw all the diagnosis stuff it was real hard.  I got so many mixed messegage. At one point it looked like really good news.  Its what one of my doctors said.  I was only going to have to do radiation.  No chemo.  It looked real good.  When I went to see the radiation doctor he didnt agree and said i needed chemo.  Boy that was hard to hear.  I felt like i was on a rollor coaster for sure.  I had told every one that radiation was the only treatment.  It was so hard to except that the diagnosis was worse than the other doctor thought.  I didnt want to do chemo at all.  It felt like my life would change forever.  My life has changed.  I ended up taking time off work. Im home by myself alot while my kids are at school.  I still struggle with all this stuff at times. but i will tell you this.  Im fighting.  Really fighting.  And to be honest as much as i still hate the chemo stuff, i am glad i am doing it because i know that this is going to give me my best chance at life.  I know now that chemo is the best thing for me.  I had decided at the time that if my cancer was to come back i would be sad i didnt do chemo. There was parts of MMT in my cancer (an aggresive cancer) that i finally saw on my pathology report.  I really do hope the best for your mom.  These ladies here on this forum have given me hope too. Im doing my second to last chemo this thursday.  Please be there for your mom.  My mom works full time and lives 15 minutes from me.  Although our relationship has struggled at times, I am so greatful for some of the really hard things  and sacrafices she has done for me.  I believe in the two of you. 

lots of love

Janae

rcdeman
Posts: 257
Joined: Aug 2016

Thank you for your inspiring words, Janae. Like you, everything we're going through right now is overwhelming. Our lives are changing too quickly and we can't go back to how things used to be. I still live with my mom. She's the pillar of our household. I'm not married and I don't have cihildren. She is all I have at the moment. She is so important to me and she was the one who pulled our family through when my dad was ailing with liver cancer. Sadly, he wasn't able to beat it as the cancer had already progressed to an advanced stage. He wasn't even a candidate for surgery.

Still, we will fight. I pray for strength on my part. I've realized how weak I am compared to my mom, and I'm trying to be stronger for her when she is the one who's ailing this time. I am still working full-time at the moment, but I am considering taking time off. I don't know if I have the strength to juggle both things simultaneously at the moment. At the moment, we don't know what her future treatment will be but we will know in less than two weeks. I pray for speed, containment of her cancer, the doctor's wisdom, and endurance through this.

I wish you the best as you continue your second to last chemo session. I am completely inspired by all you ladies who are battling with your cancer and can only hope I have just an ounce of your strength. I'm not even the one who's directly suffering! Please pray for my mom as I'm sure she is suffering but surprisingly she has been the one who's been comforting me. It shouldn't be this way. I should be stronger for her.

Thank you. Hugs and prayers to you,
Rebecca

pinky104
Posts: 574
Joined: Feb 2013

Near the end of this month, I will have survived 6 years after having had stage IVb UPSC.  I didn't have any in my lymph nodes, but I had it in my uterus, both ovaries, my omentum (where there was a cake-like formation), and my small intestine.  I was considered stage IVb because it had gone out of my pelvis.  I had surgery and chemo with Taxol (Paclitaxel) and Carboplatin.  I had nothing else done to me besides that (no radiation of any kind, alternative treatments, no special foods or supplements).  When I was diagnosed, I resigned myself to dying.  My little brother, five years younger, who thought I was going to die, dropped dead himself (most likely of a heart attack) while I was going through chemo.  He hadn't been to a doctor in over 10 years and seemed healthy. Life takes many twists and turns and you never know what will happen.  My view was that if you expect the worst and the worst happens, you won't be surprised.  If you expect the worst and the best happens, you'll be happy.  My oncologist wouldn't tell me my chance of survival.  He said that if my cancer had a 90% survival rate, but if I ended up in the other 10%, the 90% survival rate wouldn't help me at all.  I later read that I had about a 9% chance that I'd still be here today with the stage I had (the highest possible stage).  But here I am.  Keep the faith.   

rcdeman
Posts: 257
Joined: Aug 2016

Wow, you are definitely a miracle. I am very happy for you although I am sorry about your brother. Your oncologist's outlook makes sense... but I don't know if I can make myself have that outlook.

MAbound
Posts: 963
Joined: Jun 2016

It's stories like yours that keep me going day to day and to just let what I'm dealing with sit in the background when I don't need to think about it. I'm so glad you and other ladies who have been NED for awhile come back to this board to retell your stories and let us know how things are going with you. 

Rebecca, again....breathe before you make any big decisions.  I don't know what you do for a living or what physical issues besides the cancer your mom may have to deal with, but you may want to consider  that your job would be useful for the social connections it provides you and as a distraction from these worries before you take a leave.

This roller coaster has a lot of ups and downs and the side effects from treatments don't last  the entire time between them. Your mom is going to want some control and independence during this for her own emotional well-being, so take your time and see how it goes for you both.

cindy0519
Posts: 173
Joined: Nov 2015

I was diagnosed with Invasive ductual carinoma ("IDC") one week after my 50th birthday last year, 2015.  I had a mastectomy of my left breast in early June and immediate reconstuction (Alloderm and Tissue Expander).  My reconstruction ended up being my "battle" with breast cancer as the cancer itself was down graded from Stage II to Stage I after surgery.  It was intially set at a clincial stage II due to the size of the tumor but when it was evaluated by pathology it turned out a lot of the tumor was in situ (not yet cancerous) thus the change to Stage I.  I need no further treatment for breast cancer other than staying on Tamoxifen (estrogen blocker since my breast cancer was estrogen receptive).  My "battles" (necrosis, infection, andwound dehiscence) with my reconstruction required 4 additional surgies and eventually led to the removal of the tissue expander in late Aug., 2015.  I thought I was free of all cancer related issues and ready to get back to "normal life" when I was  blindsided by with the UPSC diagnosis at the end of Sept during what was to be a routine gyn visit to monitor me while I was on Tamoxifen (one of the side effects of long term use of this drug is uterine cancer. Though they don't think it caused mine as I was only on Tamoxifen for a few months). I knew even before surgery that because my uterine cancer was serous (Grade 3) I would be facing chemo and possibly radation no matter the stage so I was prepared for this going into my surgery. 

Like so many others here I too had 6 rounds of chemo - mine was Taxol and Carboplatin.  Chemo was completed in late March and followed by 28 external radiation treatments which were completed in June.  My follow up CT at in early July showed NED!  My onco also does an exam every 3 months as follow up and will only do a CT or PET if issues arise.

I won't say it's been an easy journey the last year but it has been manageable.  I still worked full time and ran (I do a lot of 5K, 10K, 1/2 marathons normally) when I was able and have enjoyed time with my family.  This is doable depsite what Dr. Google (aka the internet ) has to say!

Don't be too hard on yourself either.  Being a caregiver is also difficult and emotional!  There is a quote I love because it is so very true in my mind...."when someone has cancer, the whole family and everyone who loves them does too."  Take time to care for yourself too - you deserve it!

rcdeman
Posts: 257
Joined: Aug 2016

Thank you for your story, Cindy. It's amazing how much you have gone through and succeeded. How difficult were the external radiation treatments after chemo?

I am trying to research the effectiveness of different treatments on late stage UPSC. So far, I've read and gathered some treatments that seem promising:
- platinum-based chemo in combination with paclitaxel with RT.
- carbo/paclitaxel x18 with vaginal brachytherapy or RT.
- carbo/taxol x 6 with BT or RT (not sure which is more effective, external or internal)
- "dose dense" treatment of carbo/taxol x6 with BT

From your experience and knowledge, what treatment seems to be most effective?

cindy0519
Posts: 173
Joined: Nov 2015

Rebecca,

I personally thougth the 28 external radiation treatments were not bad.  I was tired, had some diarrhea, and a bit nausea here and there but overall it was very manageable.  I had my treatments first thing in the morning and then immediately went into work. I was tired by 3:30 or so and often went straight home for a nap before eating dinner and going back to bed.

As far as an overall treatment plan goes, I too did TONS of research and was convienced that I wanted to do a sandwhich approach of 3 chemo cycles, followed by radation, and then another 3 chemo cycles. My gno onc recommended doing a 6 chemo cycles and then discussing raditation but I instisted on the sandwhich approach based on my research. She somewhat reluctantly agreed.  I also sought a second opinion (something I highly recommend your Mom consider too). The second opinion Dr. said there is nothing "wrong" with any approach - it's a bit like choosing a religion - none of them a "better" than the other and all are likely to have the same outcome, its just a mattter of personal preference and what works best for you. He did howevever point out to me rather candidly - that radiation will weaken the body to some extent (will vary by person) and this weakening could potentially make getting the remaining 3 chemo cycles much more difficult (again will vary by person).  He said very point blank "what is going to kill you in a distance recurrance (metastatic disease) not a local recurrence. If you have a local recurrence we can quickly and easily (in most cases) treat it with radiation and/or surgery.  If you cancer metastasizes it will be much harder to control. If it were me....I'd focus on treating the cancer systemically via chemo and then consider radation." He also sang the praises of my current onco and team and said no reason to change a thing in that regard if I need to run anything else by him at any time just call but I am in the best hands possible as is.  I made a call to my gyno-onco when I got to my car and said I wanted to do all 6 chemo cycles together and then do radiation and I never thought about it or allowed myself to second guess the decision again. 

I beleive all occurances of UPSC are treated with a platinum based chemo as that is what it is most responsive too.  Other than that, it is my belief that our cancer is as individual as each of us are.  What my cancer responds to anothers might not and so fourth.  This of course makes any form of treatment somewhat of a gamble so we must actively participate in our treatment by being open and honest with our treatment team.  Talk to the onco about what you have found, discuss each option and the side effects of each. Get their recommendations and perhaps seek a second, or even a third opinion if necessary, for your family to reach a level of comfort with the chosen treatment plan.  And once it is in place - keep communicating and be flexible. Nothing is in stone...if something isn't working or is making your mom very ill speak up and demand action if it is not immediately taken.  Treatment is rough but side effects can be well managed if everyone works together. 

Another thing I swear made a huge difference for me was integrative care.  I did accupunture, massage, and worked with a nutritionist from day one and still continue to do so. These services were available through my cancer centers integrative care program. Might be worth looking to see if the cancer center she will get treatment at has such services and scheduling a consultation with them.  A year ago I would have downplayed such services but I truly believe they helped keep nausea at bay, minimized the amount of neuropathy I have, and just helped keep my overall health as good as it could be considering all my body was handling at the time.

I hope this all helps! 

rcdeman
Posts: 257
Joined: Aug 2016

Thank you so much for your long informative reply, Cindy. I appreciate this a lot. I wil indeed take your advice and will drill the gyn/onc about the different treatments as well as getting a second and maybe a third opinion.

My mom has been coughing a lot these days, and I'm just afraid that it may be metastasis to the lungs. I will ask the doctor to do a scan. Do you know which scan is usually more accurate in determining metastasis and spread of UPSC? PET or CT?

MAbound
Posts: 963
Joined: Jun 2016

Here's a really good link that explains them and their pros and cons:

http://www.baymoon.com/~gyncancer/library/weekly/aa071601a.htm

cindy0519
Posts: 173
Joined: Nov 2015

Don't be suprized if her insurance requires (read they will only pay for) a CT and not a PET.  Dispite being diagnosed with two active cancers, my insurance will not pay for a PET scan so I only have CT's.  The CT's I get do usually include chest to pelvis so they do include a scan of the lungs.

MAbound
Posts: 963
Joined: Jun 2016

What you posted is just so timely for me as I've been reading about so many others having the 'sandwich" technique and was starting to second guess why it was never proposed for me. I've been wondering if I missed out on something that would give me better odds if I end up having radiation therapy. I will sleep so much better tonight because you took the time to share your story. Thank you so much!

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Here's an interesting angle on the pros and cons of the sandwich regimen. I have two oncologists, the gyn onc who performed my surgery, who is in a different city, and the local onc who oversees my chemo treatments near home. Before I started chemo they had a discussion (disagreement) about  whether or not to do the sandwich regimen. My radiologist explained that in general surgeons and radiologists prefer the sandwich technique because they're more aware of the need to zap the region where the cancer was in order to prevent local recurrence and sterilize the lymph nodes; oncologists, meanwhile, prefer to do the full course of chemo first because they are thinking about/responsible for the possibility of distant metastases. He also said that neither approach was more right than the other (that there is no conclusive evidence that one or the other is more likely to be effective). He claimed that he would stay out of the discussion and let the other two work it out. In the end, I believe the deciding factor was a PET scan that showed no activity except for pelvic/para-aortic lymph nodes that were already known to be enlarged, so the local onc was willing to go along with the sandwich regimen.

The radiologist also told me, very unhelpfully, that things might change anyway if I didn't tolerate the chemo well, which was likely. So far (knock on wood) he's been wrong about that last part. I believe that some of the people who choose radiology as a specialty do so because they don't really like to interact with people, and this is why their bedside manner often leaves much to be desired.

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Lol! That would explain my radialogy oncologist! Samdwich was never explained or given an option for me. As I've said before I didn't find this site until it was starting, the radiation that is. I haven't seen anyone else on this site having radiation after surgery and before chemo. Oh well, so far it has worked ok. Time will tell with me.

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

My advice is to disregard the stats and take things one step at a time.  I had small-cell undifferentiated carcinoma in 2009 and the stats were very dismal, some online studies indicating only a 2% survival after 5 years.  I'm glad I didn't read that until well after treatment!  The on-line stuff is out of date, and doesn't account for the individual and the latest expertise/technology/skills.

One step at a time.  :0)

 

rcdeman
Posts: 257
Joined: Aug 2016

Wow, you are definitely a survivor, survivingsu. I am unsure what the difference between small-cell undifferentiated carcinoma and UPSC is, but they both sound like it's the rarer more aggressive kind. Were you diagnosed at a late stage?

Asking for your prayers!
Rebecca

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

Rebecca, you have gotten a lot of great advice here. One question I have about your Mom's situation was whether she had a chest x-Ray before surgery. I'm not sure whether that would show a metastasis to the lungs. That might be a question for her doctor.

I have another Grade 3 cancer, clear cell. I have had chemo and radiation, both internal and external and have no evidence of disease over four years after my surgery. I now get a CT scan once a year.

Sue

rcdeman
Posts: 257
Joined: Aug 2016

Thank you for your story. It gives me hope. I am not really sure what the difference between Clear Cell and UPSC is, but I am very happy that you've been in remission for 4 years.

Best wishes to your continued health!

rcdeman
Posts: 257
Joined: Aug 2016

I have a short update and some questions:

Update:
So I went with my mom to the appointment with the gyn/onc today. Basically, he admitted that her staging is incomplete because he did not remove the omentum and para-aortic lymph nodes. This means it's possible that she could be Stage IV and not even know it. :/ I'm very unhappy about this, but I what's done is done, and we must go onto do what's best for her. So, the plan right now is to get a PET/CT scan done (approval will take 3 weeks, he says), and based on what the scans show, we would either proceed to:

1) If there are visible spots of cancer spreading that can be surgically removed, a second surgery will be performed before her chemotherapy treatment,
2) If there are no visible spots of cancer in the scans, we can go straight to chemo,
or
3) The worst case scenario, the cancer has spread beyond the point of surgery, in which we would just proceed to chemo.

I am praying for number 2, because then she won't need to suffer another surgery which would delay her chemo treatment as well as having to recover from a second surgery.

That being said, the doctor wants her to heal up a bit more from her hysterectomy a bit more before doing proceeding on to the next step. He says we will have to wait about 6 weeks after her first surgery before we can go on to anything else. Meanwhile, he'll be referring us to the medical oncologist to discuss chemotherapy treatment after PET/CT scan.

Okay, here are my questions:
1) How long did it take you guys to heal up from your hysterectomy?
2) And how long did you have to wait before you went onto the next treatment step (whether it be chemo, RT, or another surgical procedure)?
3) And finally, how long did it take your insurance to approve your PET/CT scan?

Thanks all! Still need your prayers that during these next weeks the cancer hasn't metastasized anywhere and is contained.

Rebecca

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Rebecca, it took me about 4 weeks after surgery to feel like myself and to start working again (part-time at first). Here is a summary of my timeline:

9/3 - D&C

9/8 - Diagnosis of uterine carcinosarcoma (aka MMMT) received

9/10 - Appt w/Gyn-Onc

9/19 - CT Scan

9/23 - Surgery (TAH-BSO + 14 lymph nodes)

10/7 - Follow-up w/Gyn-Onc - treatment planned / allowed to return to work

11/4 - 2nd opinion appt

11/11 - Port-A-Cath implanted in chest

11/12 - 2nd opinion diagnosis received

11/20 - 3rd opinion received

12/1 - started chemo

As you can see from this timeline, it took about a week for the first CT scan to be approved. My understanding is that my insurance doesn't cover PET scans unless they are considered absolutely necessary by my gyn-onc. I've had 3 CT scans so far and they've all been scheduled and approved very quickly.

My chemo treatment was delayed about a month because the 2nd diagnosis came back different than the 1st (high-grade endometrial stromal sarcoma) so I had to get a 3rd. Ultimately, that 3rd one confirmed that it was uterine carcinosarcoma so I finally started treatment. I don't know if that delay will make a difference in the long run (I am currently NED) but it was important to me to wait because if the 2nd opinion had been confirmed, then the treatment would have been much different.

Hope this information is helpful to you and your mother. Kim

CheeseQueen57's picture
CheeseQueen57
Posts: 869
Joined: Feb 2016

We waited about 5 weeks after my surgery to start chemo. You want to be pretty well healed. I went to Italy 3 weeks after my suurgery.  

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