Diagnosed with Uterine Clear Cell (UCC) with Serous (USPC)

Options
Hi All, unfortunately I am diagnosed with UCC and USPC. It took five months to get my doctors to tell me the exact medical term so research was weak. I found out on March 30 2016 that I had cancer. I started bleeding that led to a check up. Then the horrible news that no one is ever prepared for. The only thing I don't understand is the cancer was never identified until now with it technical name. It was changed 4 different times on my chart.. claimed they didn't know until the pathology. Without going through all terrible events, I had a radical hysterectomy on June 13th. I felt miserable after surgery and it took me a long time to heal and to get my head around this disease. The doctors do not know how I got this. They continue to be vague on the matter. I have an Oncology surgeon, an Oncology MD and a Pharm MD and all the info is different all the time.

I am stage 2(b) but the surgeon said no one uses the (a,b,c,d) anymore.. does anyone know the alphas stand for? My apology if I sound uneducated on this. I am alone in this battle and I have no support. I have a 17 yr old who I do not want to burden. They wanted me to start chemo right away. I didn't, because the data provided was inconsistent and not accurate especially for the type of cancer that changed 4 times on my chart . My lymph nodes were not affected then and it has been close to five months now. During this time, I wanted to find an alternative method and also, I got a second opinion from another Oncologist and what he told me in plain english was, the cancer is gone because of the radical hysterectomy but, I am still stage 2 (forgot to ask why). I can assume it is because of USPC and UCC fast growth; they are afraid a few cancel cells are floating around. I was told by the surgeon and the 2nd opinion, it is a 50% chance it will come back without treatment and it will be too late. I had the surgeon do another biopsy to see if any cancer cells have grown on the walls where my uterus was. Tests are not back. I changed my eating, lifestyle and de-stress and hoping it will make a difference. (Foolish, I guess).

The chemo recommended is the usual taxol/carbo, 6 times, once a month and 3 months of radiation. I worry because I have other chronic illnesses i.e., liver disease, chronic cornea pain from Trigeminal Neuralgia that is still incurable. I don't know what to do. It may sound silly but mistakes were made before in the past. Doctors have said chemo won't affect these diseases but... it is my liver.

I don’t know what is preventing me from doing the chemo. Every time I am ready, I get a bad feeling. Is it just fear or intuition? I feel lost. I know this may seem stupid but I worry. I hope I did not wait too long but the lack of info was terrible and the chemo class I went to was awful. Can anyone tell me what to expect with taxol/carbo or give me any info on what to do? Thanks for any advice. RY
«1

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
    edited November 2016 #2
    Options
    RY, first, please know you

    RY, first, please know you are not alone.  You have come to a place where these women (and there are a few good husbands on here) who understand everything you are saying.  This disease, the treatment - very scary!!!!  

    I wouldn't say trying to change your eating, lifestyle, etc...is foolish.  I think you would find we all will cheer you on and you should try to do whatever you want to help you fight this disease.  I believe most women on the board have had the same prescribed regiment for their treatment of this disease unless they had side effects that made them change.  

    Healthwise you do have a lot going on, so it is understandable that you and the doctors all have that in mind.  Please try to take a breath.  We are here for you.

  • Soup52
    Soup52 Member Posts: 908 Member
    edited November 2016 #3
    Options
    Did the doctors say anything

    Did the doctors say anything about the pelvic wash? Was the second opinion at the same hospital? If it was maybe you want to send test results to another center, too. As far as chemo goes I can tell you, while it was no picnic for me it was not as bad as expected for me. I was still able to enjoy life through it. Hmm interesting about the letters. I am considered 111C and my center still uses those. You can look on the American cancer society site for info about the different cancer stages and you will find info about why yours is stage 2. Also you'll find a thread on our site called ladies going through chemo. You'll find it effects everyone a little differently. Another thing about me- I have only one kidney, so I always remind my doctors of that and so far none of my treatments have damaged it as far as blood tests are done and my faction is still normal. Best of luck to you and keep us posted on your decisioN. this is the club that none of us wanted to join but all the members here are wonderful and so supportive.

  • SettledSue
    SettledSue Member Posts: 55 Member
    Options
    I'm sorry you are going through this

    I have clear cell endometrial cancer, diagnosed 3/28/12. I had chemo and internal radiation as my frontline treatment. A year later I had external radiation when it was determined that the area in my vagina that was slow to heal from surgery was cancer. My side effects haven't been too bad from any of the treatments. I too was most afraid of chemo, but the only lasting side effect from that is mild neuropathy in my toes. Good luck to you. Sue

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    Options
    Understanding staging

    Hi ryee21, here is what I found online: Stage IIB cancer involves the uterus and extends into deep layers of the cervix.

    Everyone has to make their own decisions about what type of treatment is right for them. I ended up having three opinions and having a piece of the tumor tested against a panel of chemo meds before deciding what was right for me. I have been NED (no evidence of disease) since the end of treatment in May 2016. 

    We all understand your anger and frustration that this cancer treatment process is not more clear-cut. Unfortunately there is a lot of educated guessing that goes on. Don't hesitate to get a second (or third) opinion from an expert in UPSC to help you decide. Wishing you peace and strength, Kim

  • ryee21
    ryee21 Member Posts: 21
    Options

    RY, first, please know you

    RY, first, please know you are not alone.  You have come to a place where these women (and there are a few good husbands on here) who understand everything you are saying.  This disease, the treatment - very scary!!!!  

    I wouldn't say trying to change your eating, lifestyle, etc...is foolish.  I think you would find we all will cheer you on and you should try to do whatever you want to help you fight this disease.  I believe most women on the board have had the same prescribed regiment for their treatment of this disease unless they had side effects that made them change.  

    Healthwise you do have a lot going on, so it is understandable that you and the doctors all have that in mind.  Please try to take a breath.  We are here for you.

    thank you for responding.
    You are right. There isn't any other way, is there? Truly, thanks again. -ry
  • ryee21
    ryee21 Member Posts: 21
    edited November 2016 #7
    Options
    Soup52 said:

    Did the doctors say anything

    Did the doctors say anything about the pelvic wash? Was the second opinion at the same hospital? If it was maybe you want to send test results to another center, too. As far as chemo goes I can tell you, while it was no picnic for me it was not as bad as expected for me. I was still able to enjoy life through it. Hmm interesting about the letters. I am considered 111C and my center still uses those. You can look on the American cancer society site for info about the different cancer stages and you will find info about why yours is stage 2. Also you'll find a thread on our site called ladies going through chemo. You'll find it effects everyone a little differently. Another thing about me- I have only one kidney, so I always remind my doctors of that and so far none of my treatments have damaged it as far as blood tests are done and my faction is still normal. Best of luck to you and keep us posted on your decisioN. this is the club that none of us wanted to join but all the members here are wonderful and so supportive.

    no. they geared me towards chemo

    No pelvic washed I guess that being radiation? What is it?  I went in for radiation consultation at another hospital..not sure we can talk about hospitals. She offered radiation and it sound better than the chemo but she said it would it can recur again in two years. She Recommended chemo. I asked if I could do the radiation first  before chemo and she said no, i would have to repeat radiation...made no sense then. All doctors are pushing the chemo. I just had no info to know exactly what I have until now.  Last night after I wrote this, I figured no matter what, I have to do chemo.  Thanks for the encouragment. Truly RY

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited November 2016 #8
    Options
    Welcome ryee21

    I am so glad you found this group.  You have already heard from several wonderful ladies and though I am so so very sorry you have found the need, I think you'll be greatly comforted by just being able to come and be yourself.

    Everyone is different, every cancer is different, everyone reacts differently to treatment but there are some amazing threads that can help.  I can still read for hours a day.  I was diagnosed April 4th and had surgery April 28th and started chemo June 24th.  I have Endrometroid Adnenocarcinoma stage 3a, grade 3 (yes, they still use the abc's here) I had 6 cycles carbo/taxol and finished Sept. 21st.  I was also given a 50/50 chance of recurrence if I did nothing but surgery.  They said with the chemo they were giving me 25% better chances that it would not return.  I talked with my naturopah and she said that an integrated approach is very helpful, so while they were going after the cancer I was taking supplements and doing acupuncture and IV therapy in between stopping 48 hours before and waiting 48 hours after each treatment so as not to interfere in any way and it helped to support my healthy body and lessen the effects. 

    I was very apprehensive and had all the same questions and worries- please know that is normal.  I hope you will be kind to yourself and use your self talk to build yourself up :D  Nothing is stupid or foolish or anything else.  You are facing something totally new and it's ok to have questions and search for the right thing for you.

    I think all the things we do outside of actual treatment help us take our power back and give us a sense of control in an out of control situation.  

    You will probably start hearing people talk about having positive thoughts, destressing, not worrying, living for the day, gaining an attitude of gratitude etc. etc.  It may seem impossible but it happened for me and my prayers are that it will happen for you and that you will find peace for the journey ahead.   Albert Einstein said, "There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle."  (((HUGS)))  Come back often and we'll link arms and walk along with you <3<3  :D

     

  • ryee21
    ryee21 Member Posts: 21
    edited November 2016 #9
    Options

    RY, I too have a diagnosis of

    RY, I too have a diagnosis of Stage II, Grade 3 UPSC (it's always Grade 3 for UPSC).  I had a complete hysterectomy done on September 30, 2015.  My gyno/oncologist suggested six rounds of Carboplatin/Taxotere but no radiation.  He also felt that he had gotten the cancer with the surgery but said there could be cancer cells floating around and he wanted to kill those before they attached to an organ and started to grow.  He said he didn't recommend radiation since he wanted to save that IF the cancer metasized.  

    Long story short, I made it through three of the six chemos before I got REALLY sick.  My liver started to fail.  I had every side effect those chemo drugs can give a person except mouth sores and death.  My finger and toenails even fell off!!  My GP told me the oncologist's job is to kill the cancer; her job is to treat the whole me and she advised that the oncologist was killing ME.  She even thinks I had a small stroke (small amount of blood bleeding into the brain when they gave me chemo and my blood pressure was 220/170).

    I still deal with some of the side effect - neuropathy being the worse.  I don't have to walk with a cane anymore after I went through eight weeks - two times a week - of physical therapy to get my balance back and strengthen the left side of my body.  The neuropathy causes pain in my feet along with numbness and numbness in my fingers although that seems to be getting better, little by little.  I see my GP next week for a full blood workup to see if my white and red blood cells are back to normal.

    My oncologist also gave me the same odds - 50% if I did nothing but 80% to 90% if I did the six chemos.  I'm hoping my 50% jumped to 70% just doing the first three chemos.  My three month checkups have all been clean.  I haven't had a CT scan since a year ago which showed no other cancer activity.  My oncologist doesn't believe in doing additional scans unless there are symptoms.

    You are not alone!!!  We are here for you and, collectively, we have been through just about anything this d*mn disease can throw at you.

    Love,

    Eldri

    Geesh. Eldri!
    I actually read yours before I sign up and it scared me. They never gave me a grade for the serous but I never knew until later. thanks. RY
  • ryee21
    ryee21 Member Posts: 21
    Options
    Kvdyson said:

    Understanding staging

    Hi ryee21, here is what I found online: Stage IIB cancer involves the uterus and extends into deep layers of the cervix.

    Everyone has to make their own decisions about what type of treatment is right for them. I ended up having three opinions and having a piece of the tumor tested against a panel of chemo meds before deciding what was right for me. I have been NED (no evidence of disease) since the end of treatment in May 2016. 

    We all understand your anger and frustration that this cancer treatment process is not more clear-cut. Unfortunately there is a lot of educated guessing that goes on. Don't hesitate to get a second (or third) opinion from an expert in UPSC to help you decide. Wishing you peace and strength, Kim

    tks-
    you did chemo? RY
  • Soup52
    Soup52 Member Posts: 908 Member
    edited November 2016 #11
    Options
    ryee21 said:

    no. they geared me towards chemo

    No pelvic washed I guess that being radiation? What is it?  I went in for radiation consultation at another hospital..not sure we can talk about hospitals. She offered radiation and it sound better than the chemo but she said it would it can recur again in two years. She Recommended chemo. I asked if I could do the radiation first  before chemo and she said no, i would have to repeat radiation...made no sense then. All doctors are pushing the chemo. I just had no info to know exactly what I have until now.  Last night after I wrote this, I figured no matter what, I have to do chemo.  Thanks for the encouragment. Truly RY

    Interesting about radiation.

    Interesting about radiation. I actually had it before chemo. Who knows every situation is different. I also have clear cell. Prayers that everything goes well for you.

  • ryee21
    ryee21 Member Posts: 21
    Options
    thank you for responding, really! ALL! thank you!
    HI Nellasing,
    I appreciate all you written, thanks! They will call me for an appt today. I can't take any herbs or supplements just one vitamin. The acupuncture sounds like a good idea but unsure they will approve. I will ask.

    After reading about everyone's treatment, i worry I waited too long. I am a bit angry. I don't understand why it took so long for the doctor to tell me the exact disease. I wasted so much time researching. I don't know how I plan to handle this myself.

    I can't changed what happened only move forward and hope they know what they are doing. That is another thing I worry about. I feel like it is a production line. I will ask my surgeon about the alpha. I'm still scared.

    Bless you all for sharing your story.. <3 - Ry
  • MAbound
    MAbound Member Posts: 1,168 Member
    edited November 2016 #13
    Options
    Hi

    The difference between chemo and radiation is that chemo treats cancer systemically (everywhere) and radiation treats cancer locally (i.e. just what it is aimed at). You have a very aggressive subtype of uterine cancer that most oncologists want to treat aggressively before it has a chance to metastasize because it becomes even harder to treat once that happens. Chemo has the best chance of finding microscopic cells and radiation focuses on areas that have the highest likelihood for being where recurrence occurs. 

    A pelvic was is when they inject a solution into the pelvic/abdominal cavity as part of a hysterectomy and then extract it to look for cancer cells under a microscope along with all of the other tissue that is removed during surgery. It tells the oncologist whether or not the cancer has migrated from the uterus to the abdomen and is likely to metastasize elsewhere.

    You don't really say what other health issues you already have that are making you so afraid of what chemo's impact would have on you, especially your liver.  We all react differently to chemo and/or radiation and things like age and underlying conditions are definitely things to give weight to. You can scare yourself witless with what you read here and elsewhere on the Internet, but that doesn't mean those things are definitely going to happen to you. You'll find a lot of tips here and from the chemo nurses that really help to get you through it as gently as possible. Remember, Eldri & I are both diabetic and that possibly put us at higher risk for developing neuropathy.

    If you haven't done so already, get hold of all of your medical records that you can. Get copies of lab work and other tests done, surgeries you've had, and especially the path reports when they staged your cancer. Go back and get records from your GP on tests and diagnosis you've had with him or other specialists prior to you cancer. They will help you to understand better what's going on with you than just what you're being told during office visits when that kind of information can be hard to absorb, understand, and retain. Those records will come in handy, too, when you perhaps go to other doctors in the future. 

    There are other ladies here who can give better advice than me on seeking complimentary/alternative care. A lot probably depends on where you live for what would be available to you. The most consistent advice I've seen is to find an ND who is board certified or specializes in oncology.

    I'm sorry you didn't find this site sooner. It sounds like you have really been suffering through this so far and I hope that you find the help and support here to be able to move forward and make the decisions you are faced with with some confidence. You are not alone here. 

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    Options
    ryee21 said:

    tks-
    you did chemo? RY

    Yes, my frontline treatment

    Yes, my frontline treatment was 6 rounds of chemo (Ifosfamide/Mesna/Taxol) and 28 external radiation treatments. My dx was carcinosarcoma (aka MMMT), stage 1b, grade 3. It's another aggressive type of uterine cancer. I was absolutely dreading the chemo but was lucky and had only minor side effects - and actually, those minor side effects were related to the Neulasta shot I received after each chemo treatment to help build up my white blood cells. I have no regrets in choosing the most aggressive treatment that my body could handle.

  • MAbound
    MAbound Member Posts: 1,168 Member
    Options
    PS

    You said you don't want to burden your daughter, but keeping her in the dark is likely not helping her. You're stressed and she'll be stressed too without understanding why. 17 year olds can be very sensitive to underlying currents in the home and can imagine much worse than the reality. She's going to want to be treated like the adult she almost is and to have the chance to be there for you as you've always been for her. This is just my opinion, but I can't help but feel that including rather than shielding her will help to keep trust between you so that you can support each other.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited November 2016 #16
    Options
    Welcome

    Welcome to the club no ones wants to be apart of.  But you have found a great place to find information, encouragement, and empathy.  Every one here really does understand.  Fear is a part of going through this.  My first gynocologist and GP thought my cancer was cervical.  After a D&C with a cone biopsy it was determined to be Uterine.  After surgery and the path report was back, it was,changed to Serous pappillary Endomedrial andocarcinoma.  My gyno- oncologist never really used the terms stage or grade.  He used high grade very aggressive in describing what I was up against.  I was so afraid of the word cancer that I wanted it treated in the most agressive way possible so I didn't do a lot of thinking about alternative treatment.  Everyone has to follow a path that they feel comfortable with.  And we are each unique individuals.   one treatment plan may be good for one person and not another.  

    You will find that you are much stronger than you ever imagined.  I do agree that it would be good to tell your daughter.  She will also be stronger than you can imagine.  You will need her for support.  My youngest daughter and she was 36, was a little unhappy that I told my work before my children.

    Hugs and prayers, Lou Ann

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    Options
    RY, I too have a diagnosis of

    RY, I too have a diagnosis of Stage II, Grade 3 UPSC (it's always Grade 3 for UPSC).  I had a complete hysterectomy done on September 30, 2015.  My gyno/oncologist suggested six rounds of Carboplatin/Taxotere but no radiation.  He also felt that he had gotten the cancer with the surgery but said there could be cancer cells floating around and he wanted to kill those before they attached to an organ and started to grow.  He said he didn't recommend radiation since he wanted to save that IF the cancer metasized.  

    Long story short, I made it through three of the six chemos before I got REALLY sick.  My liver started to fail.  I had every side effect those chemo drugs can give a person except mouth sores and death.  My finger and toenails even fell off!!  My GP told me the oncologist's job is to kill the cancer; her job is to treat the whole me and she advised that the oncologist was killing ME.  She even thinks I had a small stroke (small amount of blood bleeding into the brain when they gave me chemo and my blood pressure was 220/170).

    I still deal with some of the side effect - neuropathy being the worse.  I don't have to walk with a cane anymore after I went through eight weeks - two times a week - of physical therapy to get my balance back and strengthen the left side of my body.  The neuropathy causes pain in my feet along with numbness and numbness in my fingers although that seems to be getting better, little by little.  I see my GP next week for a full blood workup to see if my white and red blood cells are back to normal.

    My oncologist also gave me the same odds - 50% if I did nothing but 80% to 90% if I did the six chemos.  I'm hoping my 50% jumped to 70% just doing the first three chemos.  My three month checkups have all been clean.  I haven't had a CT scan since a year ago which showed no other cancer activity.  My oncologist doesn't believe in doing additional scans unless there are symptoms.

    You are not alone!!!  We are here for you and, collectively, we have been through just about anything this d*mn disease can throw at you.

    Love,

    Eldri

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    edited November 2016 #18
    Options
    ryee21 said:

    Geesh. Eldri!
    I actually read yours before I sign up and it scared me. They never gave me a grade for the serous but I never knew until later. thanks. RY

    But, I'm the exception to the

    But, I'm the exception to the rule.  Most people don't go through chemo with the problems I had.  As a matter-of-fact, my oncologist's PA told me I'm their poster girl for what's the worst that can happen (except dying, I guess - LOL).  There are women on this board who worked the entire time they were on chemo!!!  And, I had an oncologist who never gave me any alternatives that a LOT of other ladies here were offered.  

    PLEASE don't make your decision based on what happened to me!  My theory is that I was given the amount of chemo based on my weight (I am NOT a "little" lady - LOL) without taking into consideration that I have always been sensitive to any kind of medication.  A little goes a long way for me and based on that, they overdosed me.  I take blood pressure medication and I have to break the smallest dose pill in half so my BP doesn't take a nose dive.  

    Look at all the info and then decide.  

    Love,

    Eldri

  • janaes
    janaes Member Posts: 799 Member
    edited November 2016 #19
    Options
    Ry, Im so glad you made it to

    Ry, Im so glad you made it to the group with all your concerns and feelings.  It took a while to have my doctors to tell me what my diagnosis was.  One doctor told me totally different things than other doctors.  I was so mad for quite a while.  He told me i didnt need chemo at all and got all excited and had even told my work i wouldnt need it.  It seemed so unfair when another doctor told me that i did need chemo.  It wasnt until i had a tumor board of 7 doctors and a visit with another doctor and a clear picture of what my pathology report said along with the wonderful ladies on this board that i was able to make the desision to do chemotherapy.  Even after my desision to do chemo i didnt really want to do it, but knew it was the best desision for me.  I just finished all my treatments last thursday and as challenging as it was, i made it through them.   You can to if that is what you decide.  This is a great group to have for support.

    Hugs Janae

  • ryee21
    ryee21 Member Posts: 21
    Options

    I'm sorry you are going through this

    I have clear cell endometrial cancer, diagnosed 3/28/12. I had chemo and internal radiation as my frontline treatment. A year later I had external radiation when it was determined that the area in my vagina that was slow to heal from surgery was cancer. My side effects haven't been too bad from any of the treatments. I too was most afraid of chemo, but the only lasting side effect from that is mild neuropathy in my toes. Good luck to you. Sue

    thank you for the info..

    I am very afraid because I have other health issues. The thing is, I don't have any cancer even now 2nd pap smear, just done, is negative.  They took all the cancer out .. chemo is for insurance. They say since I am negative now, it best to treat it.  Once I get it, it will be too late.  That can't be true.  What about everyone here?  Lasting side effect is that mild neuropathy? numbness, tingling or ?  Thanks Roni

  • ryee21
    ryee21 Member Posts: 21
    edited November 2016 #21
    Options

    But, I'm the exception to the

    But, I'm the exception to the rule.  Most people don't go through chemo with the problems I had.  As a matter-of-fact, my oncologist's PA told me I'm their poster girl for what's the worst that can happen (except dying, I guess - LOL).  There are women on this board who worked the entire time they were on chemo!!!  And, I had an oncologist who never gave me any alternatives that a LOT of other ladies here were offered.  

    PLEASE don't make your decision based on what happened to me!  My theory is that I was given the amount of chemo based on my weight (I am NOT a "little" lady - LOL) without taking into consideration that I have always been sensitive to any kind of medication.  A little goes a long way for me and based on that, they overdosed me.  I take blood pressure medication and I have to break the smallest dose pill in half so my BP doesn't take a nose dive.  

    Look at all the info and then decide.  

    Love,

    Eldri

    ok. thanks

    What about cold caps.. did you try it?  with love, Roni