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

ryee21
Posts: 21
Joined: Nov 2016

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2599
Joined: Mar 2013

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.

ryee21
Posts: 21
Joined: Nov 2016

You are right. There isn't any other way, is there? Truly, thanks again. -ry

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Soup52
Posts: 902
Joined: Jan 2016

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.

ryee21
Posts: 21
Joined: Nov 2016

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

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

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.

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

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

ryee21
Posts: 21
Joined: Nov 2016

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

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

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

ryee21
Posts: 21
Joined: Nov 2016

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

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

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

ryee21
Posts: 21
Joined: Nov 2016

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

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

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
Posts: 21
Joined: Nov 2016

you did chemo? RY

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Kvdyson
Posts: 789
Joined: Jan 2016

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.

ryee21
Posts: 21
Joined: Nov 2016

Did you try the cold caps?  I hate to bother you but can you tell me what I will need to do to prepare for chemo? I know I need to pick up my meds but I don't know what to do before that.  They say follow the scripts but I am too overwhelm and there is no one to help me except my son.  My family wished me good luck.  wtf? sob.. oh well.

I am labeled Endrometic Cancer with serous.  Just told two days ago grade 3.  I have to look that up.  This is so unfair! I seemed to have fallen into a depression. Have you heard anyone doing nutritional jucing.  I don't want chemo.  I have too many other health issues.

What upsets me is, gyn doc gave me estrogen when I was post menupausal and refused to give me progrestrone with it.  I believe it was from the estrogen given to me in 2013 when I was  post menpausal. Of course, denial it wasn't from that.  Sorry I think I am in the angry stage. :) thks for any help.

warmly, roni

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

Hi Roni, it's okay to be angry at this stage. Getting cancer is not fair. In time, once you get used to the treatments, you'll feel like you have a little control again and you may feel the anger going away a little. That will be good for you. I've heard that anger is like drinking poison and then hoping the other person will die. 

I didn't use the cold caps. The office where I had my infusions wasn't set-up for them and they are very expensive so I just learned how to tie head scarves by watching a bunch of you-tube videos. Losing my hair the first time was pretty traumatic but I just tried to remind myself that it meant the chemo was doing it's job and killing the cells.

I went through an orientation with my infusion nurses and they gave me a detailed calendar for when to take each pre-treatment med. It helped a lot. If you're not going to have an orientation then you may want to call them and write down the instructions on a calendar so that you can be sure to take everything timely.

Don't be too hard on your family. It's very normal for them to not know what to say or to do. I found that I had to be very clear and specific when I needed my husband to do something for me. Making him guess what I needed or wanted did not work. He was glad to help once he knew what to do. For moral/mental support, I joined four different online support groups. In that way, I could commiserate with those who understood what was happening and ask questions from the real experts. I hope that we are helping you in that way, too.

Hang in there. You are going to do fine and we'll be with you as long as you need us. Kim

ryee21
Posts: 21
Joined: Nov 2016

So it is for a pre-exisiting  condition.  I had a radicial hystrectomy.  I did have a pelvic wash after surgery.  All I have left is my vagina. Even now I am not myself. I just got hot flashes yesterday.  None of my lympth nodes are affected and  I am not convinced the dcotors working on me know much of this. In June, I had surgery.  They wanted to start me  Chemo with taxol/carbo right away but I had a really bad feeling about it.  I cancelled.  It is Nov and I am scheduled again for chemo and again a really bad feeling.  Did you do any chemo?  My 2nd pap smear 2 weeks ago came back negative. I have UCC with serous. I have both.  I was told they cannot determine where clear cell lands.  (As one doctor said, they wouild have to chop  me into pieces to find out.)  Is that right?   I am lost.  They took my cancer infected parts for study otherwise it would be toss out.  What would you recommend for another opinion?  What I don't like is it can reoccur even with checmo.. it isn't a cure.  Do you know anyone who did jucing.. change the biology? Thanks Roni

Nellasing
Posts: 529
Joined: Oct 2016

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
Posts: 21
Joined: Nov 2016

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
Posts: 877
Joined: Jun 2016

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. 

 

MAbound
Posts: 877
Joined: Jun 2016

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.

ryee21
Posts: 21
Joined: Nov 2016

Thanks for your comments.  I have all medical conditions gathered, surgeries everything. Nothing explains this but Estrogen given to me in 2013.  My son has been with me but it isn't going to be pretty and I don't want him to suffer my pain.  He of course wants to stay.  I am sensivie to medication. I have Trigmeminial Neuroglia, Neotropic Cornea and others none of it cured.  I tend to get the diseases no one hardly gets. I see what it is doing to him.. I don't like it. thanks.

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

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

janaes
Posts: 776
Joined: May 2016

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
Posts: 21
Joined: Nov 2016

yes, I would be upset too on what happened to you.   I am still on the fence.  I changed my diet hoping it will make a difference.  Who knows? I can't seem to make a solid decision on anything. Sorry not as strong as everone here. Worse no family to help execpt my son who is too young for this.. I guess I will figure it  out.  Roni

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

We will support you no matter what you decide, but here's a suggestion:  get a copy of your pathology report and surgical report and get a second opinion. Not a problem with a cancer diagnosis.  It sounds like you are confused about your diagnosis and recommended treatment.  Never hurts to have that second set of ears and eyes.  We can tell you what our experience has been and that means a lot of most folks.  You can go to the NCCN site and see what the standard of care is for the type of cancer you have, but a professional opinion and dialog is definitely in order.

Suzanne

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Hello,

I was just diagnosed with Undifferentiated Uterine Carcinoma (not sure what the acronym for that is) and am terrified, so finding this board was a godsend.

I have a PT scan tomorrow and, hopefully, a hysterectomy in the next 2 weeks. My onc has an excellent reputation but is not very communicative, and I'm confused about the possible sequencing of chemo-radiation-surgery. Would they do chemo *before* the surgery? I was told that's a possibility but would't doing the treatment, and waiting for it to take effect, delay the surgery ? All concerned want that ASAP. I appreciate anyone's feedback.

 

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

I'm sorry you had a need to find us but glad you did.  This site is a wealth of information and I wish I had found it when I was first diagnosed.  When I had my biopsy they thought I had Stage 1 regular old endometrial cancer.  But after the hysterectomy and that biopsy, they found it was UPSC (Uterine Papillary Serous Carcinoma) which is a much more aggressive uterine cancer and is always Grade 3.  Luckily, after the hysterectomy, they did a CT scan and didn't find anything else suspicious so "assumed" it hadn't spread outside my uterus and cervix.  That made me Stage II.  My gyno/oncologist recommended six rounds of Carboplatin and Taxotere but no radiation.  Others who have had the same thing as me were given other treatment.  You'll find that treatments vary from one country to another, one state to another and sometimes from one cancer center in the same city to another.  It's a real toss-up.  You can probably find a study that says eating turnip tops cures cancer but I've learned to take a lot of what the internet has to say with a grain of salt.  That being said, there are a lot of legitimate, peer-reviewed articles out there on new treatments and clinical trials that are working.

Please let us know how your PET scan turns out today - we're all in this crappy boat together so we might as well make the best of it and have a little fun!

Love,

Eldri

ryee21
Posts: 21
Joined: Nov 2016

see https://mdanderson.influuent.utsystem.edu/en/publications/undifferentiated-carcinoma-of-the-endometrium-an-expanded-immunoh

The cancer.gov or any other facility will have more info.  I am sorry.  My ONc is suppose to be excellent but hard to communciate tool.  I did a radical H. and were scheduled the same drugs that mos with my type are given. 

roni

If high-grade hopefully not,

janaes
Posts: 776
Joined: May 2016

From what i understand chemo comes after surgery.  Thats how it was for me and unless i am mistaken most if not all the women on this board have done chemo after sugery.  Hope fully more ladies respond to you as well.  If not you can start a new topic and they seem to respond faster to that.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

May I ask what your situation is? Have you explained it elsewhere and I can just look it up? This is the first place I haven't found "you'll be dead in 10 months", or worse.

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

Sorry for the reason you are here, but I am glad that you found us.  Many of us on the board have described our situations in our About Me page.  If you click on the username in a thread, it will take you to that page.

Most of the time the hysterectomy is done first, especially if a scan has been done and doesn't show any masses or tumors anywhere else.  Occasionally chemo is done to shrink a tumor prior to surgery, but I think that is more common with tumors or masses outside of the uterus.

Your scan will show if the cancer has spread, and hopefully it has not.  Staging will probably come after the hysterectomy.  Staging in essence describes the extent of the cancer; how far it has penetrated the endometrium, whether it is in the lymph nodes or omentum, or the ovaries, etc. The stage will help determine what kind of treatment, i.e., chemo and/or radiation your doctor may recommend.

I would suggest getting copies of all of your scans, pathology, tests, etc.  They will come in handy not only for your own records, but should you decide to get a second or third opinion, you will already have those in hand.

While the internet can be a good source of information, it can also be pretty scary.  Please keep in mind that the information you may find can be quite dated.  By the time studies are actually published, years can have gone by, and new treatments and regimens are being developed all the time.  Don't put a lot of stock in statistics.  There are a number of women here who have beaten overwhelming odds.

Take a breath.  It's all very unnerving at the beginning.  Many here, myself included, will tell you that the beginning is the hardest part to deal with, when all you have is a diagnosis and no real plan with a lot of information yet to come.

Know that we are here to support you in any way we can.  You can ask any question or just vent.  We are here for you.

Chris

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thank you Chris for reaching out so quickly. I love being able to see individual profiles! Hopefully I will become more familiar quickly with how the site works, and perhaps even contribute something on occassion. 

Nellasing
Posts: 529
Joined: Oct 2016

Hi,

You have already gotten really good information and I agree that surgery normally comes first- it did for me- then a healing period- they will be staging and grading the tissue that they take during surgery and from there your oncologist will be able to form a plan for treatment.

It is terribly frightening to hear those words and to have our human experience called into a sudden halt but I have found that it's just given me a deeper appreciation of every single person and thing in my life and as many many will tell you- NO ONE knows the expiration date and though some Drs will give you their best guess or give you statistics that doesn't mean anything because it doesn't take into account what YOU will do- how YOU will thrive and progress- how YOU will take control of your mind and situation.  Please don't lose sight of the fact that this is just another part of the journey of your life and it's up to you how you want to do it.  We've all walked these same scary first moments but as you read you will see that though they are similar there is not one that does it the same :D 

We are here for you- please come ask your questions, share your fears, feel the support for it is here- we'll all link arms and walk along.  You should find that everyone you meet in connection with your care is extremely kind and helpful.  If that is not the case they may not be the perfect match for you- don't be afraid to find the right fit for you.

Take courage - you will find that once you get your feet under you again you are stronger than you can ever imagine you are!

(((HUGS))) and prayers as you go through your PET Scan <3 <3  one day at a time has helped me ALOT- just one day- don't look too far ahead because TODAY is the only day any of us really has <3 <3

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

Hello derMaus - Welcome to our board and sorry you have the need to be here. This is a wonderful place to come to for support, love, answers and venting. As others have said, the first part of this journey is the hardest. Once you know what your cancer is - the stage and grade and a plan is put into place, you will feel a lot better and will be prepared to fight and thrive. 

Please come back and let us know the results of your scan. And, ask us anything. Someone will most likely have an answer.

Love and Hugs,

Cindi

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thank you all for the warm welcome. Honestly this forum is the only thing that's standing between me and complete meltdown at this point. I had a super-stressful job from mid-2013 to early 2016 (interim position, devastated to not be given the permanent position). I can't help but think the stress of that situation didn't help one damn bit. Had ankle reconstruction earlier this year w/protracted recovery, then my mother died unexpectedly mid-September, then this situation 7 weeks later. Truly I would be in padded room somewhere if I hadn't been able to find some positive outlooks, since they certainly aren't to be found anywhere else. My CT scan was this morning and I came home to a pre-op appointment next week, then hysterectomy on the 28th. Thank god I'll be getting it out, but I'm terrified that it's spread all over -- my uterine lining was 2.4 cm and I have a 5 cm mass with increased vascularity, unknown to be fibroid or not.  Has anyone here come back with an initial diagnosis of Stage 4? That's what really has me worried, along with the rest of it of course. Thank you all again, this is such a bright spot!

janaes
Posts: 776
Joined: May 2016

I am so sorry you have been through so much.  Sometimes this stuff doesnt seem fair at all.  I didnt go through the same thing you are going through but i know stuff on top of cancer just really stinks.  I had seperated from my husband just months before my diagnosis and was a single mother at the time.  At first i was so mad i had to do both at the same time.   I want you to know i am thinking about you and hoping that you will feel comfort as you deal with all this.  Know that your feelings are okay to have and that its a part of all this.  For me as i faced and felt my feelings i was able to do better.

Lots of love, janae

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thank you Janae. I don't know why I put all that stuff out there, just to say that I was super stressed before this began and have absolutely no reserves left to deal with what's going on now. Usually I'm pretty stoic and self contained but this one is a humdinger. I feel fortunate that I don't have children, though, or even my mother now: it would be horrible to have to care for others while dealing with this yourself. I'm blessed to have a good job that will work with me, very good insurance, and access here in So Cal to numerous treatment options. All that said, this Board is the best resource out there. You rock!

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

Welcome to this little club that no one wants to belong to, but glad that you found this spot.  It is a great place to come to for support, information, encouragement, and just plain having someone to listen to you.  Ask, scream, cry and vent when you need to, someone will be here to listen and give you hugs and,encouragement.  Stress really does not help and you certainly have had a lot lately.  As hard as it is, try to,take,one,day at a time.  I was diagnosed a little,over 4years ago with Serous Papillary Endomedrial andocarcinoma  stage IV. High grade and I am still.here.  I have many more good days than bad. I have had a few months of NED and,have,been on almost constant treatment for,the,last 3 years.  I have found out that I am much stronger than I,ever though I could be.  I have gotten to welcome and cuddle four great grand children.  I have found out that I have,many freinds and an amazing husband and,family.  We are all scared at first, but life,does go on.  You will.amaze yourself with how.strong you,will be.  It does,get easier when you know the whole picture.

Hugs and prayers, Lou Ann

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