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

Double Whammy said:

Suggestion

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

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.

janaes said:

From what i understand chemo

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.

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 said:

Hi, derMaus

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

 

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. 

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  

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   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

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 said:

I am so sorry you have been

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

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!

ryee21 said:

good to know..thanks. I am scheduled for taxol/carbol

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

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