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Just Diagnosed

slacaze101's picture
slacaze101
Posts: 6
Joined: Mar 2016

Hello All,

I am 39 yrs old, (will be 40 in Sept). I was diagnosed with PCOS in 2007 and never had a pregnancy. For years I had irregular periods.

I was just diagnosed with Uterine cancer yesterday after a biopsy revealed abnormal cells. I go to see a specialist on Monday for my first consultation. I have been experiencing heavy bleeding. I also have been nauseous after eating and have had extreme hip pain in my left hip. Is this something others have experienced?

Would appreciate any advice. Also, questions to ask the specialist.

 

 

Thank you!

SL

CheeseQueen57's picture
CheeseQueen57
Posts: 474
Joined: Feb 2016

Sorry to have to welcome you to this group. But you'll find lots of people to support you here. 

What type of tests have you had?

What type of specialist are you seeing?

Have you seen your pathology report?  I would suggest you get copies of all tests you have done. CDs of any ultrasounds, MRIs, CT Scans

EZLiving66's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

I'm so sorry the test results came back positive for cancer.  For some, a hysterectomy takes care of it with no further treatment needed.  For others, it's more advanced but treatment is available.  There are several women on here who were diagnosed with a high stage and high grade cancer who are doing great ten years later.  When my biospy showed cancerous cells my gynocologist referred me to a gynecologist/oncologist who did a total hysterectomy using the DiVinci robot.  I was diagnosed with Stage II, Grade 3 UPSC - uterine papillary serous carcinoma.  It's a more aggressive uterine cancer so they started me on chemo right away.

I suggest you take somebody with you when you go to the doctor.  So much information is given so quickly with many words you've probably never heard before.  Write down your questions and write down (or record) what you're told.

Remember this is not the end of the world.  Many people have lived long, healthy lives after being diagnosed with this disease.  Everybody can use more friends when you're diagnosed with cancer and we're here for you!!

Love,

Eldri

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

While no one wants to be here, I am glad that you have found this board.  It's a great place for information and support.  We all know the shock of being diagnosed with cancer, and the beginning of your journey is in some ways the hardest, not knowing what is to come.  The internet can be a great source of information, but it can also be scary.  There is still a lot of outdated information out there when it comes to uterine cancer, so don't make yourself too crazy if you are the type that likes to research.

It would be good if you took someone with you to be a second set of ears.  If the doctor will let you, I would suggest recording your appointment as well. There is usually a lot of information to take in, and I have found it useful to replay appointments. I echo CQ's suggestion to get copies of all of your pathology and scan reports.  They will come in handy should you decide to get second opinions.

As far as questions to ask, I would ask what kind of cancer you have and what grade it is.  The grade will tell you how aggressive the cancer is.

I would ask what treatment is being suggested and what the goal of that treatment would be and if any other diagnostic tests are required, i.e., scans, ultrasound, etc.  CA-125 is a blood test for cancer that is often done as a matter of course, though it is not always a good indicator.  For instance, mine was only 8 before surgery, 6 during chemo, and after treatment, it was 7.  Normal is anything 35 and below.

Most importantly, be your own best advocate.  You may run into roadblocks of all sorts on your journey, but be strong and persevere.  You are stronger than you think.

Chris

  

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

Hi slacaze 101, I echo everyone's sentiments that we are glad that you found us but so sorry about your diagnosis. Everyone has given you spot-on advice for this early stage of your journey so my only recommendation would be to take a small tape recorder to your doctor visits (or use your phone if it has recording capabilities). Tell the doctor that you are recording, of course.

I try to do that for all of my "important" doctor visits and it has been wonderful to go back and actually listen to what was said about a certain subject instead of relying on my memory or notes. There have been times when I listened to a recording and found that what I thought was said was not even close to the reality.

Please hang in there and try not to worry too much - I know, easier said than done. We are all here rooting for you!

Wishing you strength and good health,
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 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - June 2016
Radiation - External, 28 treatments, completed Mar 2016

slacaze101's picture
slacaze101
Posts: 6
Joined: Mar 2016

Thank you for all of your very helpful advice. 

To answer some of your questions, I am seeing a Gyn Oncologist on Monday and my husband is coming with me for support and another set of ears. I will ask if she will let me record our conversation and ask for copies of my pathology reports.

So far I have only had the biopsy which discovered the enitial cancer diagnosis. I believe I will know more after my consultation on Monday, as to what tests will be done. They think they have caught it early, however my uterine lining was at 50 mm, which I was told was exteremly thick, the thickest my doctor had seen. 

I am doing my best to stay positive, but the internet is indeed a scary place of information. I am trying to stay on trusted sites such as this one, American Cancer Association and the Mayo Clinic.

Thank you again for being willing to offer a stranger advice and share your own stories.

SL

 

Brighton
Posts: 15
Joined: Mar 2016

Hello young lady.  I am sorry you are going thru this.  I am glad someone is going with you.  After I heard the word cancer I didnt here anything else.  Best to you and keep us posted.

Hugs Mary Ann

 

slacaze101's picture
slacaze101
Posts: 6
Joined: Mar 2016

I spoke with the specialist yesterday. While they don't know the stage, they know the grade. It is grade 1 and they will be doing a full hysterectomy. The doctor is confident that it has been found early and the chances of it coming back after the surgery are slim. They will know more of course once they do the pathology. Thank you for your support!

 

Shannon

EZLiving66's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

That's wonderful!  The hysterectomy for me, was the easiest part of this whole journey.  I had robotically assisted surgery, using the DiVinci robot.

Good luck and keep us informed!!

Love,

Eldri

ConnieSW's picture
ConnieSW
Posts: 1203
Joined: Jun 2012

you would congratulate someone on stage 1 uterine cancer but that's just what I'm going to do.  You got the best case scenario and I'm happy for you.  For me, the surgery was not bad.  You just want to do what you are supposed to so you will heal well.

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

Shannon, that is the best news you could get at this time.  Now just prepare for surgery and recovery from that.  One step at a time!

Chris

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1322
Joined: Jun 2015

Great News Shannon! Congrats on having a grade 1. I agree with Connie, that sounds so strange but it makes perfect sense. lol

Please come back with any questions as you move through your steps. Everyone is different, but there are a lot of things that are very much the same. So someone will have an answer for you.  My sister was a stage 1b, grade 1 and she had a full hysterectomy but did not require chemo or radiation. I'm hoping that will be the same for you!

Please let us know how you are doing.

Love and Hugs,

Cindi

Donswife48
Posts: 268
Joined: Nov 2015

I agree, congratulating you on a cancer diagnosis isn't something we do, but yes to grade 1.  Your wonderful smile will continue for a long time.  Hugs Nancy

slacaze101's picture
slacaze101
Posts: 6
Joined: Mar 2016

Has anyone else experienced dibilitating cramps, shooting pain in their lower back and hip? I was completely knocked down by this pain over the weekend, over the counter meds did nothing to alleviate it. Also had loss of appitite and nausea. Any feedback would be helpful. 

Shannon

 

EZLiving66's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

I'm sorry you're going through all this pain!!  Are you seeing your doctor soon?  I would certainly let them know about this.  As I've said before, I had no pain, nothing at all like you're having.  Maybe you have a pinched nerve??

Love,

Eldri

slacaze101's picture
slacaze101
Posts: 6
Joined: Mar 2016

I have my surgery scheduled for May 4th, but I don't see the doctor again in the interval. I am not sure if it is related to the cancer or something else. I am calling my doctor today.

Shannon

molimoli
Posts: 514
Joined: Aug 2014

Sorry you had to join us, but this is a great place to be. Take deep breaths often, read the back posts , don't make any decisions on treatment from a position of fear,no matter how brilliant your doctors are, you owe it to yourself to ask and get answers to the BECAUSE,the WHY,the EXPECTED OUTCOME  and how many patient he/ She has treated with same method that has met  at least 75% of the expected outcome.

Make all decisions with an informed  head.

Then finally make peace with the reality of Cancer  and be ready to fight  this beast wisely.

You are young,it was caught early ,you are in a good position to pick a fight with cancer , be it with conventional and or alternative treatment , complimented with the right foods. I wish you NFED (no further evidence of disease)

Moli- welcoming and hugging you. We have been there and done that, calm will find you with time ,you'll see.

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

Hi Shannon, I had no pain, just excessive bleeding which caused anemia. Maybe a call to the doctor is in order?

Soup52's picture
Soup52
Posts: 676
Joined: Jan 2016

Yes, I had some pain even before surgery. I also had a lot of trouble with food. I wasn't hungry and was full quickly. I also lost a fair amount of weight as a result. I also had a longer wait for surgery. By the time all tests were done I didn't have surgery until the middle of October. Maybe it was delayed a week or two because of my daughter's wedding which was Oct 4 but my actual symptoms started in mid July.  

I also was very tired. I received 2 units of blood after surgery which I think was part of being tired. While I did have some bleeding which had sent me to the doctor originally, it wasn't extreme. You are not alone. Let the doctor know how you are feeling. In retrospect I wish I had said more about pain and being so tired. Perhaps I could have had a transfusion before I even had surgery.

Gardena
Posts: 98
Joined: Jan 2016

Hi Shannon - I'm sorry you're in pain.  I had debilitating pain when my symptoms hit. When dx  my onco gyno told me the pain was contractions - my uterus was attempting to eject the tumor! Could be the same for you?  Surgery took care of all the pain I was having. Unfortunately,  no pain meds touched the contractions. Perhaps talk to your doc...soon! Maybe he/she can offer help. I hope so. 

Soup52's picture
Soup52
Posts: 676
Joined: Jan 2016

Good points Gardenia! I should have added that after the surgery and just a little pain with recovery, I felt almost like my old self. No pain

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

on this journey. I'm just home from my diVinci recovering from the surgery and now waiting for the pathology that determines the next steps on this path. WAITING, WAITING.  I echo the suggestion to tape Doctor conversations. My husband taped the post surgery consultation which was helpful for me to hear as I was out of it. I'm two days out of surgery and now mostly on just Tylenol. Not terrible pain - mostly discomfort. Before your surgery pamper yourself a bit! You have received good news so far!  I had lots of strange sensations, pains before surgery - not sure why. Good luck. 

cindy0519
Posts: 166
Joined: Nov 2015

Just wanted to stop and say welcome!  Sorry you found your way here but its a great place to find. 

Hope your pain has resolved or at least controlled.  It sounds like others have given you great advice.  There is so much to take in and process it is over whelming at times and that is when this board is most helpful. 

Thinking of you as you await surgery! 

 

 

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