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Newly Diagnosed

judyv3
Posts: 144
Joined: Dec 2013

Hi everyone.  My name is Judy and I was diagnosed yesterday with uterine cancer.  I am pretty much in shock.  In 2013 I was diagnosed with anal cancer and underwent the standard treatment for that.  I found the forum on anal cancer invaluable so I imagine this one will be helpful as well.  I am currently in "waiting" mode.  My gynecologist has referred me to a gynecologic oncologist.  Does anyone have any suggestions as to questions I should be asking?

I am concerned about the existing damage I have caused by the 33 radiation treatments I received and how it will affect my healing from surgery.  I had a CT scan of the pelvic area as follow up to the anal cancer in April and was given the all clear.  Sick joke, huh?

I look forward to sharing this journey/roller coaster with my strong sisters who have gone before me!

Thanks for any help.

Judy 

Northwoodsgirl
Posts: 506
Joined: Oct 2009

Hi Judy, We are a great group to get support from. Needless to say I am sorry that you are now faced with uterine cancer. There is a very good thread on this forum that provides many suggestions on what to ask and what to prepare for. The thread was from this year or last year. Maybe someone will paste the hyperlink to the thread.

Being a cancer survivor you already have a good base of knowledge but as we know all cancers are not alike. The most common therapy is carboplatin & taxol (6 rounds, each infusion is about 21 days apart). Some of us had 3 rounds of chemo over 3 months and then 26 radiation treatments and then 3 more rounds of chemo. All in all about 7 months from surgery to last chemo. Most of us have a total hysterectomy, multiple lymph nodes and para-aortic node and omentum removed.

Some of us were able to have minimally invasive laparoscopic surgery which is easier to recover from than a traditional open abdominal approach. We get a vascular port surgically placed for chemo (outpatient procedure) but some women choose not to. I had a port and was very pleased with saving my veins. Chemo usually starts about 3 or 4 weeks after surgery if I remember correctly. 

The fear and anxiety you must be experiencing will hopefully decrease once you have a treatment plan and know the stage and grade.

Just know the other uterine cancer fighters are here for you. ((Hug))

Lori

kahea's picture
kahea
Posts: 6
Joined: May 2018

Hi Judy,

Welcome to the group!  I am newly inducted into this group as well since May 9th was my diagnosis.  I am so sorry that you have to be here.  I found that many of the questions that i had could not be answered until after the surgery was done (june 7th) and pathology was back.  I see my gyn/onc the 22nd.  This part seems to be the hardest, just waiting with this heavy weight on your shoulders and not knowing what to do.  It almost seems weird to go about your regular life once this diagnosis hits but you are expected too because there is nothing else you can do.  Again, I am so sorry that you have joined this club but I have found it to be very supportive.

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

The waiting and wondering is the hardest part!  Once you know what you're facing, you can get busy making a plan and getting through it.

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

but it is unfortunate under these circumstances. Being Dx with anal cancer and now this, well, I am truly sorry to hear that. However, you may find out that you have a grade 1 and stage 1 cancer- the most treatable of all. Like most cancers, Uterine comes in different varieties, such as endometriod, clear cell, Uterine Papillary Serous and sarcoma. How was your cancer diagnosed? We’re you told what cancer you may have? You probably already know that until you have a hysterectomy and your tissues- including lymph nodes and pelvic wash - are examined, you are not likely to know what grade, stage or type of Uterine cancer you have. The waiting is horrendous- the very worse part of this journey. I was Dx with stage 3A (advanced) Uterine Papillary Serous carcinoma, a grade 3 or aggressive cancer. That was 4 years, 8 months ago and I am still NED.

Anal cancer is NO walk in the park. You can do this, Judy, but I sincerely wish you didn’t have to!

I wish you the best and please keep us posted. The beautiful, tough ladies on this Board are caring, knowledgeable and supportive.

Cathy

 

 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Hello, Judy, and welcome to this very supportive and knowledgeable group. I am sorry you have to be here. 

The thread I believe Northwoodsgirl is referencing is here.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2546
Joined: Mar 2013

Judy, you found a great group to help you in your journey.  You will want to know what kind of cancer you have - since you have, unfortunately, had to deal with cancer before, some of the terminology is familiar to you.  Take a breath, you are not alone.

janaes
Posts: 741
Joined: May 2016

Judy im sorry you have cancer again. Thats not fun. I just got done with some pocedures for a klnd od skin cancer, wich was my third cancer.  The interesting and crazy thing for me was i was in a follow up appointment for mt ssecond cancer ( uterine) talking with the doctors and feeling good that everything looked clear.  Little did i know rhat i had skin cancer on two places on my back.  I found out a few months later of the cancer. It was a little shocking and overwheliming to know i had cancer even though no one knew. 

I wish you the best as you go forward with uterine cancer diagnosis.

Janae

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

You are already a proven warrior!  You will find great support here.  I still keep a notebook by my computer and jot down things to ask my care team - things I have learned here, and they have been invaluable!  May I ask what your symptoms of the first cancer - the anal cancer - were?  (I had no symptoms of my endometrial cancer.)

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

I am in the beginning of my journey too

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

So sorry you have to fight another kind. You are correct in thinking this group will be invaluable. It helped me a lot when I was diagnosed in 2016. June 20th of this year I was 1 year NED. You already know to take one day at a time from having to do that before I imagine. As stated by others, carbo/taxol is the go to standard, and worked great for me (no bad side affects, other than hair loss, which is expected). You have found a great group to walk with during this journey. 

MrsBerry
Posts: 102
Joined: Dec 2017

Oh Judy, I am so sorry you are facing this Dx. Please keep us posted. 

judyv3
Posts: 144
Joined: Dec 2013

Update:  I appreciate all opinions!

 

I saw the doctor yesterday.  There is only one Gynecologic Oncologist in our area (Daytona Beach, FL).  Good news, I really liked him.  I will have to travel to Orlando or Jacksonville for a second opinion.  Because I had radiation for anal cancer, things are pretty complicated as far as surgery goes.  I have radiation damage to my lower intestines, bowel, anus, and bladder.  The concern is that disturbing any of those parts may cause nasty complications.  That being said, the doctor said he would only do robotic surgery because the incisions are above the radiation field and it is scheduled for 8/27.  However, he also suggested we try progesterone even though based on the biopsy from the D&C I am grade 2.  He is sending the biopsy from that D&C for further testing to see if it will respond to the hormone treatment.  If it does, then perhaps no surgery.  I was excited to hear that because I have been frightened about the radiation damage that already exists and no being able to heal.  Like I said the surgery is scheduled, I have an appointment with him on 8/8 and we will decide then if it's a go.   If the progesterone works, I am not sure how long I would have to be on it (one of those questions we forgot to ask).  But will discuss on 8/8.

 

Has anyone out there taken progesterone and what is your experience with it?  I am feeling like maybe I should risk the surgery just to be done with everything, but I am terrified of being left incontinent or worse.   

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

I had surgery, chemo, and radiation for my Stage 3c, Grade 3 Cancer. It reoccurred 8 months after my frontline therapy. I was given the choice of taking Megace. My tumor was hormone positive but because of my grade and age (60) doc didn’t think it would work. But it worked!  I have my next CT scan July 17. Fingers crossed. I’ve been taking it since September I think. Someone on this forum had it work for 5 years. Good luck. 

janaes
Posts: 741
Joined: May 2016

Im glad you like you doctors. That is so important. With my uterine cancer my doctor recommended that i dont have radiation treatment (external radiation) because i had radiation for my previous cancer 23 three years  tothe area right above that. (below my chest and above my pelvic area)  He would not do it. I respected his opinion enough that i went with that. It took alot of thought on my part to decide because i knew i had to live with the choice. After learning of other patients desions of radiation for them, i decided on no extermal radiation as the doctor recomemded.  I will be thinking of you as you go through these tough choices. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2546
Joined: Mar 2013

Judy, thanks for the update and, as said, I am also glad to hear you like the doctor.  Gyn oncs are not everywhere, in fact, the whole state of Alaska, the largest state in the union, only has two.  You are working with the doctor you need, and you concerns are legitimate.  

EZLiving66's picture
EZLiving66
Posts: 1322
Joined: Oct 2015

Glad to hear you have a plan in place.  Getting a second cancer just seems so d*mn unfair although I know many on here have had that happen.  Hopefully, the progesterone works!!

Love,

Eldri

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