Newly Diagnosed

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

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

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.

kahea said:

Hi Judy,

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.

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.

I am in the beginning of my journey too

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

judyv3 said:

Saw the Gynecologic Oncologist

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.   

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. 

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.