Desperate need for support and info

kfitton

Hi. I have been lurking on this site and find you all more positive and forthcoming than my doctors.  I need help and support.  I had a biopsy done by my gyn on April 4.  I was told I had hyperplasia with atypical cells, nothing to worry about but I needed to see a gyn/onc. Saw him on April 11.  Unbeknownst to me the biopsy report indicated borderline adenocarcinoma.  Had Da Vinci hysterectomy on May 22, his first opening.  He told my family the surgery could not have gone better.  One week follow-up appointment he stated I had endometrial cancer with lymph node involvement in the one node on right side that he tested.  Sent results to Mayo Clinic and said he would meet with me after he received the results.  Received results from Mayo on June 13.  Here are their comments, " the endometrial cancer is well differentiated and extensively invasive of the myometrium. Unique growth pattern, microcystic, elongated, and fragmented, MELF.  The cancer cells in the lymph node qualified for micrometastasis.  I would stage this tumor as pT1b, N1 (FIGO stage IIIc1).  My doctor is taking my case to tumor board on June 27 and said he believes there are more lymph nodes involved.  I will have a PET scan prior to tumor board.  I don't meet with him until July 5 but will talk on the phone to him on June 30.

I don't do well with not having all the information and can't wait until July 5 to get my questions answered and a treatment plan established.  My anxiety has gone through the roof.  Please, if any of you can shed some light on Mayo's comments or give me advice I would be highly appreciative.  This holding pattern is so hard.

 

TeddyandBears_Mom

kfitton, First of all welcome

kfitton, First of all welcome! I'm glad you found us. As you read through the threads, I believe you will find a sense of peace and hope. It is very natural to be afraid. And, the waiting is the hardest part. Once you have a plan in place, you will be amazed at how fast the time goes and before you know it, you will be through treatments. I highly recommend you ask for an anti-anxiety med. I never, ever used anything in my life and my sister convinced me to use Lorazapam. It truly was a life saver. I didn't use it every day, only when I felt overly anxious. And, once I started treatments, I was calm enough not to ever need it again.  Just so that you know, your timeline is typical. I was DX'd with cancer via a D&C on 5/28/15 and did not have my surgery until 7/21/17. My kind of cancer was the rare aggressive kind. I hesitate to comment on your pathology report. I'm hoping someone that has more knowledge than me will come along and provide you more information.

What I will tell you is that this is not a death sentence! They have made great progress and there are many of us survivors out here to help you along your way.  Please take a breath and take each step one at a time. Try not to read too much on the internet. Most of the information out there is dated. Feel free to come back and ask us anything. Someone will most likely have an answer.

Take care and please come back and let us know how you are doing. So sorry you are having to deal with this.

Love and Hugs,

Cindi

Nellasing

Hi Kfitton

I second what Cindi said and will add that it looks like your Dr. is really doing absolutely everything to make sure they get this right!  I ended up being a stage 3a grade 3 and finished chemo Sept. 21 and so far so good.  I did an integrated approach with a naturopath in addition to the other treatment and I believe it really helped.  Several of us have written about it in the threads here.

Please come back and let us know how things are going, ask questions, read the threads but above all else- know that the 1st part of this whole journey involves a lot of waiting and it really SUCKS but once you get your plan in place, as Cindi said, things really start moving along and before you know it you are through it.  We'll be right here with you.  (((HUGS)))

Soup52

Yes, your timing seems to be

Yes, your timing seems to be similar to mine. I know that waiting is the hardest part. Treatment can be tough at times but you will get through it. Yes lorazepam advice is good. I too never needed anything like that before my cancer journey, but I found occasional use very helpful. I'm one year out from treatment of clear cell 3C and so far I'm NED. Our prayers are with you! Keep us posted.

Kvdyson

It is quite normal to feel

It is quite normal to feel out of control when you get a diagnosis like this. Please know that we have all been where you are and we have come out the other side. There is no reason to think that your experience will be any different.

It's really important to wait for all of your test results in order to fully understand what you're dealing with. Once you have those, and have heard what your doctor/tumor board is recommending, you can decide if you want to get a second or third opinion (I ended up getting three). It's okay to get additional expert input on your diagnosis and/or your treatments - once you know what is being recommended first.

As you've probably heard more than once, this is a marathon and not a sprint. That is no joke. Getting your head wrapped around this diagnosis may be one of the hardest parts of the entire experience. We'll be here to help you as much as you need. Feel free to ask questions, to vent or just to check-in now and then. Nothing is off-limits here.

Wishing you peace and strength, Kim