Help - Don't Know Where To Start

woodstock, it is all overwhelming but try to take a breath.  Lots of good women and family here to support you and lots of ears to listen.

cmb mentioned it, but I would start by asking to work with a gynecologic oncologist.  They specialize in gyn cancers - they are who you really want to be working with.  Like cmb I had a CT scan prior to surgery as well, a few other tests to prep, but they really won't know anything until they get in there and see what is going on to determine exactly what kind of cancer and stage.  

Hopefully you will have someone with you to act as a second set of ears and can take notes.  Please, please let us know how you are doing and if you have questions.  Uterine cancer support - chats and such - are not as prevelant as BC, but this is one of a few places you can ask anything. 

Again, try to take a breath, you are not alone.

My timeline was very similar to what you've seen here already although I did have a pre-surgery CT scan. I believe the CT scan changed the sequence of treatments. My clinical diagnosis was stage IIIC, FIGO Grade 1. After surgery and pathology report it changed to IIIC2, FIGO Grade 3.

I have viewed the waiting for results as the toughest part of my treatments but I've only been in the fight for 6 months now--my surgery was 1 Dec. You are on a good site. The ladies here willingly offer their experiences and support and love. I hope your test results are good!

Cheers,

Deb

Woodstock, please write as much as you want and ask as many questions as you want, and no one cares about typos. I am so sorry for what you have been through and what you are going through now.

I had a CT scan after my D&C and before surgery. The CT scan was on a Friday,  less  than a week after the D&C. I got my results in a couple of days, and the surgery was few days after that. with the surgery pathology results in another couple of days.  I think that's a faster timeline than usual, but I was terrified and wanted to get the whole thing over as soon as possible. I knew before the hysterectomy that I had a rare form of uterine cancer for which chemo and radiation was always recommended, but I didn't know the stage until after the surgery, because a lot of the information they need to stage the cancer comes from what they learn during surgery. I was scared to death of chemo and thought I might rather die quickly than go through chemo, but since the surgery sounded not too difficult, I decided I might as well do it. That was how I handled the whole thing -- one step at a time. I had a wonderful gyn/onc and cancer team, and it sounds like you will, too. It is such an advantage to have access to a major center. 

As it happened, it was all so much easier and better than I thought it would be. My surgery was robotic, and I had a very quick recovery, which many women do. I was eating lunch at my favorite restaurant two days after surgery and I only needed an alternating combination of Tylenol and Advil for pain for the first two days, then nothing. I decided to do the chemo and had a common regimen of carboplatin and taxol -- 6 cycles three weeks apart, starting three weeks after surgery. The chemo did not make me sick or nauseated, although my care team prescribed medication before the first cycle just in case. I was easily able to work full time throughout chemo, and it was over so much sooner than I thought it would be. 

My care team held my hand throughout, and no metter what options you choose, you are likely to get that same support at your cancer center. They urged me to let them know about anything and everything I experienced because they said they could help me manage everything, from the surgery to chemo to radiation. Although everyone experiences things differently a major center will have dealt with pretty much every possible reaction. One thing you may want to do right away is to tell your doctor that you are frightened and anxious and angry and ask them for an anti-anxiety medicine like lorazepam or another benzodiazapam that acts right away. I had never taken an anti-anxiety med and didn't really want to when my nurse practitioner said that many women found it helpful. I am so glad I listened to her. I took it from the I was diagnosed until after my first chemo, and it was so helpful. Once I had the first chemo, I knew I could manage the rest.

You may not need chemo or radiation at all. Many women with endometrial cancer do not. If the idea of chemo is one of the things that is frightening you, I hope it helps to know that there are many women on this site who will be able to help you through it, both with moral support but also lots of concrete tips about how to get through it.

I know there are many different strategies for dealing with the waiting. Mine was to stay away from the web. Usually I am an avid researcher and want to know everything possible. In this instance, I decided to trust my Hopkins-trained gyn/onc, who I liked and was comfortable with immediately, rather than research things myself. 

Fingers crossed that you get good news soon.

Molly

I had the spotting long before I had the D&C and results. You might have caught this on time.

12/2018 Spotting (full month; I didn't know what it was and I was terrified to even find out).

1/2019: Ultrasound. Thickened endometrium 10mm, somewhat heterogeneous

2/2019: Biopsy at gynecologist. Not enough tissue (was told this 3 weeks later)

3/2019: Pre-admission tests for D&C (3/21/19). Got results on 3/27/19: endometrioid adenocarcinoma FICO type 3

15 weeks gone now from first symptom to results. The type of cancer cells is something they can tell you from the D&C. And I remember getting the thickness of endometrium from the ultrasound results. 

3/29/19 Pre-surgery scans. Tiny nodules in lungs and a 3mm lesion in liver. Abdominal and pelvic scans clear.

4/15/19 Total hysterectomy. Quick recovery.

5/1/19 Endometrioid denocarcima, stage 1A, type 3. Genetic testing done for Lynch syndrome, one of the breast cancer genes comes as a variant of unknown significance. Got 3 brachytherapy treatments because of the type 3.

8/27/20 Diagnosed with left breast cancer, stage IIB, overlapping cancers and a lymph node diseased. Got sent straight to chemo. Since then I've had a mastectomy and I'm recovering from it and going through reconstruction soon. This time, I didn't know much and didn't research much. Just went through the motions. I just prayed I didn't have to have radiation and my prayers were answered. Lung nodules have not changed, liver nodule grew to 6mm and I had an MRI this time. They're still saying that it can be a cyst.

This place was great to keep me calm.

Me too,at 57,diagnosed through TVS,and D&C,now surgery done,stage is Pt2b,my radiotherapists differ in their approaches,my wounds after TAH BSO hysterectomy haven't healed completely. Wanted to know where to ask for better advice.

And feeling in solidarity with you,hope you are better now.

At what stage of treatment and recovery you are ?

MoeKay said:

Diagnosis to Surgery Timeline

Hi woodstock, welcome, though I'm sorry for your recent diagnosis and the very stressful year you've had.  As they say, sometimes when it rains, it pours. 

I remember taking a tape recorder to my initial consultation with my gynecologic oncologist.  That was back in 1999, before smartphones.  I found recording the visit helpful, because it was hard for both my husband and me to remember everything after the fact. 

I knew saving my calendars for more than 20 years would eventually come in handy!  Here's my timeline from diagnosis to completion of surgical pathology report:

Diagnosis (by gynecologist):        April 26

Consult with first gyn-onc:           May 4

Consult with second gyn-onc:     May 5 

Surgery by first gyn-onc:             May 12

Completion of path report:         May 17

I didn't have a CT scan before surgery, but keep in mind that was 22 years ago.  I'm not sure if that was just my doctor's preference, or if scans are more routinely done now before surgery.

Don't hesitate to ask any additional questions you might have.  Wishing you the best!

 

 

I bled in February,7 years after menopause at 50,had TVS,had CT CAP,had MRI,and underwent TAH BSO,I hope everyone understand the terms. Currently waiting for wound healing 2 and a half months after surgery,and differing radiotherapists to decide whether I need just bag.brachytherapy or external beam radiation too.

I come from Pakistan,have a humble socio economic background,couldn't afford private healthcare,and was a victim of delay and negligence in public sector.

My current post op stage(2 plus months back) was stage 2.

Don't know whether it has spread or not.

Will learn from all of you.

Regards

Lusafag said:

What next after Surgery.

Me too,at 57,diagnosed through TVS,and D&C,now surgery done,stage is Pt2b,my radiotherapists differ in their approaches,my wounds after TAH BSO hysterectomy haven't healed completely. Wanted to know where to ask for better advice.

And feeling in solidarity with you,hope you are better now.

At what stage of treatment and recovery you are ?

Lusafag,

Medical practices do differ amongst different countries. In the United States, the NCCN (National Comprehensive Cancer Network) recommends External Beam Radiation Therapy (EBRT) for Stage 2 uterine cancer. Vaginal brachytherapy is also an option for grade 1 or 2 cancers, with less than 50% myometrial invasion, and no lymphovascular space invasion (LVSI) and microscopic cervical invasion. In some cases, a patient may receive both types of radiation.

The NCCN also recommends systematic therapy (e.g., chemotherapy) for Stage 2B patients.

Have your doctors discussed adding chemotherapy to your treatment plan in addition to the radiation?

I know that Pakistan is experiencing a high rate of COVID infections right now. That may be one reason why your radiation treatment has been delayed. Cancer treatments for some patients here in the United States were also delayed at various times over the past year.

I hope that you can start receiving the recommended treatment just as soon as you are recovered from surgery and it's safe to do so at your treatment center.