How to Get Over Hurry Up and Wait

asmayrent

Hello. My odyssey with cancer started back in November when I had what I thought were UTI's. They were treated, but never cleared up. On a hunch, my doctor did blood work and sent me to the ER due to very high kidney numbers. I mentioned the bleeding to the hospitalist at the time, and he did a quick pelvic exam and encouraged me to see my gyn when I was released. So after recovering from my 5 day hospital stay, I contacted my gyns office. Of course, her availability was not until late March. I asked if anyone in the practice was available sooner, but nobody was. I went to that appointment and she did a pap smear (my first in 3 years, as I had normal one previous and was over 65). That came back abnormal. She scheduled me for a test ten days later, that almost made me jump off the table, it was so painful. She said there was a polyp and they took samples. Several days later, she called me, told me it was uterine cancer and referred me to an oncologist in her practice. I got in to see her within two weeks, and she told me that I needed to schedule a hysterectomy. (This was at the end of April). My robotic hysterectomy, oophorectomy, etc., was on May 23. It was determined from the biopsy that my tumor was over 90% imbedded into the uterine wall. That made me stage 1b and she referred me for radiation therapy. The radiation doctor said I would need three sessions at the top of the vagina to help reduce reoccurrence. However, he asked if I'd had a PET scan, which I had not. He put in orders and I had that at the end of June. Sadly, it showed that I had cancer in a lymph node in my abdomen between the aorta and the vena cava. I would need a needle biopsy. Because it was in a weird spot, he wanted me to work with a particular intervention oncologist, so I was scheduled for the needle biopsy on August 5th, as he was out of the office for three weeks. He did the biopsy, and I remember him telling me that the tumor had grown twice its size since the PET scan. He also implanted coils in the node, one of which escaped and he had to grab it through my groin so that it didn't cause a blood clot. I saw my oncologist who came in looking concerned and I asked her if I was going to make it. She said yes, but I would need to have everything thrown at it. I was one of the 1% of people who have this happen. Six rounds of chemo, radiation, and two years of immunotherapy. I asked when we could get started. One of the doctors in the practice who I'd worked with previously was available to put in my port the next Tuesday. I started chemo on August 29th, nine months after the beginning of this journey.

At this point, I am angry that it all took so long. Did the cancer spread because of all the delays, or would it have spread anyway? I did get a second opinion from a cancer center, and that didn't happen until September 18th even though they advertise as getting patients in right away. How do you deal with this? I really am striving for a positive outlook and good mental health.

NoTimeForCancer

asmayrent, I can only imagine how upsetting all of this must be. Let's see if we can unpack some of this.

Can you tell us if you are working with a gynecologic oncologist? You say 'oncologist' but the gyn onc specializes in gyn cancers. I just am curious since they take additional training.

I can hear your frustration. I am not sure if you have calmly expressed this to them or not, but you might want to consider it. (I told my radiologist how mad I was at his office and he was very supportive) Can you find out exactly what kind of cancer you are dealing with? Did they do any genetic testing on it? dMMR, pMMR, POLE, p53 - these are all markers that has had trials using different immunotherapies.

I know some of the other ladies will be along to comment as well. I know I am not communicating clearly tonight, but wanted to let you know we are out here. You are not alone.

Forherself

Welcome Asmayrent. It is a real shock to be told you have cancer. And then there is the learning curve that follows when you try and understand all this treatment, etc. I had an US in January and had to wait until May to get into a gynecologist office to have a biopsy. I waited a long time and was still very early stage after having surgery in July. No one can answer your question about waiting but cancer does not grow as fast as we think usually. There is always the exception, as those of us who have been on this board have learned. It does seem strange that they staged you before having a PET scan. They may not have ordered it if you have endometriod type cancer cells. You do have lots of hope and I know it's hard to believe at this stage. I Don't read studies that are older than 5 years because treatment has improved so much. I found going new places was a diversion for me. Walk in a new area, different Starbucks, and I don't know why it was mentally refreshing, but it was. We are here for you.

asmayrent

NoTimeforCancer, thank you for your response. First, yes, I am working with a gynecological oncologist. They are not sure if my cancer in my lymph node is uterine cancer or another type of cancer. This does not have a genetic component; they did check as I have two daughters and I asked them to. She is aware that I was very frustrated with all the waiting I had to do. When I knew I'd need chemo, she got me set up to get my port within a week, and my chemo started the week after. I'll probably discuss this more with her at my next appointment with her, which is October 16th.

Some days the anger is more difficult to manage than others. I really appreciate you reaching out. It's so hard to explain to someone what it feels like to deal with all of this to someone who doesn't understand or have some experience with this. How are you doing? Where are you with your treatment/recovery?

Thanks,

Audrey

MoeKay

Hi Audrey,

In my case, I was the one responsible for the delay in my endometrial cancer diagnosis and treatment. I had very light intermittent spotting for a number of months, but delayed seeking medical care because I thought I was entering menopause. When I did see my gynecologist, she too thought the spotting was due to menopause. She said she would do an endometrial biopsy and if all turned out well, she would start me on a low-dose hormone. Well, all was not well with the biopsy and I was diagnosed with endometrial cancer.

I ended up with a tumor invading approximately 80% of the thickness of the uterine wall, extensive LVSI, and a fairly large tumor. My tumor stage has changed over the years since my diagnosis in 1999. Under the current (2023) endometrial cancer staging, I would be stage 2B due to the extensive LVSI. At the time of my diagnosis, there were no PET scans, no chemo for my stage cancer (originally surgical stage 1C), and immunotherapy was not even on the horizon.

So I beat myself up for several years after my diagnosis for my delay in seeking medical care. Did my delay cause the tumor to invade so deeply into my uterine wall? Did my delay cause such extensive LVSI? After a few years I decided that I would never be able to answer these questions and even if I could, what good would it do? I could not go back in time, I could only move forward and turn my anxiety and frustration about my delay into something positive. Therefore, I started sharing my experience with others, so that they would seek prompt medical attention for any abnormal bleeding or spotting (as well as any other symptoms), that they experienced either before, during, or after menopause.

Wishing you all the best!

MoeKay

JDauer

https://csn.cancer.org/discussion/comment/1718283#Comment_1718283

Hi there. I'm in the beginning of this journey and I have to tell you….I had NO idea that if you bleed during menopause it could be a problem. I'm 3 years into menopause and had a super heavy period. I called the doctor because something told me this wasn't right. Well good thing because they had me in the office within the week, did an u/s, lining was thick and now I'm scheduled for a D&C/Hysteroscopy on November 11. And she is inserting an IUD. I am currently on HRT but she said the IUD will work better and also an estrogen patch. I'm nervous and scared. I am continuing to bleed with maybe a week not bleeding but let me tell you these cramps are awful. I never had cramps with my periods nor were they heavy. This is insane. Awareness is so important and I know none of my friends knew of this either. So thank you.