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Hello! New and worried.

Hello! New and worried.

Posted by Dawnkey on Feb 14, 2019 4:19 pm

Hi everyone! I was told on Monday that I probably have retroperitoneal liposarcoma and that I was being referred to a surgical oncologist. My first appointment with him will be on Feb 26th. I’m scared and reading online isn’t helping me feel any better. I’m a 43 year old wife and mom of two girls.. 6 years old and 19 months old. What did you find helped with the waiting? Thanks in advance! 

Re: Hello! New and worried.

Posted by Aly on Feb 14, 2019 9:22 pm

Hi Dawnkey‍ , welcome to CancerConnection. The waiting game is the hardest part, and it doesn't help if you start googling stuff online.

I am going to tag a few people to chime in here, ShawnW‍, who was also diagnosed with retroperitoneal liposarcoma. As well as ashcon‍ and WesT‍ that might be able to give you some better suggestions on what helped with the waiting.

I wish you the best and if you want to chat, I am always here.

Re: Hello! New and worried.

Posted by ashcon on Feb 15, 2019 11:04 am

Hi Dawnkey‍ 

As Aly‍ (and many others say) the waiting is the hardest part.  I understand that until you meet with your doctor(s) you're desperate for information, and going online is something we all do, or have done while waiting.
This is OK, but please use what you find as a way to formulate questions you want to ask your doctor(s) - not self-diagnose!

In the meantime, the best way to get through this waiting is to distract yourself. It sounds corny, maybe even lame, but here's why it works:

1. Distractions like hobbies, physical activity, music, playing with your children, going for a walk will relax you and will release endorphins that will help you be stronger and more focused & feeling able to deal with the whirlwind of activity that is about to be a part of your life.
These things also remind you that YOU are in control of your actions, words, thoughts - and cancer is not.  This is really important.
I recall a period of 2 months where I learned that my cancer had spread to my lymph nodes while I was on chemo!  My case went before the tumour board and it was about 3 weeks before I learned what the game plan was going to be to address it. In those those 3 weeks, I went to the gym, went for walks - anything that would allow me to do feel GOOD about what I was doing for my body. 

2. We live in a country that has an excellent health care system.  Yes, it may seem like forever until the doctors back to you, or until they start "doing" something with this "thing" that's inside of you, but trust that you are on their radar, and they are doing things right now (unbeknownst to you) to get the stage set for your diagnosis and treatment.

3. Anxiety and stress associated with this waiting is not good for you, your health, or the reserves you will need to fight this. Some say that stress and anxiety may even be a cause of cancer. Not sure if that's true, but we know it's definitely not good for you, overall.

Believe it or not, things will settle down.  This is not being in denial - despite what some family or friends may think when you engage in activities that distract you.  You know that this cancer thing is on your mind 24/7.  
Give yourself permission to take a break from these all-consuming thoughts every once in awhile.
I used to tell my cancer, "don't worry, I haven't forgotten about you.  But today I'm going to do "xx".  I'll get back to you tomorrow/ next day/ next week."

As a mother myself, I understand the fears and anxiety you must be feeling.  Sometimes the worst part of cancer is not so much the fear for ourselves, but for our children and loved ones.
You may find some valuable tips in the discussions in Cancer and the Family

How was this suspected retroperitoneal liposarcoma discovered?  Were you symptomatic?

Re: Hello! New and worried.

Posted by Dawnkey on Feb 15, 2019 11:36 am

Thank you Aly‍ and ashcon‍ for your responses!! 
I had gastrointestinal issues for a long time (years) and finally talked to my doctor about it in the summer of 2018. I asked to be referred to the GI clinic in Calgary. It took a few months to get in, but I went for a bowel ultrasound on Oct 29, 2018. They found two masses - one in my rectum and one in my pelvis. Within the next ten days, I had a colonoscopy (Nov 7), an ultrasound with contrast (Nov 7), an MRI and a CT scan (both Nov 9). I was having a lot of pain about a week after my colonoscopy and hadn't had a bowel movement so I called my surgeon's office. They asked me to come to the ER at Foothills Hospital and tell them I was a direct admit for the surgeon. I went in and was admitted. The team of doctors that talked to me thought that I had colorectal cancer which had spread to my lymph nodes. All the imaging tests looked like it, although the biopsy taken during the colonoscopy was benign. The felt that maybe they didn't get the right cells so they wanted to take me into the OR to get more extensive biopsies. I was taken to the OR and the lead surgeon removed the mass, which turned out to be a very large but totally benign polyp. At my follow up appointment, he said that he thought that the second mass was inflammation and that it would shrink. He booked me for another CT scan, which I had on Jan 29. I went in for my follow up appointment on Feb 11 and the mass had grown and they told me it appeared to be a primary cancer and I was referred to oncology. I have my appointment with the oncologist on Feb 26th but I got the call yesterday that my endoscopic biopsy is booked for Feb 20th. They are going to put a rush on the biopsy results so we will have them for the 26th. I didn't have any symptoms other than a fullness in my abdomen.

I really appreciate the advice... I've been cuddling my girls more for sure. You're right, it's hard being in limbo but life will go on, right? 

Re: Hello! New and worried.

Posted by ashcon on Feb 15, 2019 12:38 pm

Hi Dawnkey‍ 

Well, it sounds like you are in good hands and you have a team of docs who are all over this.  Good for you, and them!
The fact that you didn't feel any other symptoms other than a fullness in your abdomen should be a lesson to everyone to pay attention to their body, and check into anything that doesn't feel "right".

Will be thinking of you on the 20th and on the 26th. Keep us posted.


Re: Hello! New and worried.

Posted by ashcon on Feb 26, 2019 4:13 pm

Hi Dawnkey‍ 

Just checking in with you.  How did it go today with surgical oncologist?

Re: Hello! New and worried.

Posted by Dawnkey on Feb 26, 2019 11:54 pm

Hi ashcon‍!!! Thanks for checking in. The biopsy results were inconclusive so I have to go for more tests. They ordered an urgent CT of my lungs, a CT guided biopsy and an ultrasound of my thyroid (due to an unrelated issue). 

They also talked about radiation and surgery, but not wanting to start any treatments until they have a definitive answer, which I appreciated. The differential included sarcoma, lymphoma, fibroma or he said there’s a small chance it’s uterine tissue. 

They said I should get all the tests done within a few weeks. So, more waiting. 

Re: Hello! New and worried.

Posted by ashcon on Feb 27, 2019 9:03 am

Hi Dawnkey‍ 

Will be crossing fingers for you that they figure out what it is that they are dealing with.  It sounds like they are exploring all possibilities, and I look forward to the day when your conversations here are no longer here, under "Rare or Other Cancers"!

Sending strength to you and your family. 
Keep us posted as things progress.  I have a feeling many will benefit from your tips and learnings from this experience of waiting for an official diagnosis.

ashcon (Ann)

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