Log in or Register to participate in these discussions

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)

Re: Hello! New and worried.

Posted by Dawnkey on Mar 22, 2019 11:49 pm

Hi everyone! I thought I would post an update. I went for the CT of my lungs and the CT guided biopsy on March 7th. I was told it would take up to ten business days for results (that was yesterday). I was feeling really anxious today and emailed my oncologist’s office this morning. I still hadn’t heard back by 2pm, so I tried calling and the message on the machine said they were closed until April 2nd and I panicked. I tried calling the Cancer Centre but since I don’t have a cancer care number, they couldn’t do much. But, I think they contacted my doctor’s office because I got an email back, finally. The results still aren’t ready, the samples had to be sent offsite for additional testing. The admin also told me that my oncologist added my case to his team discussion on April 10th. I have to wait until mid April for an answer and hopefully a plan. I’m so frustrated and broke down today. I haven’t cried much because I felt like I shouldn’t cry about the unknown but I sure did today. I’m also getting really sick of people telling me to stay positive... I had to tell one of my very best friends to stop and let me have feelings, today. 

Re: Hello! New and worried.

Posted by Brighty on Mar 23, 2019 12:02 am

Dawnkey‍  welcome!! Waiting  is extremely  stressful and nerve-wracking.     You are allowed  to feel whatever  you need to feel.     I was wondering  if you had a councellor  you can talk to.    Someone who is neutral  that you can share with .   People will say things because they care.. but don't always  know the right  thing to say .      What I would recommend  in the meantime while you wait is to distract  yourself  any way you can.     What kind of things do you like to do?   Do you have a hobby or favorite  TV show or book ?   Do you like movies?   What ever you feel will work for you, immerse yourself in it .. even if it's only for a few minutes  per day.     Do you like to exercise?  The weather is getting better. . Maybe a walk in nature?        You may also be into journaling.     People  swear by it.    Write down your fears and frustrations.      Please keep us posted as to what you find out !!!

Re: Hello! New and worried.

Posted by Dawnkey on Mar 23, 2019 9:38 pm

Hi Brighty‍!! 
I haven’t looked for any supports yet because I feel like an imposter without a diagnosis yet. My work has a employee family assistance program that I keep putting off calling for that reason. I keep telling myself that I should just frigging do it already. I am reaching out to friends and letting them reach out to me though. I’m also planning a last minute trip to NS to see my family. I work for an airline so it’s usually pretty easy to plan a last minute trip. If I have to be on short term, it’s harder because the disability team has to approve any travel. 

Anyway.. I am starting to reach out but it’s hard to ask for help. Lol. 

Re: Hello! New and worried.

Posted by Brighty on Mar 24, 2019 5:35 pm

Dawnkey‍  Hi there again!   Good to hear back from you!  You are not an imposter by any means.   We can all use support at some time or another so never feel bad to ask for some!      The key, I think, is to set up the support system BEFORE things get out of control.    I wish I had done that too before things went haywire in my life.        Not that they will for you, but it's always best to be prepared in advance.       I'm glad you are reaching out to friends and reaching out here, those are 2 good moves in the right direction!!!!!!!!!!!   I'm also glad you are going to visit your family.        I found it hard to ask for help too, but I found once help came into my life, things were so much easier and it was a huge relief.     

Re: Hello! New and worried.

Posted by Dawnkey on Apr 10, 2019 2:28 pm

ashconBrightyAly‍ 

Hi there!
I got my official call yesterday. My oncologist said that I have a low-grade retroperitoneal liposarcoma. They are talking about 5 weeks of daily radiation, a 4-8 week rest period then surgery. I'm feeling really far out of my element. 
I have an appointment on Monday to discuss my diagnosis and treatment plans.

I always wanted to win the lottery, but not this one! 

Re: Hello! New and worried.

Posted by Brighty on Apr 10, 2019 3:37 pm

Dawnkey‍  I'm so sorry.   Thank you updating us.   now you have a plan in place and an appointment  on monday.. so you will know exactly  what you're dealing with .   Like  Runner Girl‍  said you are in  good hands.    Please post on monday  to let us know how your appointment  goes.    I wish you the best of luck with treatments and post here whenever  you want and need to.    We are behind you every step of the way!!! 

Re: Hello! New and worried.

Posted by ashcon on Apr 10, 2019 7:46 pm

Hi Dawnkey‍ 
​​​​​​
Good to hear from you! 
The almost 2 months of waiting and testing  is finally over! So glad to hear that they've finally figured it out  and have a plan for you. 

With this hurdle crossed, how are you doing?  In your heart and your head? 

When you see the doc on Monday ask for a copy of the report from the team discussion on Apr 10, along with any other reports and test results. 

As Brighty‍ says please let us know how Monday goes.  Your story and experience will help others who may be reading your posts! 

Re: Hello! New and worried.

Posted by Dawnkey on Apr 18, 2019 10:47 am

Hi Alyashcon‍ and Brighty‍!! 

So, my appointment went ok. I have stage II well-differentiated retroperitoneal liposarcoma. The plan is 5 weeks of daily radiation to sterilize the area in an effort to obtain clear margins, a 4-8 week rest period and then surgery which will be an open abdominal surgery. They will have to remove the mass, plus potentially resect some veins and arteries and possibly remove my right kidney. There is a ureter that goes right by the tumour and if they have to cut a section of it, it may not be resectable so they would remove the kidney. 

I am seeking a second opinion at Mount Sinai/Princess Margaret because they are a much higher volume sarcoma centre. Tom Baker Cancer Centre in Calgary only sees an average of 3-5 cases like mine in a year. I still want to keep my current doctors, I just want reassurance that this is the right path for me as pre-op radiation isn't always prescribed. 

I have my pre-radiation appointment this afternoon. 

Re: Hello! New and worried.

Posted by Brighty on Apr 18, 2019 11:31 am

Dawnkey‍  thanks so much so updating us! I'm so glad that you have a plan of action in place and also glad you are seeking a second opinion.     Please continue  to update us on how  things are going!!! We're always here for you!!!!!

Re: Hello! New and worried.

Posted by Lacey_adminCCS on Apr 18, 2019 11:32 am

Dawnkey‍ 

Thanks for the update. Can you share how you set up the second opinion?

Re: Hello! New and worried.

Posted by Dawnkey on Apr 18, 2019 11:47 am

Hi Lacey_adminCCS‍!

I just printed off the physician's guide off the Mt.Sinai/Princess Margaret site for my family doctor. I asked my surgical oncologist if there was anyone he would recommend at the Toronto hospitals and he gave me two names. He said I could try to contact them myself but that it typically moves faster if my family physician sends in the referral. Luckily, it won't cost anything extra other than me potentially have to fly to Toronto for an in-office visit. So, I'm seeing my family doc this afternoon... hopefully get the ball rolling before the long weekend. I really just want a file review... someone to look at the plan and say - yup, this looks good or no, maybe consider trying this instead. I will let you know how it goes! :) 

Re: Hello! New and worried.

Posted by CharlotteS on Apr 19, 2019 2:18 pm

Hello Dawnkey‍   My heart goes out to you on this journey that none of us ever thought we would be on
I agree with everything that has been posted.  Reading what is on this site has helped me relax. I have gathered strength and courage from each an every one here.
Your support system is essential.  Maybe my goofy ideas will help.
I have a group of ladies in my neighborhood who, upon hearing that my wonderful silly man, was diagnosed with renal carcinoma last August, showed up and dragged me out of the house for a short walk.  Then a longer walk a few days later.  I have incorporated the walks around the neighborhood with my husband as a way for him to stop and chat to neighbors, get in some fresh air and have that much needed social contact.  I have always had "Cocktails on Deck" with the gals and the boys have always had the "Wieners and Beers" around the fire pit.  So I made up a Virgin Cocktail Hour for us gals and the boys have joined in.  In snow and the rain we are out in our yard once a week for Virgin Hour.  It is hilarious and so therapeutic to just sit back with friends and laugh for a few minutes.
We have had the old Two Step since his diagnosis.  One step forward and two steps back.  Then all a sudden we are two steps forward and only one step back. Waiting for results was the worst.  Doctors are very busy people. They are not exclusive to just our needs.  I know that sounds harsh but please checkout in Alberta if you have access to your records.  In BC it is called "My Health Portal".  This gives me access to all the reports from (for example) the radiologist. I see what the Oncologist sees.  This gives me time to research what was said and to formulate some intelligent questions.  We also have eHealth.  This is just your Lab Reports.  Again, I see what the Oncologist sees.  I am sometimes relieved to know that my husband's blood count has gone back up to normal.  I can breath until we see the Doctor next week.
Just some thoughts for you.  I hope they help.  And do cuddle up those babies of yours.  I am sending you a warm blanket hug.

Re: Hello! New and worried.

Posted by Lacey_adminCCS on Apr 23, 2019 11:46 am

Dawnkey‍ - Thank you for sharing your knowledge with us!