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Update on my Mom 4 Months After Completion of Frontline Treatment

rcdeman
Posts: 256
Joined: Aug 2016

Hi guys,

Wanted to give you an update on my mom's current situation. So it's been four months since she completed all her frontline treatment. She finally got her CT scans back today and the lab results are:

IMPRESSION:
1. Interval development of a small amount of ascites fluid in the posterior inferior pelvis since the prior June 2017 examination.
2. No suspicious pulmonary, hepatic, splenic nor pelvis mass is identified.
3. No significant adenopathy is demonstrated in the chest, abdomen nor pelvis.
4. The patient is status post previous hysterectomy and bilateral oopherectomy.

The most concerning issue is #1, and the med onc. said we're going to have to keep an eye on the ascites and see if it gets larger in volume. So far, it is too small for paracentesis. He is scheduling an ultrasound on the area mid-January after New Years and my mom will be getting a second CT scan to see if the ascites has increased sometime in mid-March. I noticed my mom's diagnosis seems similar to Cheese's situation in July-September of this year. Please pray for my mom and let's hope it's not anything serious and that her ascites is not cancerous (or doesn't increase in the upcoming scans!).

Overall, the scan wasn't great but not as bad as it could be. I know we are still blessed (thank God!), but still, very nervewracking since we aren't able to immediately diagnose the ascites...

Thanks for all your support! I wish everyone a Merry Christmas and a Happy New Year!

Love,
Rebecca

evolo58
Posts: 290
Joined: Dec 2017

I hope the ascites isn't cancerous, either. Another three-month respite from all of this, though, is probably welcome after all she's been through. Hope the results are great in March and she gets another three months of NED ... and another ... and another ... and etc. :)

 

CheeseQueen57's picture
CheeseQueen57
Posts: 767
Joined: Feb 2016

Ascites can be caused by many things other than cancer. Keep that hope alive. And even if it is cancer, there are options. But I will pray that it is caused from a little inflammation from something else. Try to enjoy the holidays with the thought that it is something else. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1460
Joined: Jun 2015

Rebecca, Thanks for the update. I agree with the other ladies.... use this time to celebrate the good news and enjoy time together. One thing for sure is this is a journey. We never know where it will take us but we learn to love the time we have. Your Mom is so lucky to have you in her life. I hope you all enjoy some down time and have a Merry Christmas!

Love and Hugs,

Cindi

rcdeman
Posts: 256
Joined: Aug 2016

Hi all,

I thought some of you would appreciate a short follow-up update on my mom's condition. So we went back for a U/S in late-January/early-February, and the ultrasound scan showed no ascites fluid that was seen previously in the December 2017 CT.

Praise God! We are very encouraged by this scan and was told that this fluid was most likely physiological and reabsorbed back into the organs/tissues.

We will be going back to get another more comprehensive CT scan sometime in March 2018. Praying everything is clear! My mom is doing pretty well right now although she is still suffering from the side effects of prolonged radiation therapy. Her oncologist told her that she would most likely suffer these side effects for the rest of her life, but of course this is much more preferable to cancer. Thank God for His mercy! :)

I also want to encourage those who are discouraged about their prognosis that there is hope. You can go into my profile and read all about my mom's cancer log and her prolonged treatments and multiple surgical procedures. Her diagnosis was UPSC Stage IIIC2, Grade 3, and she had to undergo surgery twice. Afterwards during chemo, she had many issues with the nurses who administered her chemo IV lines and even suffered from chemo extravasation in her arm. Her chemo dosage plan was also changed midway and her radiation sessions, both external and internal, dragged on for 4 months. Her total treatment duration time from her first chemo to her last chemo session took approximately 10 months.

So my point is: Even though almost everything that could go wrong went wrong during her treatment, my mom survived and is now doing quite well considering.

I also want to thank all you ladies who have been with us during this time. Your words and comments were greatly appreciated and gave us much encouragement and support. I will certainly update you all again in the coming months.

Cheers,
Rebecca

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Thank you Rebecca for the encouraging news about your mother, and for encouraging all of us regarding the possibility of good

outcomes regardless of long and difficult treatments.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2510
Joined: Mar 2013

Rebecca, thank you for letting us know how your mother is doing.  Continued prayers for her.  

Northwoodsgirl
Posts: 492
Joined: Oct 2009

So glad to hear the ascites has cleared in your Mom’s abdomen. Sounds like she is doing much better. Keep us posted!  Your message of hope is needed by all of us no matter where we are in our “journey“. Thanks for the update! 

MAbound
Posts: 755
Joined: Jun 2016

It's so good to hear that it's all been worth it for your mom. You are the best daughter!Innocent

rcdeman
Posts: 256
Joined: Aug 2016

Just wanted to give you all a quick update on my mom. Starting 05/18/18, my mom started having ongoing abdominal and pelvic pain in both her lower right and left sides, as well as higher up below her ribs on each side. Sometimes it's better, sometimes it's worse. We are not sure what this is, but this type of pain hasn't happened to her until just recently. We went to see her surgical oncologist yesterday for her 3-month follow-up but in the end only saw his PA since he was too busy. My mom also has a small amount of spotting. The PA suggested that we get her blood test CA-125 early, so we'll be doing that next week. She won't be getting a CT scan this time around since she just got one 3 months ago and the doctors are hesitant to issue too many CTs too soon due to the radiation levels.

I'm praying that this isn't a recurrence and want to ask some of the ladies who did have recurrence: what were some of the symptoms you had prior to recurrence?

LisaPizza's picture
LisaPizza
Posts: 181
Joined: Feb 2018

It sure seems like she needs to be evaluated, even if there was a CT 3 months ago. Things can change in that amount of time. If it's caused by cancer, they need to know.  If it's not cancer, it still needs to be diagnosed and treated ... she's in pain! It could be secondary to the radiation too. Maybe her radiation oncologist will be more helpful in getting her taken  care of.

rcdeman
Posts: 256
Joined: Aug 2016

Thanks for your suggestion. I think right now we're just going to go ahead with getting her CA-125 results before we decide whether a CT is necessary. The thing is, her CA-125 numbers have never been a very good indicator... We have an appointment with her medical oncologist soon so we'll ask for his opinion as well.

pinky104
Posts: 574
Joined: Feb 2013

I had my first cancer surgery in 2010 followed by an incisional hernia repair in 2012.  Prior to my recurrence, I had right lower abdominal pain that felt like my hernia was back.  It turned out it was, even though a couple of my doctors couldn't feel it.  My intestines had grown into the mesh from my hernia repair, complicating matters further.  And I had cancer wrapped around the ascending colon, in the paracolic gutter and the peritoneum, plus into the muscle, pressing onto a nerve.  I had numbness in my right thigh. 

I had no bleeding vaginally, but blood was found in a hemoccult test.  One of three smears I did from my stool showed blood, which led to a colonoscopy and my 2nd cancer diagnosis.  I had narrower stools than normal, but I didn't realize this until I read something about it later.  The cancer was narrowing my ascending colon, as it was wrapped around it.  I had surgery again last year, seven years after my original surgery.

I'd say that other than the pain, my biggest symptom was a horrible craving for carbs.  First, it was oranges, then homemade bread and sweets like chocolate syrup.  I had hot flashes at night both times I had cancer. I never had hot flashes when I hit menopause.  I now know that if I get hot flashes again, I should get checked out extra thorougly.  Before, my doctors were telling me that my increasing CA-125 levels were in the normal range and not to worry about them.  They had first been running in the 7's and then the 6's, but went up first to 9 something and then 14 something.  Two  months later, after my surgery, I was at 129.3.  I discussed this with my GYN/onc. and he told me that if they hit 20, it would mean something to worry about, as my CA-125's are very accurate.  I get checked out every 3 months now, which I'm sure will decrease with time like it did the last time.  That's probably when it will come back.  It's sneaky.

I hope your mom doesn't have a recurrence, but if she does, at least it's being found and will be treated before it gets too much worse.  I hope her CA-125's are accurate for her.  If not, skipping the CT scans can miss something. I've had too many CT's and PET scans myself, but most of them found something, so I don't regret having had too many.

 

 

 

 

rcdeman
Posts: 256
Joined: Aug 2016

Thanks pinky. The problem is she never even got her CA-125 checked prior to hysterectomy, and so we have no basis or standard to judge from. My mom's CA-125 numbers have always been relatively consistent, always in the teens. My mom's gotten quite a lot of CT/PET scans during her treatment so apparently everyone's reluctant to issue her one. We'll be seeing her medical oncologist soon for a follow-up so we'll ask him then. For now, we'll be getting blood tests to check for her CA-125. The PA said if the numbers double, it may then be an issue and they will have to order a CT afterwards.

SF73
Posts: 243
Joined: Oct 2017

I wonder if MRI could be a good substitute. I have always wondered why oncologists dont utilize that tool as much as others. No radiation, no harm. It sounds as if it would be as informative as a CT Scan. Does anyone know what is it that MRI cannot show and CT scan can?

rcdeman
Posts: 256
Joined: Aug 2016

Although I don't how MRI compares to CT/PET, but from what I understands, doctors are hesitant to use MRI due to the cost. Insurance companies might be hard to convince to approve it.

Northwoodsgirl
Posts: 492
Joined: Oct 2009

Your Mom needs more than a blood test in my opinion. The doctor can do another CT because of her new pain. Keep advocating for her! 

rcdeman
Posts: 256
Joined: Aug 2016

Thanks Northwoodsgirl, I will definitely continue advocating for her. It seems most of these doctors don't really do enough, and the ones we see don't seem to be open to new techniques and care. I'll ask for an U/S first as it seems more reasonable. If her CA-125 comes back abnormal, I will try to advocate for another CT.

takingcontrol58
Posts: 233
Joined: Jan 2016

Besides the CA125 test, I would also test for HE4. It is believed to be a better marker for cancer recurrence
than CA 125.

Also, would suggest a pelvic and abdominal ultrasound. No radiation. Since your mom has some spotting<
I would also suggest a transvaginal ultrasound. If the ultrasounds show something
and the cancer markers have risen quite a bit, then I would go for the CT scan. I too would avoid
any radiation unless necessary.  I still get alll these ultrasounds every 3 months and it is almost 4 years.

Takingcontrol58

rcdeman
Posts: 256
Joined: Aug 2016

Hi Takingcontrol,

You must have a very open doctor and very good health insurance. I've asked each of my mother's doctors for the HE-4 test multple times, but none of them have been willing to do so. They say their labs don't include for HE-4 tests so it seems it's like a rarer more expensive test.

That being said, I will try to talk to her med onc and ask him for a TV U/S per your suggestion. It's a good idea and I'm also weary of too much radiation exposure as well.

Thanks!
Rebecca

SF73
Posts: 243
Joined: Oct 2017

You are right, rcdeman. That's my experience also. It seems no one in San Francisco has even heard of HE4. They simply say that's not a test we order. 

Takecontrol, ultrasound is a brilliant idea! That should be a perfect first diagnostic test. Since it is not expensive I cannot imagine them saying no. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2510
Joined: Mar 2013

I remember asking my doctor about the HE4 test, just being inquisitive, and she didn't find it much different than the CA125.  I did go to read somethings about the HE4 and it seems as though it is thought to be more for ovarian tests, so in the end, I read as they are both similar in the end.  My doctor is pretty open about things as well as we have talked about everything over the years - some of which have been things brought up on this board.  

SF73
Posts: 243
Joined: Oct 2017

Actually there are many studies that show HE4 is a meaningful/useful marker for endometrial cancer. Most studies suggest using CA125 and HE4 together in surveilance of the endometrial cancer patients. There are some (I included an example below) that suggest HE4 alone is a superior marker. So I think it is relevant and useful. But somehow in San Francisco it is not being used which is very disappointing since we can use all the data we can get. It seems TakingControl's doctor is more up to date with the research than others. 

http://journals.sagepub.com/doi/full/10.1177/1010428318757103

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