Uterine Ablation led to Cancer - CANNOT GET TREATMENT

Jennifer Swick

Hi - I am a 38 year old woman with a clean bill of health my entire life up until July 2016.  I had a uterine ablation as per my doctor's suggestion to accompany a tubal (there was no medical reason for an ablation to be performed, he said it would help lighten period).  I agreed without batting an eye as he's been my trust ob/gyn for as long as I can remember.  This was the first and only time I didn't do research on what a doctor said to me during any visit, even anything discussed during a routine visit I would look over and confirm.  18 months prior to July I had the ablation and tubal performed and felt fine.  I didn't have a period for a number of months.  I started spotting and feeling "off" on July 9th, I expressed concert to a close friend that I had cancer (still not knowing it was a risk associated with an ablation).  I also said the same thing to another friend July 11th.  Everyone else, including all doctors, thought I was insane for having this gut feeling.  I was tested for everything under the sun EXCEPT for cancer due to being symptomatic of something (I knew it was cancer) and my labs were always abnormal but never anything alarming.  I went to at least 6 other specialists for anything but cancer for further testing.  My health over the past 10 months as gotten increasingly worse and I was beggin for help and cancer screening.  Finally, about 5 weeks ago, April 2017, I developed a large mass in my neck and my doctor looked at me in terror and stunned disbelief because I had been saying this all along for almost a year and now I had a mass.

I am seeing an oncologist who was focusing on my neck and head.  I told her we were looking in the wrong spot and convinced her it was in the repro organs.  I was scanned with contrast and a clear kidney bean shaped carcinoma was present during that scan.  I was scanned again and it was deemed inconclusive, next it was not visible at all.  They couldn't come up with a clear diagnosis based on inconsitent findings.  My lab work is getting increasingly more abnormal.  My thryoid is working 10 times as hard as it should be and at one point I had a positive cancer marker finding.  The next labs were negative but the thyroid was still getting worse.  At this point a few weeks ago my body wide pain scale was a 10 and I had a low grade fever and trouble walking. 

I NEED HELP.  We know we have seen a tumor, we have had positive imaging and lab work for cancer.  I am now at the point where I can't eat solid foods due to lymph node enlargement and sores in my mouth and throad.  I CANNOT FIND A DOCTOR TO TREAT ME.  I can literally feel myself dying and it is rapidly escalating by the day.  To those who have had uterine cancer due to an ablation or otherwise, since it is very common for testing to be unfounded or to show positive results mininally and inconclusive the rest of the time, how did you get treatment?  I'm sitting here facing a certain death and I am keenly aware of it.  Noone will touch me or remove the uterus due to the different images we have collected.  I need help and I need it now.  My time is running out.  I can no longer walk, I can't breathe from the thyroid robbing me of oxygen because it's working overtime to process the hormones and the other night I almost bled out while sitting on the toilet.  I'm also leaking or pouring out a watery or mucusy like fluid all day.  I am in so much pain I cannot take it.  My fever is 101 or 102 everyday and I have sores all over me.  I am SICK. 

Can someone please help me and advise on how treatment was acquired if you had abnormal testing for uterine cancer.  It is one of the hardest to detect making early intervention  nearly impossible.  I'm absolultey at a more advanced stage at this point which another doctor even confirmed based on symptoms and increasingly unfavorable lab results. 

PLEASE PLEASE PLEASE - how do I find a doctor who will treat me??  I'm wasting my life away on a daily basis with tests when I should have had a full hysterectomy and follow up treatment plan at this point.  I am dying under doctors' care and they are not moving; only insist on further tests.

How do I get care and get it immediately?  I live in the tri state area and am willing to fly anyhwere in the nation if a doctor will take my case. 

I am the only surviving parent to a 9 year old boy whose father we lost in 2012.  I cannot become disabled and die when we know I have this and we know the cause and appropriate treatment and leave my son with no parents.  I need someone to determine where this has spread to and stage it and start helping me immediately.  This entire cancer was preventable and caused by that ablation.  I need support and guidance now, please.

I am desperate.  Please help.

Thank you - Jennifer

 

TeddyandBears_Mom

Wow Jennifer.... so sorry you

Wow Jennifer.... so sorry you are going through all of this!  I know you said you saw an oncologist. But, have you gone to a GYN Oncologist? I'm thinking a major cancer center would be your best option for help. Have you tried that yet?

Hopefully others have ideas to offer you and will come along shortly.

Please come back and let us know how you are doing.

Love and Hugs,

Cindi

Kvdyson

Jennifer, I am so very sorry

Jennifer, I am so very sorry about all you have gone through! I agree with Cindi that a major cancer center is your best bet. Google "major cancer center near me" and start calling them asap. Please try to stay hopeful. Good luck and keep us posted on how you are doing.

survivingsu

Yes, do look into a major cancer center asap

I agree with Cindi and Kvdyson's advice - a major cancer center can do a lot.  I know first-hand how helpful and life-saving the Seattle Cancer Care Alliance was for me now almost 8 years ago.  There are a lot of different kinds of scans that show different things (CT, PetScans, Ultrasound, etc.), and a major cancer center would be up on the latest technologies and research findings.  A major center would also be familiar with all different kinds of cancers and as in my case, they were the best bet for my rare & aggressive small-cell undifferentiated uterine cancer.

Hang in there, there are people out there who can help you!

Wishing you the absolute best,

Susan

laura25

Hi Jennifer,

Hi Jennifer,

I'm so very sorry you are going through this.  I had an ablation done when I was 44 years old.  I had it because of heavy bleeding from fibroids.  Within a year, I started bleeding again and also didn't feel right.  I asked my Doctor if it could be cancer and he said no, that he did a punture test on my uterine wall that was negative.. I found out later that he should have done a D & C, which would have taken the entire lining... not just a small part.  

He said I should have a partial hysterectomy because the Abalation didn't work.  I didn't like how he dismissed my concerns so I went to another Doctor.  That doctor couldn't test me for cancer since I had the abalation.   He did the procedure laparoscopically and the labs results came back that one of the fibroids was not a fibroid, it was cancer.   Of course if he had know the entire procedure was have been done completely differently.  If cancer is suspected, the Doctor takes out the organ as a whole.  The uterus, cervix and ovaries.   You do not want to "chop" it up as what is done in laparoscopically.

I stayed with the Doctor who did the surgery as I felt he was my biggest advocate and was as devasted as I was that it was cancer.  He went back in and took out my ovaries and found it had spread to a pelvic lymph node.  The lymph was quite large so he feels the cancer had spread there some time ago.  There was also a piece of tissue from my inital surgery that had adhered to my lower bowel.  

Before your abalation,  did you have a D & C performed?   And if you are bleeding again and have concerns that there is cancer, I would suggest seeing a GYN/Ongologist.  They how best to remove the uterus and know what to look for.  Unfortuntely once an abalation is done you can no longer test the uterine tissue for cancer.  

And just so you know, I am 6 years out, I am now 51.  I had aggressive surgery and 8 rounds of chemo.  I'm back to life again.  Food shopping, working and enjoying my family.   I say I'm stage 3C, but since they found a piece of cancer from the previous surgery on my bowel, technically I'm stage 4.   

I hope this helps.  xoxo

-Laura