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Enlarged Lymph Nodes 9 years post treatment

deanna14
Posts: 743
Joined: Oct 2008

Hello all.... I haven't been here for a long time. After Linda passed it was hard to come here. I find myself here after learning last week that I have enlarged external iliac and inguinal lymph nodes. I finished treatment in June 2009 for UPSC. I having been having hip pain for about a year. Did some PT that gave me minimal improvement. So I sought another opinion and the new doc ordered an MRI... hence the enlarged nodes. Had CT scans of chest, abdomen and pelvis yesterday and go for PET scan tomorrow. Waiting for results is just as hard now as it was in 2008... I can't find any data past 5 years about UPSC. Is it possible that this is a recurrence after all this time?

 

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Dear, dear Deanna!

I have no helpful info about your enlarged lymph nodes, but I am so VERY GLAD to see your post! I remember you were planning a wedding all those years ago - let me mention ALL THOSE YEARS AGO again! I, too, still miss Linda. We had a bit of private e-mail, too, as I used to live in Pennsylvania. She fought UPSC with all she had. She left us all with the huge legacy of helping to initiate the uterine cancer board here.

Right now I am preparing for a lumpectomy the day after tomorrow. It is a NEW cancer. Ductal cancer in situ (DCIS). Once again it is grade 3 but at (hopefully) a stage 0. I have not had a recurrence of UPSC.

Here's hoping all the testing will be able to point to the reason for and a treatment for those enlarged lymph nodes and that cancer is not a reason. Be sure to let us know what you find out.

A big hug from Sally

deanna14
Posts: 743
Joined: Oct 2008

Yes! We celebrate 10 years in November! Such a crazy time in our life. 

Sorry to hear of your recent struggles! Once in a lifetime should be enough!! Prayers for your healing!

Had PET today, no news yet. Will keep you posted. 

My my mom had ductal breast cancer many years ago... she is 75 this year!

ConnieSW's picture
ConnieSW
Posts: 1336
Joined: Jun 2012

Duplicate

ConnieSW's picture
ConnieSW
Posts: 1336
Joined: Jun 2012

Deanna, you have no idea how many times I've thought about you over the years and hoped you were doing well.  When I joined this group, I read all the posts back to the beginning and you and Linda helped me so much. I hope this scare turns out to be something completely innocent. 

Kansasgal, it's good to hear from you and I'll cross my fingers that you are a stage 0. 

deanna14
Posts: 743
Joined: Oct 2008

I’m glad to know our ”diaries“ have helped others through this journey! 

Funny how you can love and miss someone whom you never met in person! Linda was a great lady who helped so many of us. Always so positive and encouraging! She sent me flower seeds from her garden, I don’t remember the name of them, but they are growing in my front yard landscape! 

I will keep you all posted on my results and thank you for your kind words and encouragement!

Soup52's picture
Soup52
Posts: 850
Joined: Jan 2016

Hello Deanna, I just read your CSN my space to see a bit of your background. I was diagnosed summer of 2015 with my surgery in October of that year. I was interested in seeing that you are the first member I have seen here who had their treatments in the same order I had with radiation treTments before having chemo. So far I have been clear since August of 2016. Your story gives me great hope. I pray you are not having a reoccurance . Please keep us posted on your results.

cmb's picture
cmb
Posts: 247
Joined: Jan 2018

I'm sorry that you've had to return to the Board with this new worry so many years after your original treatment. I haven't had a recurrence (yet), not do I have your type of cancer. But as Pinky104 just mentioned in her new post on Metformin, she did experience a UPSC recurrence last year after remaining NED for quite a few years.

As for the enlarged lymph nodes, my gynecological oncologist told me right after my surgery that some of my lymph nodes had been enlarged. So he was very careful and particular about removing the lymph nodes. However, the pathology report that came a few days later did not show cancer in any of the 17 nodes he removed. At the time I was more concerned about what the pathology report did show and the subsequent treatment plan, so I never asked why the lymph nodes might have been enlarged, if not by the cancer.

pinky104
Posts: 567
Joined: Feb 2013

I was diagnosed with a recurrence 7 years to the month from my first diagnosis.  I met someone a few years ago who had a recurrence of her endometrial cancer something like 15-20 years later.  I asked her if she'd had UPSC originally, and she wasn't absolutely sure but thought it was.  She hadn't had a hysterectomy, just a removal of the tumor from her uterus.  She hadn't wanted to have a hysterectomy because she wanted kids, and she did succeed in having a son in the meantime, so she was happy about that.  I haven't seen her since to find out how she's been doing. 

 

deanna14
Posts: 743
Joined: Oct 2008

Hello all! Happy to report that the CT and PET scans did show the enlarged nodes, but no metabolic activity that would indicate a reoccurrence! My oncologist is chalking it up to last by term effects of radiation. I do have lymphedema as a result of my treatment. I had cellulitis in my leg in Februart. I just wonder if that is contributing to the enlarged nodes. No one seems to know for sure, but they aren’t alarmed, just said we would keep an eye on it. Praise the Lord for good news this time!

Northwoodsgirl
Posts: 478
Joined: Oct 2009

So relieved to hear the enlarged lymph nodes are not cancerous. I think sometimes we can get enlarged nodes from

fighting an infection like a cold or virus.  Seems like since most of us have had so many lymph nodes removed and the nodes clean out or filter some ”junk” from our bodies that we all don’t have enlarged nodes more often. I too remember learning  much from Linda P and others posts back in 2009 when I was going through treatment. 

Lori

cmb's picture
cmb
Posts: 247
Joined: Jan 2018

Great news about the lymph nodes! Now that you are safely still in remission, I hope that your doctors can focus on identifying the source of your hip pain. 

EZLiving66's picture
EZLiving66
Posts: 1249
Joined: Oct 2015

I'm so glad to hear that Deanna. What a relief for you.  The good news made my day!!!

Love,

Eldri

ConnieSW's picture
ConnieSW
Posts: 1336
Joined: Jun 2012

I am so happy for you. 

What is the next step re the hip pain?

SF73
Posts: 207
Joined: Oct 2017

Congrats on your great news. It must have been such a relief to get the results of PET scan. Hope you can have some relief for your hip pain. 

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