The "Outlier" persists....

Donna Faye said:

So true - each of us is different

Such words of wisdom from OB!  My sister-in-law, a nurse, says I don't do cancer like anyone she has seen. I think that is true for each of us. One treatment works for me but not for you. Thankfully we are getting more and more options. I have learned one can live with cancer. I have for 30 years of off and on. I was lucky to have CT scans that found the cancer early each time and kept me kicking. Follow OB's advice - stay positive - drink deeply of life each day - dance like no one is watching! Enjoy giving thanks with just your close group this year - wear masks and say Hello from a distance.

xoxo Donna Faye

You are a remarkable woman.  Peace and best wishes, Oldbeauty

Fridays Child said:

Another outlier

Oldbeauty, I, too, am an outlier.  My original diagnosis in 2012 was endometrioid adenocarcinoma, stage 1a, Grade 1.  Hysterectomy followed by brachytherapy.  No evidence of disease for 6 years.  Then they found a pelvic mass that invaded my hip joint and spread to both lungs.  The statistics available at the time were not encouraging, but also not real  current.  We did low dose carbo/taxol with concurrent radiation, followed by full dose carbo/taxol.  Good results in general, but have not achieved NED status.  Was on letrozole for about 9 months, then switched to megestrol.  They say I could live a long time managing this as a chronic disease, but I'm still hopeful that some day we can get rid of it.  Almost three years later I'm doing pretty well.  For now I'm thankful to be here, to be able to get around, help with my grandchildren, spend time with my husband. 

Happy Thanksgiving to all!

See, we're full of glad tidings today. I do hope we oldtimers do provide a measure of relief and hopefulness to the newly diagnosed.  That we all begin with terror and through our solidarity and companionship here we can migrate toward healthier ways of managing the stresses that we all are subject to.  Best wishes, Oldbeauty

cmb said:

Thanks

Oldbeauty,

So glad you took the time to document your experience so thoroughly. It's a wonderful resource for those dealing with recurrences now and those who might in the future as you show that (1) even the "common" form of uterine cancer can come back later and (2) recurrences aren't always fatal.

Thanks for sharing!

Thank you, cmb. I am humbled by your own efforts to organize our site for easy reference and all the info about your own history that you share.  Best wishes, Oldbeauty

jan9wils said:

lung nodule

So I had a little spot on my lung that showed on the ct scan just prior to my hysterectomy in 2014. My gyn/onc consulted with a pulminary specialist who saw me while I was still in the hospital. He thought it was likely nothing, possibly scar tissue from bronchitis or pneumonia I had in the past.  I was diagnosed 1B stage 2 endometriod adenocarcinoma. I had external radiation and brachytherapy. But the pulminary doc wanted to follow up with me annually. Which I did. I had recurred to my abdomen, had chemo, ct scan still showed the lung nodule which was still to small to biopsy. I recurred again, had surgery and a follow up PET scan showed some activity in my lung, and the nodule had grown a bit. My gyn/onc didn't iike it and urged me to see the pulminary doc again. This was in the fall of 2017. The pulminary doc thought is was probably nothing but agreed to have me see a surgeon. The surgeon thought it wasn't anything but I told him my gyn/onc was quite concerned and I wanted a biopsy. It was not in an easy spot to get, but he agreed to do a needle biopsy just to "reassure me". He didn't do it himself, but had a doctor who was training with him do my biopsy. Unfortunately, I had a collapsed lung from the biopsy and had to be hospitalized for a couple of days. So I was just home from the hospital when the surgeon called  to give me the biopsy results. To his surprise, but not mine, it WAS endometriod adenocarcinoma. He scheduled a wedge resection for me. I followed up with chemo afterward.  I guess from my experience, I would say for you to go ahead with your gut feeling and push for the surgery. It is quite uncomfortable to have the drain tube in your lung, but once it is pulled out it is quite a relief. It was an easier surgery for me to recover from than my abdominal resections.

Thank you so much, jan9wils.  I called the recommended thoracic surgeon/oncologist today, and, good news, he had a cancellation and so I go for my consult this Friday.  I'm thrilled.  My node is in the left lower lobe and looks on the film like it is right up against the wall of the lung there, which suggests a simpler effort than yours was.  I'm not minimizing what a wedge resection could be, and I am 67, but otherwise in good health.  It's the prospect of a collapsed lung during any procedure that does concern me.  But I'll cross that bridge if/when.  Under the best of circumstances, I'd rather have this thing removed intact so that we can get as much tissue for analysis as possible, rather than puncture it for a biopsy and have "leakage." What I mostly am looking forward to is a single set of experienced eyes looking at my numerous scans sequentially to follow the various nodules that have been identified over the last 8 years.  (My latest rant against the faceless radiologists that simply read the next film in the queue is that this one mistakenly reported the nodule is on right and not the left. I plan to write her a letter (since you can't call them) and ask her to proofread her report and fix the error.  I will try (not very hard) to resist making the observation that it's mistakes like hers that cause people to have the wrong limb amputated.) I read somewhere that benign nodules do not respond to chemo drugs so the fact that the multiple nodules in 2017 resolved after chemo makes me suspicious now.  But I would much rather have the thing gone than risk waiting and have more show up, perhaps robbing me of an option I have now.  We'll see.  If I do end up having the wedge resection, I likely wil PM you to solicit advice on how to prepare and what to expect.  Thanks again for your response.  Best wishes, Oldbeauty

SF73 said:

Best of luck

with your consult, oldbeauty. Thank you so much for documenting your journey. You have no idea how valuable these are especially for women who had the garden variety endometrial cancer but had challenging journeys. I would include myself in that group. It is good to know we are not alone. So we are outliers but not isolated. More like the long tail of a distribution (mathematician humor )

SF73, your story also is most instructive.  I wish you continued good health.  Best wishes to you and your lovely family.  Oldbeauty

CheeseQueen57 said:

Mistakes

I have had local smaller hospitals make multiple mistakes (eg miss counting vertebrae on scans, losing test specims). I resort to writing the oversight agency for hospitals, Joint Commission. Google it. They have a form and are obligated to follow up with the hospital.

I will look into that.  I may give myself the satisfaction of writing to her and telling her if I do not see a corrected report on my patient portal withn 30 days, I will file a complaint with the agency you identified.  I come from a place where precise language and proofreading were the norm.  It angers me no end to see such shoddy workmanship in a field that also is about precision.  The doctors all just shrug  it off.  OK. End of rant.  The sun is shining and the leaves are calling.  Good to "see" you, Susan.  I hope you are feeling more comfortable and engaged these days.  Happy Thanksgiving.  Best wishes, Oldbeauty