The "Outlier" persists....

oldbeauty

Good day, Ladies.  I am posting today mostly because I do think it help others newly diagnosed to hear life experiences that challenge the generalized statistics that we all know and dislike.

I am a 15-year survivor of endometrioid adenocarcinoma who has been up to bat three times so far in the treatment sphere, likely heading to another at bat.  I seem never to have fit into the generalized literature about this disease.  I was early stage, "garden variety," histology, with frontline treatment in 2005 that was hysterectomy and external beam radiation.  I was assured I was "cured," and therefore spared brachytherapy.  Only I wasn't.  I recurred in 2012 and was told I'd likely expire within 12 months.  I received "palliative" care--more radiation to a malignant para-aortic node that was causing debilitating leg pain, and placed on high-dose progesterone.  Scattered lesions (not biopsied) in my lungs resolved along with the para-aortic node and by August 2014, I was NED.  So, I did not expire as predicted. Yay!!!  I recurred again in December 2016 with the discovery of several small nodules/lesions in both lungs.  These were not biopsied, but my new oncologist said he presumed they were malignant and recommended I submit to chemo, which I did for most of 2017 (12 rounds altogether).  At the end, I was NED but was told I likely would recur within a relatively short period of time.  At the end of 2018, one of my caregivers who believes that "peace of mind" is a medically necessary condition ordered a set of CTs, and we found a single pulmonary nodule in my lower left lobe.  It was 4 mm at detection, and 2 years later it has slowly grown to 10 mm.  Maybe it's malignant, maybe not.  Who knows?  It's still too small to biopsy reliably, and it's appearance is not susceptible to any rigorous analyis.  All we know is that it is changing.  Malignant tumors can be expected to double in size in 4 months; again, I am an outlier and happy to be one.

I want to give a shout out to Donna Faye, whose wisdom is awesome.  I channeled my inner Donna Faye this time around and I managed to remain serene in the face of "scanxiety."  Donna Faye counsel that thinking of CTs as your friend, and not your invitation to meet the Grim Reaper, is good advice.  I think I finally have come to internalize that CTs are a reliable early-warning system, and I should welcome them because I do believe that I still have options to manage this disease.

I saw my oncologist today.  I like her because she will respond thoughtfully to inquiries but she will not be drawn into speculation.  She can't say that Metformin is working for me, but she is willing to believe that it might be what is controlling the disease. The node is too small to make any conclusions about, and, while she says she finds it "hopeful" that there is still just one node after two years time, we are not yet out of the woods.  We will wait another 6 months and scan again, and hope that we will have entered a better phase in our battle with COVID if it looks then like we should do something.  Right now, she is not inclined to do more than wait and see.

I did ask her whether the surgeon she would refer me to if a biopsy showed a malignancy would see me now for a pre-surgical consult.  My reasoning is that if my history more probably than not supports an assumption that the node is malignant, it might be reasonable to simply send me for surgery and take a chunk out of the lung so that we can do the pathology and genomic/genetic testing to see what we are dealing with.  To me, to wait is to risk more nodules appearing which then would preclude surgery as an option.  She told me that was a reasonable option...but not during COVID.  Hospitalizations are increasing here, such that the Womens Hospital where the Womens Cancer Center is (within a large, multi-facility university research/treatment center) has had to open a wing for the overflow of COVID patients.  She said we needed to be conservative; that what I would have is a wedge resection and I should consider it major surgery with the possibility of complications and admission to the hospital or a convalescent facility.  She felt it was much too risky to expose me to that possibility; that she would feel much better with another 6 month wait and see.  But I was encouraged that she did not reject my analysis out of hand.  After all, women have prophylactic mastectomies and hysterectomies so why shouldn't I ask for a wedge resection without waiting for the node to get big enough to biopsy.  Were it not for COVID, this is what I'd be advocating for now.

So, I remain positive.  I feel well so I am well.  I am a proud outlier.  I wasn't cured, and I did not die within a year, and I did not definitively recur quickly after chemo.  You never know.  I do however, agree, as I've said many times, with takingcontrol58 and others who advocate trying to identify what your pre-diagnosis risk factors were and do what you can to change them to support a healthy body.  For me, it was to get moving, get control of my diet, fight for a Metformin prescription and work with a functional medicine physician to identify deficiencies in vitamins, minerals, and other substances that support healthy cell function.  

My story may reasonate most with those who share my histology, but I know there are others here with UPSC and MMMT who have defied the odds and also stand for the proposition that we all are a Statistic of One.  So, take care all.  Be vigilant and commit to engaging with and enjoying life.

Happy Thanksgiving.  Best wishes, Oldbeauty

MAbound

Thanks so much for this!

You have such a good head on your shoulders and your story when added to those of others sheds a light on the path that many are currently blazing for themselves. Cancer is not fun, but neither is it hopeless. That can't be said often enough. Our stories, together, do so much to help ourselves as well as each other. You just never know when what you have to share is going to be just what someone else needs to hear. You were here for me when I was a newbie and I am so glad that you are still here and still so generously sharing your wisdom. Thank you!

NoTimeForCancer

Thanks oldbeauty!  "channeled

Thanks oldbeauty!  "channeled my inner Donna Faye"....LOVE IT!

oldbeauty, so it appears you found the chat during your first recurrence.  That is very interesting to me.  I think how I wish I had found it before I went through any treatment, and at least now I know where to point anyone when they come and tell me they have cancer.  There are a lot of strong people here, all you have to do is read everything they have been through, but it is clear we need the shoulders of those strong people sometimes too. 

oldbeauty

MAbound said:

Thanks so much for this!

You have such a good head on your shoulders and your story when added to those of others sheds a light on the path that many are currently blazing for themselves. Cancer is not fun, but neither is it hopeless. That can't be said often enough. Our stories, together, do so much to help ourselves as well as each other. You just never know when what you have to share is going to be just what someone else needs to hear. You were here for me when I was a newbie and I am so glad that you are still here and still so generously sharing your wisdom. Thank you!

Useful info

Thanks, MABound.  I agree this site is invaluable for its free trade in info.  For example, Fluff's recent thread "Symptoms," asking for input about experiences that began one's journey to diagnosis, is quite useful.  It would appear that pain is a frequent complaint, which is useful for women to hear in order to overcome objections about something being "normal" for women, or worse, "all in your head." Best wishes, Oldbeauty 

Donna Faye

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

oldbeauty

NoTimeForCancer said:

Thanks oldbeauty!  "channeled

Thanks oldbeauty!  "channeled my inner Donna Faye"....LOVE IT!

oldbeauty, so it appears you found the chat during your first recurrence.  That is very interesting to me.  I think how I wish I had found it before I went through any treatment, and at least now I know where to point anyone when they come and tell me they have cancer.  There are a lot of strong people here, all you have to do is read everything they have been through, but it is clear we need the shoulders of those strong people sometimes too. 

Me, too

NoTime, I too wish I'd found this site back in 2005 so that I'd have known to have my surgery done by a gyn oncologist and not a regular OB/Gyn who chose an open surgery with an incision that precluded "gold standard" sentinel node sampling that might have found invasion to that para-aortic node before I suffered a distant metastisis.  But "meeting" takingcontrol58 spurred me on to ask for Metformin, and I fired my chemo onc who refused to write me a prescription (hugely ironic that this doc was in charge of my provider's participation in the clinical trial that paired Metformin with Carbo/Taxol). So many ladies here have made it their business to study this disease and share their discoveries.  I feel a great debt of gratitude for the education I've received here.  Just as much, though, is the emotional support available that can help each of us better fight the demon of despair.  Best wishes, Oldbeauty

oldbeauty

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

I just love you to pieces, Donna Faye!

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

Fridays Child

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!

TeddyandBears_Mom

Thank you Old Beauty for this

Thank you Old Beauty for this post and for all of the comments that followed. We are so lucky to have this forum that enables us to come together to share information, obtain support when needed and build such wonderful, positive relationships with each other.  I remember how afraid I was 5 years ago and how calm I became after spending a night reading all of the posts that were available. 

I hope your nodules stay small and that you are able to get that surgery in a safe environment next year. So glad you are an Outlier! :-)

Love and Hugs to All!

Cindi

cmb

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!

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!

Safe journey!

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

oldbeauty

TeddyandBears_Mom said:

Thank you Old Beauty for this

Thank you Old Beauty for this post and for all of the comments that followed. We are so lucky to have this forum that enables us to come together to share information, obtain support when needed and build such wonderful, positive relationships with each other.  I remember how afraid I was 5 years ago and how calm I became after spending a night reading all of the posts that were available. 

I hope your nodules stay small and that you are able to get that surgery in a safe environment next year. So glad you are an Outlier! :-)

Love and Hugs to All!

Cindi

Thanks, Cindi

I agree, this site is a life-saver.  And, I had a consultation today with my wellness/survivorship physician, who also is an oncologist.  She urged me to go ahead and seek a pre-surgical consult with the surgical oncologist she and my gyn oncologist recommend.  She says the longer this very slow growth continues, the most she's willing to suspect it could be nothing.  She said this surgeon is a lovely, caring doctor who has seen so many images of nodules over the years that he may well have something to say about its appearance over time.  And, she said just because now might not be the best time to do what I have in mind, it doesn't mean that if the surgeon and I think it should be done now that it can't be done safely.  So, I will proceed with seeking the consult.  At least I can decide whether I think we're a good fit.  Best wishes, Oldbeauty

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!

Kind words.

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

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.

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.

Great info!

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

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 )

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 )

Your story

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

CheeseQueen57

oldbeauty said:

Great info!

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

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.

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.

Thanks for the heads up!

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

cmb

oldbeauty said:

Kind words.

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

Like others, I'm deeply

Like others, I'm deeply appreciative of women like yourself who continue to participate on this board for so many years. I'm sorry that I didn't find my way here until I was done with treatment. But we all bring something special to this board. I'm happy to contribute where I can.

jan9wils

oldbeauty said:

Great info!

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

Good news about your consult!

Good news about your consult! I will check back to see how it goes. Wishing you the best!

Jan