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Endometrial Cancer dx - Lung nodules CT Scan

calliegirl
Posts: 48
Joined: Jan 2018

Hello all...I'm new to the board, just joined. I was dx with endometrial cancer on November 1, 2017. Had a full hys, including the removal of both ovaries and tubes on December 8th, 2017. I am now in surgical menopause at the great age of 40!! :) There was no prior history to gyno cancers in my family history. So it came as a shocker. I am still recovering from the surgery and get tired often.  I have always been in shape, cross fit, weight training and good BMI. Unfortunately, since this dx, I feel my whole body has changed in a matter of weeks! I was told that my CT Scan showed two - 3mm nodules one in the lower left lung lobe and another in the middle upper right lobe. Along with a shadowing in the center of my chest. I get shortness of breath and have a constant cough.  My oncologist/gyno want to repeat the scan this March, as it will make 3 months. Can it be possible...that my cancer has metastasis? I was dx with Stage 1A. Grade 1 with lymphovascular invasion, limited to the uterus. The current course of treatments are just observation , attending all my 3 month check ups. Thoughts?

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txtrisha55
Posts: 684
Joined: Apr 2011

Sorry you had to find us, but glad you did.  There will be a lot of ladies to add their input to you.  My opinion is to get all your reports and get a second opinion from a different cancer dr.  Have you received your pathology report from the hys?  Did the dr state you should have chemo or radiation?  If the CT is showing things that should not be there, waiting is not an option.  You have to be your own advocate.  My opinion only.  Good Luck trish

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derMaus
Posts: 552
Joined: Nov 2016

My questions are the same as Trish's: what was/is your current treatment, i.e. are you having chemo and/or radiation? Without that it's hard to give an opinoin. Please let us know so we can better help. B

MAbound
Posts: 829
Joined: Jun 2016

Those are the troubling words in my mind. Lymphovascular invasion is the same thing as lymphovascular space invasion and is defined as the spread of a cancer to the blood vessels and/or lymph system. It's a pathway to metastasis and I'm surprised you weren't treated with at least chemo with that finding. Endometrial cancer has a preference for metastasizing to the lungs and that CT scan and your other symptoms are very concerning. You need a 2nd opinion pronto. This does not sound like a watch and wait situation.

You may want to read this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4549160/

calliegirl
Posts: 48
Joined: Jan 2018

Thank you for the link. I did read that extact link when I got the dx of LVSI and it is disheartening to read that the both recurrence and overall survival is not good in low grade Endometrial cancer. I'm contemplating a second opinion.

 

Again thank you.

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Charissa
Posts: 124
Joined: May 2016

 

They too found a 2mm pulmonary nodule in my right middle lobe, a 4 mm pulmonary nodule in my right lower lobe, and a 2 mm pulmonary nodule in my left upper lung during my initial CT scan in May 2016.  Last year, I seen a lung oncologist.  He is not worried about them, as these sizes are common as scar tissue, allergies, etc.  I think they have to arrive at a larger size, before they consider them cancer.

 I am undergoing another CT in the next few weeks to see if they have grown any. It has been six months since my last scan.  Google lung nodules and you will see they are quite common.

 But, again, like all the other women have encouraged you to do – be your own advocate.  I didn’t take my radiologist’s word or oncologists word. I wanted to hear from a lung oncologist that these were nothing to be concerned with and get established with one early on, just in case they do develop into cancer.  So, I begged and pleaded for them to give me a referral to one.  He (lung oncologist) thinks I’m being over the top and the scans are going to do my body more harm than good.  Oh well, I have learned the hard way to be your own advocate.  I see him in a few weeks, to go over the results. I’ll just take him a nice box of chocolates and tell him how much I appreciate him taking great care of me and being understanding of my concerns.  You definitely want a GREAT treatment team.  I’m your proactive type of girl vs. reactive.  Lol!

calliegirl
Posts: 48
Joined: Jan 2018

All, thank you for prompt responses and support means a great deal !!! November 1st, as we all know well my life too changed hearing the words cancer.

My pathology report states Figo Grade 1, with 33% myometrial invasion and angiolymphatic invasion. Greatest dimension of my tumor was 2cm. Histologic type endometrioid adenocarcinoma. States Lymph-Vascular Invasion: present. Cancer was not found elswhere other than within the lumens of my fallopian tubes. Stated: detached fragments of endometrial carcinoma within the lumens only. Tumor was limited endometrium/or/invades less than 1/2 of the myometrium. My results also showed a mismatch of repair protein expression, and it has been suggested I get screened for Lynch syndrome.

I know that I never had nodules before on my lungs, and also a shadowing in the center, radiologist stated an abnormal lung field findings. My gyno/oncologist said he is not too concerned but wants to compare the results when I go for my 2nd scan in March. I am confused about the whole LVSI. If is present then why not provide treatment? When I asked this question I was told because my cancer was low grade and that "they believed" LVSI was only present within the uterus. I just find this hard to believe and knowing about these nodules....is it possible I'm over-reacting??? Can one go from stage 1 to stage 4 that fast?

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Charissa
Posts: 124
Joined: May 2016

The only way you are going to put your mind at ease, is to get a second opinion.  Again, I don't think the nodules are something to be concerned with, due to their size, at this time. My report states Indefinite (none seen, but can't rule out, as early cells cannont be seen) for Lymphovascular Invasion, 5.5 Tumor Size, and .3 mm depth of invasion in myometrial wall, Stage 1a NO, FIGO (Grade) 3.  Again, get a second opinion from an expert in this field - it can't hurt to expand your treatment team.

Wannabeatit
Posts: 97
Joined: Dec 2017

I was diagnosed UPSC Stage1a less than 1/2 myometrium invasion with extensive LVSI. The doctors advised chemo 6 rounds and 3 brachytherapy treatments based mostly on the LVSI. I would certainly look further into why they haven’t suggested that. Anything more than three blood vessels affected is considered extensive. They might treat a lesser degree differently.

 

calliegirl
Posts: 48
Joined: Jan 2018

thank you so much for your response....i hope you are doing a lot better...and stronger...

it is strange really...because he told me I was intermediate risk level with the kind of LVSI I had, and the only reason why they elected no further treatments because of my age 40, I am in good health prior to the dx of this cancer, and that the LVSI was supposedly only contained within the uterus...yet, I find this hard to believe because my thoughts are once it is in LVSI system it can go anywhere...and now my lungs have 2 nodules and unspecific shadowing within the lung field. ugh sigh..

Wannabeatit
Posts: 97
Joined: Dec 2017

I hope you can get answers as quickly as possible. I think you need to push your doctor a little harder. Please keep us posted. 

oldbeauty
Posts: 183
Joined: May 2012

I share your diagnosis of endometrioid adenocarcinoma; Stage IC, Grade 2.  I believe my cancer had penetrated more than 50% through the uterine wall but all the other organs and lymph nodes removed were clear.  Nevertheless, in 2005, my surgery was followed by external pelvic radiation.  Brachytherapy was planned but later scrapped bc the doctors regarded me as cured and felt that the damage of brachytherapy was not warranted for my age (51).  Five years later, I had a recurrence to a para-aortic lymph node and the CT scan also showed a suspicious lymph node above my clavicle and scattered lesions were seen in my lungs.  At that point, doctors indicated that the radiation to the para-aortic node was "pallliative" (I was in pain because the tumor was pressed against a nerve in my sacral spine area) to make me more comfortable but not to cure me.  The indication was that I could expect to live perhaps 12 months.  I was started on high dose progesterone and, happily, I lasted another five years with no evidence of disease until my second recurrence in November 2016 when four small nodules were detected in my lungs.  They were too small to biopsy and I elected to go with immediate treatment rather than wait 3 months for a re-scan to see if they grew.  I went through 12 rounds of chemo in 2017 and am now, again, classified as "no evidence of disease."

Based on my personal experience, an early stage, low grade cancer is no guarantee of "cure."  I don't understand your treatment limited to surgery when cancer cells were found outside your uterus in a lymph node.  Once the cancer gets into the lymph-vascular space, it can go anywhere.  Certainly, lung nodules might have an innocent explanation but in conjunction with a cancer diagnosis, it raises serious questions.

Looking back, I wish I'd had the opportunity to have my lung nodules biopsied but waiting for additional growth is hard.  You're 6-8 weeks away from a re-scan and you don't yet have a second opinion provider lined up so maybe the wait is worth it.  But I join with the others in urging you to get a second opinion.  Hopefully, you llive in an area where there are several gynecological oncology practices to choose from.  Please investigate your options and choose the one with the best academic credentials and patient recommendations.  And if you are able to get a biopsy, please consider doing that.  Or, perhaps surgical removal will be possible.

But I would not be complacent.  The appearance of suspicious nodules so soon after your first diagnosis would concern me.  I'd not be so quick to accept the doctor's certainty that it's nothing.  It's too small to diagnose reliably now, so how does he know.  Good luck to you and best wishes, Oldbeauty

evolo58
Posts: 293
Joined: Dec 2017

I would be concerned, but not worried .... yet. 

Did you have a CT scan before that did NOT show any lung nodules? There are such things as benign lung nodules ... actually, they're pretty common. Here is an article that shows what I mean:

https://www.verywell.com/lung-nodules-symptoms-causes-and-diagnosis-2249304

As the article indicated (and I found out re a few friends' experiences), CT scans "can find find lesions ... but don't give a measure of what is happening in a nodule." 

However, that being written, I would be concerned about an infection or inflammation at the very least; particularly with that shadow. There is all sort of ... stuff ... going around lately. Also, I doubt you're going to be too relaxed for three months knowing there is a chance ... perhaps not a high one, but a chance nonetheless ... that there may be cancer. A second test or second opinion might be good for your peace of mind. At the very least, perhaps the second doctor can explain WHY a watch and wait approach is best.

 

 

TLC1ANGEL2018
Posts: 2
Joined: Mar 2018

 

I was diagnosed in 2004, went through a complete hysterectomy & 5 1/2 weeks external radiation & 3 internal radiation treatments.  I was stage 3 - entering Stage 4.  My cancer returned a year later, and it was attached to my spleen & pancreas.  They removed my spleen, the tail end of my pancreas, and a spot on my stomach.  In 2013, a mass appeared in my abdomen & it was removed and I was on the chemo pill for almost 3 years.  I recently had CT's showing growing nodules in my lungs.  I've gone through blood work with a pulmonary dr & they feel it's reoccurring endometrial.  I'll have a CT again in about 2 weeks to determine the final results & treatment.  I was hoping after 3 times, I was done with Cancer, but I guess the battle continues.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

TLC, I had a hard time finding you post in this thread but was determined to get in there.  I am so sorry to hear that you continue to fight this beast, and hope they can help you find something again to beat it back.  Hugs dear one.

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EZLiving66
Posts: 1320
Joined: Oct 2015

TLC, maybe start a new post so we can track you and your treatment better?  Sometimes it gets hard to find in a longer thread.  Did you have UPSC as your original diagnosis?  Even though the cancer has come back, you've made it 14 years with a Stage 3/4 diagnosis.  We have had some ladies here who didn't make it with a Stage 1 or 2.  

Please keep us updated on the doctor's findings and your treatment.

Love,

Eldri

MrsBerry
Posts: 102
Joined: Dec 2017

We women are often conditioned to go along to get along , and not make waves. But this is YOUR life. Push for an explanation with evidence behind it, and if you are not satisfied, look into a second opinion. Best of luck!

saltycandy13
Posts: 167
Joined: Dec 2017

I got my pathology report and had the same grade adenocarinoma you have but it states no invasion to the lymph system.  So you should see somebody else.  I don't like the sound of it.

As far as the lungs go, I was told years ago I had an atypical lesion on my right lung.  Upset me badly.  Had it re-evaluated and it turns out it's a scar from pnemonia.  But check it out with somebody else.  I don't like it when doctors don't answer specific questions and blow you off!

MugsBugs
Posts: 103
Joined: Jan 2018

Congratulations on the good pathology report!  That is awesome.

Earlier this month I took my Dad to the pulmonologist (he has emphysema and fibrosis).  There were some bright white specks on his scan and the doctor asked him ‘Have you been around chickens?’  Dad grew up on a farm and in his early 20s lived in a rooming house that was converted from a chicken coop. Apparently there is a virus that is non-threatening but manifests itself as small scar tissue in the lungs.  I could see them, small bright dots.  The rationale For this story is to show that probably only a pulmonologist would recognize this type of nuance in a scan.  

saltycandy13
Posts: 167
Joined: Dec 2017

When I get a chance, I want to post my entire pathology report here.  Maybe it will help someone.  It was Adenocarcinoma Grade 1 with no invasion of anywhere else.  No further treatment needed.  I am hoping the specifics will help and explain what exactly was going on in my reproductive system.

Karen

evolo58
Posts: 293
Joined: Dec 2017

Histoplasmosis.

I am going for a lung scan as well before surgery, and I'm pretty darn sure they'll find it. My mother wasn't the cleanest when it came to keeping the coop tidy, and my brother has already been diagnosed with it in the past. 

MAbound
Posts: 829
Joined: Jun 2016

It's the nodes and shadow in combination with your symptoms of shortness of breath, chronic coughing, and fatigue that make this worrisome even though there are other possibilities as others have suggested. Have you had any fever since surgery that this could be a lung infection? If you had your surgery back in November and haven't had other treatment since then, you should be feeling more like your normal self by now. You're probably getting tired of us saying get a second opinion, but I really think living with the worry about what's going on has got to be worse.

calliegirl
Posts: 48
Joined: Jan 2018

for all your responses, advice, support and concern...Yes, I am thinking strongly about getting a second opinion. I truly do not feel comfortable with the path report and my oncologist telling me that LVSI was present

and yes the nodules are way too small to biopsy...i was thinking to get the CT Scan done in March, compare it to Dec 2017 images, and if there are changes see a lung specialist...

it's all so strange...because I try my very very best not to get paranoid or worried with a new pain or discomfort, especially in my pelvic area...but there are some days it's too difficult not too...

Again many thanks ...hugs and strength to you all Cheers! XO

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Charissa
Posts: 124
Joined: May 2016

Oh, Calliegirl, we can all relate. It is normal, after a dx, such as ours to immediately assume it's returned, whenever something doesn't feel right. I can't begin to tell you how much my body has changed, in my lower abdomen - mostly in my bladder. It has never been right since the surgery and does odd things. I can't tell you how many times I have been to Urgent Care thinking I have a bladder infection, for them to only tell me everything is normal.  As much as I like to care for myself in a healthy way, I welcome drinking the barium and having my CT scans.  When they come back NED, I seem to be able to rest for the next six months. When they first told me I had the nodules, I too, had shortness of breath.  Not sure if it was because I knew they were there or if there was something truly going on.  However, after I got the second opinion, I no longer thought twice about them.  Again, I will be having my scan in the next few weeks to see if they have grown any in the past six months. Do what you have to, to find peace in this journey.

MoeKay
Posts: 196
Joined: Feb 2004

I was diagnosed with stage 1C, grade 2, endometrial adenocarcinoma in 1999, and one of the risk factors I had for recurrence was extensive LVSI.  I had several other risk factors which you don't appear to have such as outer-third myometrial tumor invasion, lower uterine segment involvement and a fairly large tumor, approximating 4 cm.  I was treated at that time with both internal and external radiation.  Chemotherapy was not standard of care in 1999 for early stage endometrial adenocarcinoma. 

If I were you, I would not only get a second gyn-onc opinion on your treatment plan, I would get a second opinion on your pathology by a gyn-pathologist.  For example, I'm puzzled by the finding regarding your fallopian tubes.  Has someone explained to you the meaning and significance of the statement: "Cancer was not found elswhere other than within the lumens of my fallopian tubes. Stated: detached fragments of endometrial carcinoma within the lumens only"?  After my diagnosis I called the pathologist directly to speak to him about findings on my pathology report.  You might want to touch base with the pathologist who wrote your report as a starting point.  Also, do you know whether your LVSI was extensive or more limited?  If it was not extensive, perhaps that may have also factored into your doctor's no chemotherapy or radiation recommendation (in addition to your young age), but only he can answer that question for you. 

If I were you, I would also see a pulmonologist.  You have more than just a few tiny nodules, which may or may not be of any significance.  You also have a "shadowing in the center of your chest," as well as a constant cough, shortness of breath, and tiredness.  Given these factors, I believe a consult with a pulmonologist is in order.  In 2009, I went to the ER for a chronic cough.  I had troubling findings on a chest CT.  I was misdiagnosed in the ER, and it took me several months to get a correct diagnosis, but eventually I was diagnosed with and treated for eosinophilic pneumonia.  Along the way, I was told that there was a suspicion of metastatic cancer based on the CT findings, which eventually was determined not to be the case.  But while I did not have metastatic cancer to the lung, I had a very serious medical condition that required a lengthy course of treatment. 

Good luck with getting answers to all your questions.  I wish you the best of health.

 

calliegirl
Posts: 48
Joined: Jan 2018

thank you, I hope you are doing well ...appreciate all the advice...

my oncologist told me I am at intermediate risk for recurrence, but given my age 40 and the low grade tumor and stage , it was decided by a panel of doctors , some weekly tumor board conference (i have the report) to only keep an observation...

the whole LVSI thing is what confuses me the most, because in my pathology report it does not stipulated how extensive it is...only that it was present.

it states that the tumor limited to endometrium or invades less than 1/2 of the myometrium that regional lymph nodes cannot be assessed  and lymphovascular invasion - present.

im waiting on my next CT scan (lungs) in mid march, then my 3 month follow up with my oncologist is in mid April...thinking to discuss further....

 

SF73
Posts: 252
Joined: Oct 2017

Sometimes oncologists take calculated risks. After my hysterectomy (uterine, cervix, and fallopian tubes were removed, ovaries were left) the pathology report revealed a grade 1 stage 2 (less than 50 percent invasion, the stage 2 is due to minimal invasion of cervix) endometrioid cancer (the garden variety) AND scant number of atypical cells in the pelvic wash. The fallopian tubes were negative for cancer. My doctor must have decided that due to my age (44) and the grade of the tumor (1) and the histology (endometrioid, the least aggressive form) just observing should be sufficient for me. I was happy to hear I was done with this chapter of my life and didn't question this knowledgeable person who was basically telling me not to worry. I didn't seek a second opinion and in three short months I had a recurrence of that low grade cancer on my right ovary (a 6.9 cm mass) How I wish that I sought a second opinion at that time. 

calliegirl
Posts: 48
Joined: Jan 2018

Thank you so kindly, for all your advice, words of encouragement...and support..

I am planning on get a second opinion, and in doing so I decided to get a copy of my CT Scan report.

This is what he radiologist reported from the films:

The trachea and central airways are patent. There is a biapical pleuroparenchymal scarring. 2 mm ndule right middle lobe and 3 mm nodule left lower lobe.

No consolidative opacity.

Impression: Two discrete pulmonary nodules measuring up to 3 mm. Continued follow up CT is recommended to exclude metastatic disease.

sigh...

Northwoodsgirl
Posts: 506
Joined: Oct 2009

We can never be too vigilant. I also had a spot found on my lung at the time of my total hysterectomy. Consult with pulmonologist and watch for two years. She determined it was scar tissue probably from having had pneumonia at some point previously. It is so anxiety causing. The doctors often are concerned about the rate of false positives imaging tests can create but they also worry about not doing the imaging procedure and missing cancer. Praying it is just scar tissue.

Lori

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TAyers
Posts: 86
Joined: Aug 2012

Hello, 

I am so sorry you had to become a memeber of this site. I had Uterine Papillary Serous Cancer and had surgery, chemo and radiation! 4 years later I was told I had a lung nodule in my middle right lobe. They watched it every 3 months with a scan and once it became a 1 cm they operated on it to take it out and it was UPS! Now a year later after second chemo was done  they have found one in my lower right lobe and will be having that surgically removed! The radiologist who read the scan didn’t catch it nor my oncologist, but my thoracic surgeon did! Be your own advocate and may God go before you! Tami

calliegirl
Posts: 48
Joined: Jan 2018

Thank you immensely for responding. Means a lot. As we know well, going through cancer is difficult. So many questions...concerns. I am too sorry that you are also a member of this site.

Do you think I should get a PET scan? I know the nodules are still too small to biopsy.

God bless you! Missy.

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ConnieSW
Posts: 1415
Joined: Jun 2012

sorry to hear you are dealing with this again. Good luck with the surgery. 

Northwoodsgirl
Posts: 506
Joined: Oct 2009

PET can’t hurt. You know physicians have insurance companies watching the types of imaging physicians do. They actually hire companies that have decision making algorithms that doctors are suppose to follow in terms of what imaging technology to start with and when it is appropriate to do one imaging procedure over another less costly imaging procedure. I never had a PET scan but then I had endometrial uterine cancer. I only had a CT scan once and that was before my hysterectomy. If you want a PET scan tell your oncologist or pulmonologist why you think you should have one. Ask your doctor why they wouldn’ t allow you to have one. Demand a PET scan unless your doctor can give excellent rational why not. It is unconscionable that two other doctors missed the cancer in lung. Believe me their is a variance in physicians abilities to read a wide variety of imaging technology results! 

calliegirl
Posts: 48
Joined: Jan 2018

PET scan would not hurt...agreed. I am scheduled for a repeat ( 3 month) follow up CT scan on both my lungs and abdominal/pelvis with and without contrast....

What really is getting to me...is the fact I had to call my oncologist's office, and mentioned that I found out only because I logged onto my insurance health record and saw that my CT scan prior to my surgery had showed 2 nodules , 1 located in the lower left lobe and the other middle upper right lobe, along with scarring and thickening in my lungs...

the radiologist who read the report stated a repeart in 3 months and put on the report that the secondary dx is endometrial cancer , follow up required due to rule out metastasis...

i am truly  confused , because my pathology report for endo cancer was Stage 1, Grade 1 , LVS invasion...

Is it possible something was missed? Can cancer spread that quickly? Adenocarcinoma is the tumor dx with...

if I did not call my oncologist office, probably would not even gotten this repeat scan for comparison... I am so confused...

saltycandy13
Posts: 167
Joined: Dec 2017

I feel for you when you say you are confused.  You need answers and ASAP.  The worrying and anxiety is nothing to them but to us, a big one!  Please see what else you can find out and from a different source if you can.

I don't think cancer can spread that quickly not with the type you have ben diagnosed with.  I had the exact same diagnosis only no mention of lymph nodes.  I wish I could help more.  But I don't understand it either.  You are waaay to young for this.

Karen

Doo57
Posts: 9
Joined: Aug 2018

Hi Callie!  I was just wondering how you are doing now and what you found out about the lung nodules? Hope this finds you well!

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