Newly diagnosed with a recurrent Endometrioid Adenocarcinoma
Comments
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Oh Yes, the face flushing! I am glad you brought that up. I have forgotten. It was predictable each treatment and more annoying than painful. I used a cold compress until it subsided.
Port was the best thing! The procedure was quick and painless with local anesthetic. Doc gave me a card to carry with information on my port and a phone number. No one accesses my port without knowledge of how to use it! No one at my Primary is trained but since I am a hard stick, it has saved my arms during treatment, blood draws and PET/CT scans. I sleep on my side but it has not been a problem.
((Hugs))
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I just thought of a port tip to pass on. Buy some lidocaine cream over the counter to put on your port before treatment, just a small amount. Then cover the port with a small folded square of plastic wrap (if you can wrestle that off the roll) 😳 It keeps it from getting on your clothes and numbs the area pretty good.
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Yes! Here to with a possible reoccurrence in stomach fat. & watching a few other places.CA went from 3-7 to 300 in 4 months. Go for a biopsy in a week or two.
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Willow,
We are here for you! This is a very scary time with these possible reoccurences. Relieved your CA-125 alerted Doc and he is being proactive with biopsy. Please let us know about the results when you are able. In the inbetween time, breathe in deeply and exhale slowly and embrace hope.
((Hugs))
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Like others, I haven't been here as much since the site redesign. My hysterectomy was in 2012 for grade 1, stage 1a endometrioid adenocarcinoma. I had brachytherapy afterwards. I had hip pain prior to the surgery and it continued. After two years, they did a CT scan to check it out, with no concerning results. No evidence of disease.
After my five years, the gyn oncologist discharged me to my regular gyn. Hip pain continued. A year later I consulted my ortho doctor friend, at which time an MRI revealed a pelvic mass invading the hip joint.
Further testing showed the recurrence was not limited to the hip area, but had spread to both lungs. This led to weekly low dose chemo concurrent with daily radiation for five weeks, followed by full dose chemo (carboplatin and paclitaxel).
Port - they put in the port before the first chemo. A little strange, but not particularly uncomfortable. I've had it in now for four years. They told me the trick about using the lidocaine cream and plastic wrap, which I did. Eventually I went to be evaluated for a clinical trial. The lab part was in the middle of the day so there was no point in doing the cream. No problems, so I don't use the cream any more.
The chemo nurses referred to the red face as the "decadron glow." I used aloe gel on it because it was easier than trying to hold a cold cloth on my face for a long time.
I had good response to the chemo and radiation, although there remains something in the hip area, which the oncologists suspect is just scar tissue now due to its stable nature. I'm not sure if they'll ever be able to do a PET scan to check for activity. Nothing reported on the lung scans for a while now. At first I had CT scans every three months, then every six months, and now yearly.
Anyway, as of now it's been ten years since my initial diagnosis, and four since my recurrence was found. At recurrence, the statistics did not look good. Don't put too much stock in statistics, as they are compiled over time and the last few years have provided multiple new treatments. They're worth looking at, but may not apply much to ladies being diagnosed now.
Good luck to y'all with your treatments, and with just learning to deal with it. It's a hard thing to wrap your mind around, especially when you thought you were done with it! You will find a lot of support here, and hopefully with some family and friends.
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Friday's Child,
So glad to hear from you! I read your profile. Is the Megace you are on from the clinical trial and why you still have your port? I am only 6 months post treatment and Onc Doc says the port comes out in 6 months. I was stage IIIA and very hesitant about losing the port.
It appears from posts on this site, any stage and grade of endometrial adenocarcinoma is a force to be reckoned with. Initially you had the brachy. Now an Onc Doc might suggest the 6 rounds of carboplatin/taxol chemo for stage 1. I am not sure about external radiation. Yes, the protocol has changed over 10 years and hopefully new test trials will provide more new treatments.
Your hip reoccurence after 6 years was a shock! I am so sorry you had to go through that concurrent chemo/radiation therapy! Lung mets are mentioned often in this site.
You are an inspiring survivor of 10 years! An Awesome Warrior Mentor. You have crushed the statistics!
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RvGirl,
77 years young and still traveling between infusions. What a great time during a pandemic to have an RV. Awesome! I am soon to be 72 and I am so inspired by you. Thank You!I read your profile and just cried, stage IV and you had every treatment same as me ... then reoccurences. How did you feel on Keytruda and now on the Avastan?
I am going to talk to my Onc about not losing my port for this very reason.
Happy Trails. ((Hugs))
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Thank you, Lyn! It may be that if you have chemo as a first line treatment and achieve No Evidence of Disease, they go ahead and take out the port. Since mine was a recurrence, I guess they want to leave it there in case it's needed again. I'm stable, but not NED at this point.
The clinical trial would have been for the Keytruda/Lenvima combination. They decided I was probably not going to be eligible because the lung met that would have qualified me was just barely too small. In any case, the combination got approved for clinical use, so they suggested I save that in case I need it later. The Megace is an oral pill that I take twice a day.
Hope you are NED forever!
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I haven't recurred yet and I still have my port from when I started chemo five years ago. In fact, the doctor just asked me for the first time at yesterday's exam if I wanted to have it taken out. But it still works and doesn't cause me any problems. While the likelihood of a recurrence gets less each year, it's still common with my type of cancer.
So unless something comes along with the port that does cause a problem, I'm fine with leaving it in place in case I need it in the future. My mother never took her out after her last, finally successful chemo treatment, and it was still there when she died years later. She had many health issues, but the port was not one of them.
I'm not superstitious, but maybe it's like carrying an umbrella in case it rains. It never seems to rain when you do have the umbrella!
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Thank You Friday's Child,
Thank you. That is my sincere HOPE, that I stay NED. May you remain stable on Megace. I don't know how I would react to my lung met being too small for a clinical trial but, as you said, a moot point now that Keytruda/Lenvima are in clinical use.
My Onc Doc says only, " So far, so good!"
I think, like cmb states, I may want to keep my port handy fir a rainy day.
Just like the poem about each Day of the Week's Child...you are loving and giving.
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Thank you. Does anyone have Anything like this as a reoccurrence or secondary outcome?
Peritoneum/mesentery: Extensive mesenteric deposits are present for example on image 80/3 measuring about 2.1 cm as well as multiple omental nodules with some degree of conglomeration in the lower abdomen for instance on image 56/8. Trace ascites is present.
CT Pelvis:
Trace pelvic ascites and omental nodularity as described. Post hysterectomy.
She says if confirmed by a biopsy I would go back to the former chemo first & add two new drugs if I am vetted into a trail they have. MD Anderson was not doing a cat scan unless systems appeared & said it wasn’t recommended to do them. I had been cancer free supposedly since surgery Feb 2020. My local oncologist wasn’t comfortable with that wait for symptoms idea and eventually said she wanted to do a cat scan. I would have done that sooner had MDANDERSON said to. If anyone has made it through this type of reoccurrence or secondary …..or extended life & stretched quality of life please let me know. I know hope and faith & moving on with my present as upbeat as possible is critical to survival but I’m having a hard time finding my hope …though not my faith… & moving forward. If the biopsy confirms I think it’s best to quickly try to sale and move out of the home I adore & have been blessed with for 20 years in order to put less stress on family if I take a sudden worse turn. If It was totally paid off I might try to hold on. Trying to decide major issues while dealing with cancer is overwhelming. I guess I’m wanting a miracle through my waning hope & still ever faith but my present reality begs me to also plan for the worst as well the best I can while I feel well enough.
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I had my port in for over six years but my local health center refused to have it flushed. They wanted me to travel over 2 hours away for a 5 minute flush. I then found a local radiologist to have my port removed after about three months of not having it flushed.
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Willow,
I am troubled to hear of the report on your pelvic CT. MD Anderson was waiting for symptoms despite your elevated CA-125? I have not experienced this outcome on a CT.
Thank God for your local oncologist decision was not to wait and order a CT immediately!
You have not had the biopsy as yet and are feeling 'well enough' right now. It sounds like a plan is in place should the biopsy report metastasis. Clinical Trials have produced so many of the treatments that maintain the lives of many women on this site today. The two new added drugs in the protocol are your hope. Your Faith has not failed you. Cling to that faith. I will pray with you.
I hesitate to make decisions when fearful & anxious. I feel my decisions become clear when the time is right. I like to picture you comforted by the home and surroundings you have loved for 20 years. ((Hugs))
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Good morning, Ladies
I don’t know why I haven’t posted on this thread in a while…..I swear, it’s harder to keep up with “where we are” on this site than it used to be…maybe it’s just me…
I hope you’re doing OK, HTFG! My GO has a similar opinion to cmb’s about keeping the port for a while after chemo…two years. Ugh. What he said was, “It’s like Murphy’s Law. Those who get them removed tend to have recurrences and those who keep them, do not.” I said, “What??? Don’t tell me that!!!” Seriously…..that was NOT a scientific answer!! I need science, not idioms!
And Willow oaks, like Lyn, I hate to see you make a big decision about selling your beloved home while you’re kind on in the throes of uncertainty. They always say try not to make any life-altering decisions during the first year after a loss or tragedy.….and I think this cancer business qualifies! I’m not suggesting you wait that long, but I hate to see you do it now! :))
Prayers for y’all to get through this and be well again!
❤️, Alicia
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Alicia,
That is a superstitious comment on port removal that no survivor wants to hear! I noticed my insurance denied my heparin for my last flush. I guess you are supposed to be in active treatment. The cost was minimal so I will keep paying it every three months. I will see if the ONC even remembers his statement about removing it in 6 months. He is elderly and may forget.
Willow,
Thinking of you. Check in with us when you can on your outcome and possible treatment.
((Hugs))
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