Just found out yesterday
Hello everyone - just found yesterday that I have uterine serous carcinoma. Don’t know the stage or much else at this time. I just found this site and have learned so much! I am 73 years old and have had some symptoms for several months. This is how it started: I’m really active physically and noticed during personal training sessions that I was getting low on energy. I noticed when I was out going daily walks around a lake that I was getting out of breath and had a pressure on my upper chest. Went to the doctor and blood work came back as showing profound anemia. Had to have blood transfusion. Then I had an endoscopy, colonoscopy, and a camera endoscopy. All clear. No signs of bleeding anywhere. Just before Christmas noticed spotting - went to the dr in January for exam and pap. Pap came back clear- then had 2 ultra sounds, a mammogram, and then hysterectomy D&C. The results showed cancer cells. Met with oncologist yesterday and got the diagnosis of uterine serous carcinoma. Will have scan this week / then hysterectomy on the following Monday. Spent all day yesterday and last night feeling sorry for myself but woke up this morning with a new attitude and found this blog. I feel much better today! Thank you all for your input and encouraging words.
Comments
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I'm sorry that you had to find this site, but glad that you did just as you were diagnosed. There are a couple of links in the FAQ topic that you might find helpful now: What do you wish someone had told you? and Tips for surgery and after?
The initial period right after diagnosis is very stressful for everyone. There are quite a few women here who have had your type of cancer, so please ask any questions that you may have now and others that come up as you move forward with surgery. We want to support you as you go through this difficult time.
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I'm so relieved you found your way here quickly, although I'm so sorry about your diagnosis. You are in good company here, women who have experienced the diagnosis and can help you with solid advice.
All the best in this most difficult time, as CMB wisely notes.
Deb
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Caledonia, I am glad you have found us. Please do not hesitate to post questions and reach out.
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Caledonia, we are here for you. I also had serous, hysterectomy, BSO, chemo and brachy. 2018. Good luck on your upcoming surgery and when you feel able, let us know how you are doing.
Denise
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Hi, Caledonia! It's good that you noticed the changes and pursued an answer, even if it's not one you wanted. Best of luck with your further treatment!
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Caledonia, I had the same type you do and finished treatment nearly 10 years ago. Encouraging, right? Your life is going to be pretty much centered on this for for some months now but as the others said, we are here to help, pretty much 24/7. Just reach out.
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Thank you all for your responses - so positive! One word that keeps coming up in the blogs that I read is that this is “doable”! That gives me hope in a scary situation. And I thank you all for taking the time to reach out to me. I’ll keep you updated as I go thru this process - I’ve already learned so much from your perspective and tips!
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Welcome, Caledonia
I, too, am glad you found us early and that can already feel the help and hope! I have to tell you that the long list of my friends that have already posted here is like looking at a list of the very heart and soul of this bunch! And quite a few others that will also be here for you!
Yes! ”Doable” is definitely a thing around here! As I went through chemo it helped to know that others got through it and I could do it, too!
😎, A
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Caledonia, I wholeheartedly second Cmb's tips to read What do you wish someone had told you? and Tips for surgery and after? (Cmb herself is full of great info.) The post that changed my life was this one by derMaus: "Lynch Syndrome, Tumor Testing, etc. The gene mutation you refer to - Lynch syndrome - can predispose you to all kinds of nastiness, and at a younger age. Mine was not diagnosed until after I already had cancer, and blessedly few in my family have had any problems. You will definitely want to request that test if they haven't already done it. You may also want to consider two other types of testing: geonomic tumor testing, usually done by Foundation One or similar. Last May the FDA approved Keytruda (immunotherapy) for use in any cancer, regardless of origin, that has been identified as having microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR); these attributes are defined in the test. The geonomic report will also list what treatments will work for your tumor type, e.g. immunotherapy, etc. Most times insurance will only pay for F1 after you've had a recurrence, so you're likely to be assigned the off-the-shelf formula as your first round of treatment unless you advocate strongly otherwise. Currently immunotherapy is used only in cases of recurrence, not as a first line, although that may be changing soon.
The other testing I wish I'd known about is a tumor assay. What they don't tell you is that chemotherapy generally has a low success rate. Pretty much everyone here who's had chemo was sent directly to the standard regimen, taxol and carboplatin. A very few people had something different to start with - I think KVDyson had tumor testing up front and a different course of treatment - but everyone generally gets the standard package. With luck you won't need chemo but, if you do, a tumor assay can help determine what type of chemo will work on your individual cancer. Note that tumor assays can only be done on live tissue so you have to request it before surgery. If I had to do it over I'd do the assay as well as the geonomic testing, even if I had to pay out of pocket for both."
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Here is an update on what I’ve been going thru. Last Thursday I had a PET/CT scan and had some good news. No lesions on liver pancreas spleen or adrenal glands. No signs in lymph nodes - no swelling in abdomen, no problem with kidneys. Also had EKG and blood work. All was “doable” although the pet scan was a little scary since I never had one. But I did good - the technician was wonderful.
Had robotic surgery on Monday and spent the night in the hospital. Everything went ok. As soon as the dr gets the pathology results she we’ll plan the next steps.
im home now and still a little sore from the incisions but am drinking a lot of water and walking around. So far everything seems to be ok. Taking Tylenol for pain and eliquis to prevent blood clots.
Just take it day by day.
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GREAT to hear from you, Caledonia! It sounds like you are taking care of yourself in the recovery stage and we look forward to what is the plan next. I wish I had walked more after my surgery and am always happy to hear others do.
Hugs
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Good for you! And total understanding re scariness of all these tests. I have personally become familiar with CT w/ contrast (not bad at all after fear w/ initial one); breast MRI (harder but yes, doable); MRI guided needle breast biopsy (better than I thought). Congrats re good news!
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I'd also say don't hesitate to ask for stronger pain management if you need that. I have uterine GCS/MMMT, different from you, but part of my carcinoma component is what you have: serous. You've got this!
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I have nothing to say that hasn't already been said in terms of advice, but very glad to hear that you are handling things well. I just wanted to let you know that the women on this discussion board are wonderful and helped me tremendously. Sending good thoughts your way. :-)
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Thank you all so much for your kind words and encouragement. I hope everyday I get a little better. Am feeling tired tonight - probably from the laps I did from living room thru dining room thru kitchen! 40 steps per lap and I did 20 laps today! A far cry from my usual 7500 avg steps a day before- but I will get there again!
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Caledonia, walk certainly if that feels good, but please don't overdo it. A few members have gotten into deep trouble pushing too hard too fast. Even robotic surgery is still major. I know you want to push it, but this is a marathon, not a sprint. Just a cautionary note; very glad you're recovering well.
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Caledonia,
I am late in welcoming you. You can see the wealth of experience and wisdom from the ladies here. You are in a family now. Come here with questions and concerns and you will get great advice. Come here with your fears and anxiety and you will be heard and comforted. It is such a help to me!
You are doing great! I am glad you had such an understanding tech for your PET. Those scans are still scary for me. Keep us posted about your treatment plan.
I am a daily walker, about a mile a day. I find it really helps me with my mood to get outside and walk beside the usual benefit of maintaining and building strength. Easy does it. ((Hugs))
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Caledonia--I love your name, I have to say.
We are all here for you.
Deb
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