• Newly diagnosed. Looking for others with same diagnosis.

    Asked by Kathykwaz on Wednesday, July 18, 2018

    Newly diagnosed. Looking for others with same diagnosis.

    So my diagnosis has been quite a journey. I had a grand mal seizure on June 21 and was rushed to the hospital where a small brain lesion was found. It was totally removed. Originally diagnosed with plasmablastic lymphoma but the diagnosis did not make sense to my doctors because I had no signs. I had a pet scan and bone marrow biopsy and other tests and everything was negative. That lymphoma diagnosis was retracted last week and I was referred to a gyn/oncologist to see if that area was the source. And it was. I have just been diagnosed with uterine cancer. Adenocarcinoma with clear cell features. Recommended for a hysterectomy last week of August. To say I am totally freaking is an understatement. Looking to connect with anyone in a similar situation. Blessings to all of us fighting cancer!

    10 Answers from the Community

    10 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Wow, Kathykwaz, I am in a similar situation only because I have cancer. It is so unfortunate that you have been put through so much. Wow. I am glad they have come up with a diagnosis and that there's a plan.

      I wondered why they are waiting so long to do the hysterectomy. Isn't that about 6 weeks away? Do you feel confident that they now have the correct diagnosis? I sure am glad that your first doctor(s) were so astute that they didn't treat you for a cancer you don't have. As upsetting as it must have been to go from one diagnosis to another, that's preferable to being treated for something you don't have!

      Please know that we're here for you. I hope some others with your exact diagnosis will chime in.

      3 months ago
    • Kathykwaz's Avatar
      Kathykwaz

      Thank you so much! Yes it has been a crazy month. I just got the diagnosis yesterday but to me it makes sense cause I've had ongoing female issues for years though nothing was ever detected. And I am so thankful that my docs have been so persistent. The reason they want to wait on the hysterectomy is I have to have a cyber knife treatment for the brain site the second week of August. And the gyn/oncologist wanted that done first and then a couple of weeks to recover/make sure there are no side effects though what I've heard is cyber knife is pretty easy. I just so want it all out of me and then a treatment plan set so I know what I'm dealing with but I guess there is still waiting to do. I am a type A personality so tough to not have a plan outlined and ready to go ASAP. Lol!

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I'm a type A personality, too!!! Thanks for explaining why you have to wait so long for the hysterectomy! I was wanting it gone ASAP, too :) :) It sounds like you have an awesome medical team!

      I have never had cyberknife, but I had a good friend who did. He had several brain tumors that they removed that way. It was quick and easy. He had no side effects at all from it and also had no complaints.

      I think (but I could be wrong) that they'll make you a mask that you'll have to wear while they do the "treatment." I had to have one of those when I had radiation to my neck. It is freaky at first when they snap you down to the table, but they do it to keep you from moving. You definitely only want those beams going where they are supposed to go and nowhere else!!!

      If you are at all claustrophobic, see if there's anything they can give you to make wearing the mask easier (if you even have to have one ... my friend did, but that doesn't necessarily mean you will) or make you calmer, I guess is what I really want to say. I started to freak out when they put it on me the very first time, but I talked to myself about how it was no big deal, I could breathe just fine and I could see out ... there was absolutely no reason to be concerned. I'll post a picture of the mask over on the Pinboard so you can see what I'm talking about.

      Good luck!!! It is all new and scary, for sure ... and frustrating for a Type A because so much of it is out of our control.

      3 months ago
    • Kathykwaz's Avatar
      Kathykwaz

      Yes I will have to wear "the mask". Lol. They gave me one to try on and yes at first you feel like omg I can't breathe. But I am hoping like you I can talk myself off the ledge. I am not a drug person so would really rather not have any sedatives or anything and it is literally 20 minutes. My mother has an acoustic neuroma which is a benign brain tumor and she actually had gamma knife like 7 years ago which was the precursor to cyber knife. For that they literally bolted a metal frame to her head with screws going into her skull. Yikes. I much prefer the mask and just have to keep telling myself it's better than bolts in your skull!

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @Kathykwaz ... totally better!!!! I can't imagine having to have screws in my head!!!!!

      I am with you regarding the drugs ...

      I tend to look at everything like it is an adventure and concentrate more on that aspect.

      That's cool that they already let you try on a mask :) I'm liking your clinic more and more!

      3 months ago
    • Kathykwaz's Avatar
      Kathykwaz

      Honestly the doctors have been fabulous and all work together and talk to each other. I am lucky in that I live in northern NJ which is in the NYC metro area so have access to great docs. I think it would be a lot harder to do all this in a more remote area. With the brain tumor I was taken to the NeuroScience Hospital which focuses only on neurology so felt totally comfortable knowing I was in the best possible hands.

      3 months ago
    • BoiseB's Avatar
      BoiseB

      Hi Cathy I am a 5 year survivor of Uterine sarcoma. I can sorta relate to you because my diagnosis was really weird. In 2010 I was diagnosed with stage IV esophageal cancer. When I found out I had uterine cancer, I was in the hospital because I had breathed a lot of plaster dust and also had a blood clot in my lung. While they were treating my clot I began to bleed from the vagina I thought it was due to my injuries in the accident but the Doc insisted on a CT-scan. The next day they told me that as soon as they had a room on the cancer floor I would be transfered there. I saw the gyn-oncologist that afternoon and the clot-busting drugs were stopped and I would have a hysterectomy three days later. When the gyn-oncologist got the pathology she gave me the report and a free hand drawing of what they were saying. It seems that I had both esophageal tumors and uterine sarcoma tumors the lymphnodes were infected but by which cancer would need further analysis the rest of the report was just Dr. for WTF. Three days later and I don't know how many pints of blood later I was sent back to the telemetry floor. As soon as my blood was balanced, my hospitaler released me to a rehab hospital to treat my back and neck injuries. In the meantime my oncologist and gyn-oncologist argued about treatment. So my case went to the tumor board whose conclusion was WTF. On Apr. 1, 2013 the Dr. said that there was a 99% chance that one or the other cancers would return within 18 months. So we would wait and see. I have been cancer free since for 5 years. On April 19th I fell and got another concussion. Did I mention I also had a concussion when I got cancer. Well since I got this second concussion my PCP has reversed the odds. My stats are 5% chance of dying of cancer 95% chance of dying from a fatal fall. :)
      I pray that in 5 years you can look back on this experiance and smile

      3 months ago
    • Kathykwaz's Avatar
      Kathykwaz

      Omg what a great story. Not that you had concussions and cancer but that all of these things were going on and here you are 5 years later. Thank you so much for posting it!! Really makes me feel positive and like this is beatable. It really is crazy, much like you, when there is a weird presentation no one knows what to do. My case was actually presented at tumor board this morning! I guess it is good to know that lots of people are thinking about us. Blessings to you and here is to many more years without this beast!

      3 months ago
    • Ivy's Avatar
      Ivy

      Hi Kathywaz,

      I've been treated for endometrioid uterine cancer, and I'm still going strong now six years after diagnosis. I, too, had to wait for 6 weeks before the hysterectomy surgery and waiting doesn't seem to have presented a noticeable problem. (However, it certainly made me worry more while I waited.) I then had chemotherapy and internal (brachytherapy) radiation. All in all, things have worked out well, but it was a rocky road.

      Sparta is right around the corner from me, so to speak. I don't know where you'll be treated, but there are a number of really good treatment centers in northern NJ. I was treated at Memorial Sloan Kettering in NYC and in Basking Ridge. There is a support group for people who have or have been treated for women's cancers that meets once a month at St. Clares Hospital in Denville. You may want to consider becoming a part of it. I stay on their email list but haven't attended regularly lately. I did find it helpful in that it put things in perspective. It's always good to see how others are dealing with similar problems. Through this group I learned about other support that was local, too. Please feel free to contact any of us with questions or with worries. People on this site have endured diagnosis and treatments. They're generous with their time, and we're all on your side.

      3 months ago
    • Kathykwaz's Avatar
      Kathykwaz

      Thank you so much Ivy. It is so empowering to hear all of these fabulous stories and I am now refusing to look at Dr Google as that just terrifies me more. I think once I have the surgery and we have a plan I will feel much better regardless of what the plan is. I am actually being treated through the Atlantic Health System. I had my brain surgery at the Overlook Neuroscience Center. My docs have been wonderful through all of it and pursued many avenues when things did not seem right and I am so glad otherwise I would be in treatment for a cancer I didn't have as it was originally diagnosed as lymphoma. I had a friend who was treated for breast cancer at Sloan and she loved the care she got there and she went to the Basking Ridge facility for her radiation. I feel fortunate we are in a major metro area and have so many options and feel for women who may be in more remote areas and have to travel far for good treatments. I definitely am one who likes support groups and Atlantic Health actually has one right down the street from my office so I will definitely be checking that out. Thanks again for your input!! It is so appreciated!

      3 months ago

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