From Uterine Carcinomasarcoma Poster Girl to Metasticized Uterine Carcinomasarco
March 8, 2019 at 8:18 PM #8280
My name is Charmaine and I’m new to this forum. I don’t usually take to forums, but I feel it is time for me to connect with other women battling this disease. Only recently, have I begun to even link the reoccurrence of this cancer to my public life. My intention is to spread the word so that other women will not put off possible signs and become more proactive in diagnosis.
For the record, I remain a part-time journalist/photographer. Because of my communication skills, I became the poster girl for gynecologic oncology awareness/fundraiser in my local region last April, four months after my diagnosis and hysterectomy.
I thought we had this thing in control. Tumor gone, some brachytherapy as a proactive measure, and life was back to normal. Or so I believed. By September, I started spotting again. Impossible. The PET scan showed five tumors in the pelvic region and suspicious nodules in my lungs.
After a failure to communicate with the local oncologist (my gyn/onc was on medical leave), I crash landed at the Mayo Clinic in Phoenix. The graphic detail is disgusting and long, so the short of it is one tumor took exponential growth and invaded my upper bowel, my hemoglobin was at .5, and so on. The poster girl for gynecologic cancer was in the red zone.
I’m being treated at the Mayo Clinic by a team of specialists to include a sarcoma specialist, a gyn/onc, an internist, and gastrointestinal specialist. I completed 6 rounds of protocol chemo two weeks ago today. In another week or so I’ll have new scans and rounds of blood studies. My specimens are in research. An immunotherapy clinical trial is hopefully in the works.
This is not the journey I planned as an active 70-year-old woman.
My husband and I feel like we’re floating in a world of unknowns. A billion questions. A leap of faith. Occasional nightmares. And the nagging wonder if it was the tamoxifen I took for breast cancer in 2004.
March 13, 2019 at 4:47 PM #8314Lisa MyersParticipant
Wow Charmaine! You have been through the wringer! I am so sorry to hear about all you’re going through. I was diagnosed stage 3 in January and have had 2 of 6 rounds of chemo so far. I am so grateful for these forums so that we can share our experiences with those who are dealing with the same disease.
I too took Tamoxifen for 6 years. My oncologist says my pulmonary embolisms and this cardinosarcoma were caused by the Tamoxifen. I got so angry. I wanted to have a hysterectomy 6 years ago but was told it wasn’t necessary. Today, a hysterectomy is standard procedure for estrogen positive breast cancer.
I wish you well in your upcoming scans. This cancer is so scary. I know how you feel. It’s like a ticking time bomb. Please keep us updated here. There has not been a lot of communication on these forums lately, but recently you and another woman have started a thread. And there is another woman who checks these forums weekly. It’s good to have a place to talk to each other.
March 25, 2019 at 8:44 AM #8434annParticipant
Charmaine, I am so sorry to hear about your issues! I am glad you are sharing your experience on this forum – we can all learn from each other. I hope that the immunotherapy will work! Thank you for sharing your specimens for research!
April 3, 2019 at 12:17 PM #8498denneParticipant
so sorry to hear your story. the one thing we know on this site is that this cancer surely sucks but we can all least give advice and support!!
I can sympathize with you as I was also planning to schedule a hysterectomy in the fall 2017 but was instead diagnosed with GCS in August! This was 2 years after breast cancer. I did not take tamoxifen as I was post menopausal but I know there is a found relationship with tamoxifen and GCS. I have not counted but it seems that a disproportionate amount of women on this site have had a hx of breast cancer.
I also expected to survive as was stage 1 B but it returned in the lungs 6 months later. the good news is that iphosomide has almost shrunk these tumors to nothing! So I’ve decided to live to the fullest… bald and with a sense of humor I will continue this chemo every 3 weeks… until it doesn’t work anymore. I never know though when emotions will boil over unexpectedly and I’m sure you feel this pain! How did this happen with such a rare cancer?
You were not put on chemo after the surgery? I’m thinking that you must have had a stage 1 A? And you just finished carboplatin then? Keep hope… carbo did not work for me but the Ifos did! And hang in there!
were you an carboplatin?
April 27, 2019 at 8:08 PM #8779
I’d like to thank each of you for responding to my post.
I appreciate Denne’s thought to live life to the fullest, bald and with a sense of humor. Yes, there doesn’t seem to much choice but to carry on. Carboplatin and Paclitaxel were my oncologist’s drugs of choice for me. Two of the tumors have reduced in size by over 30%. Now I wait for the next step. We missed one program available. So I await for a match with my genetics to another drug to keep the battle on.
Lisa has said it perfectly, I feel like a ticking time bomb.
At this point in time I’m trying to educate others about this cancer. With my journalism background, I’m inclined to write and informally educate. So I blogged “War! My Battle with Uterine Carcinosarcoma.” https://charmainecoimbra.com/2019/04/03/war-my-battle-with-uterine-carcinosarcoma/
I learned from that post that most of my women friends have never heard of this cancer. Mission accomplished. It helped me feel better.
I mentioned this website. And a few friends donated to cancer research at Mayo Clinic.
This is all fine, but there is so much more for me to understand in this literal change of life.
Meanwhile, I booked a pricey river cruise — something I would’ve never have done prior to this. Yes, taking life to the fullest and fighting to keep kicking the can down the road.
April 29, 2019 at 7:19 PM #8819KathyKeymaster
Thank you, Charmaine, for sharing the link to your blog. Your eloquence and spirit are inspiring and remind me so much of my dear friend, Diane. I wish you had met her. Diane and many of the other women on our forum say that attitude accounts for so much. I heartily agree.
And thank you to all who are sharing on the forum.
May 10, 2019 at 12:04 AM #9061denneParticipant
Sorry so long back to you. I find that I think about all the people on this site just about every day but i don’t always communicate. Hard to say why, but having this disease has made me step back a little. OK, a lot! Cancer is, of course, a disease but how does this happen when one in the top of their form? How many times do friends check in but hope to hear that everything is fine? Who can one relate with if it isn’t someone who suffers like us with the uncertainty and fear of cancer?
I think I may be trying to say ( after a couple glasses of wine!!) that I would like to hear how people on this site are doing!! Many of us are not curable.. that doesn’t mean that we don’t still live! Let’s feel free to communicate when we can. There is life here, ups and downs and this site may help us to see that!
Charmaine, I love your blog! Thanks for putting this out there! And do this cruise!!! One thing that is so important is living life in the present… wow who does that!! A positive thing about cancer is choosing to live the life that you were putting off and may never have gotten to.
And do you remember when cancer was a word that could never be spoken out loud? I think that would kill me!!!!
I am so glad that you are responding to treatment. I did not respond to carboplatin and had been hoping for a cure at stg 1B. That did not happen…devostating… but did respond to ifosmamide. And there is the possibility of avastin/cytoxin. There is hope here.
To close… I recently bought e bikes (electric bikes) to assist me going up hills in colorado. I feel amazing on them!! For however long it lasts… thank the heavens for this gift.
Please keep in touch.
May 10, 2019 at 6:12 AM #9088Lisa MyersParticipant
You go for that trip!! Enjoy life every day! I’ve been finding myself worrying all the time and being afraid to make plans for the future. I am so fortunate to have a husband who is doing the planning for me and being my rock.
Ladies, I like Linda, think about you each and every day and pray that you are all well. Yesterday, I found an MMMT support group page on Facebook. It is very uplifting with many survivors. The shot in the arm I needed. Let’s keep supporting and uplifting each other!
May 11, 2019 at 5:50 PM #9112
Wow. I don’t think I can aptly describe the gratitude that I feel from this support and knowing that there are other women who feel “like a ticking time bomb,” but have the will to move forward and make life worthy.
Last week I was able to educate a group of women about GCS, and I gave each of them a peach lapel pin. Just about all of the women there, all over the age of 60, said that they had never heard of GCS or the risk of any of the gyn cancers. Breast cancer (of which many, like myself, have survived) has been their focus.
I shared with them what I felt was one of my most important, albeit too late, experiences, to continue with their gyn exams even if their primary doctor says, “You don’t really need those any longer.” BS!!! If I had a gyn exam 3-4 years ago, I wouldn’t be on this page — maybe.
My wish is to continue to educate. Meanwhile, life has radically changed and I must move closer to where I can receive proper and knowledgeable treatment and be closer to my immediate family and let go of that bank book to take those crazy road adventures I so heathenry crave. LOL
Enough of me! I’m thrilled to meet other women in this circumstance (not that I want you in this circumstance — but here we are). Thank you.
May we all be blessed with science, dedicated researchers, hope, and love.
May 15, 2019 at 8:47 AM #9175annParticipant
Thank you for your continued sharing of this cancer! The more people know the more likely the studies will be expanded and strengthened! It is encouraging to me that we have each other!!! Sharng our experiences is a blessing to me.
I will say that having this cancer has made me live more life more fully!! I went to Alaska last summer – something I had always wanted to do! I have been to see friends around the south to whom I had promised for years to come see! I have made it a goal to encourage others going through cancer treatments!
Have a great day!
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