Lots of new ladies - let's have a roll call
We have a lot of new ladies on the board. I think it's time for a new roll call to introduce ourselves all in one place.
Please tell us what type of uterine cancer you have and when you were diagnosed; where you are in treatment and what that treatment is; where you're from and your age (if you like) and anything else you want to say.
I'm Eldri, 64 years old from Green Bay, WI. I was diagnosed in September of 2015 with Stage II, Grade 3 UPSC. I had a complete hysterectomy on 9-30-15 and my oncologist thought he got it all. However, because it was UPSC, he recommended 6 chemo (Carboplatin and Taxotere). I made it through three chemos, the last one a year ago, before I stopped because of the severe side effects. My doctor did not recommend radiation. I am currently on 1500 mg of Metformin for T2 diabetes but also to see if it stops the cancer from spreading.
I am currently NED (No Evidence of Disease) but have an appointment for my three month checkup the end of this month so.......
My neuropathy is getting better, my stomach issues about the same, but the fatigue is still there.
Love,
Eldri
Comments
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Roll Call
I'm Susan. I was diagnosed with Stage IIIc, Grade 3 uterine carcinoma after a total ab hysterectomy on St Patrick's Day 2016. I live just outside Philadelphia.
I completed 14 weeks of a planned 18 weeks of taxol/carbo and I had to stop because I suffered a mild stroke. I completed 28 days of external radiation and 3 session of internal radiation. I completed my frontline therapy in October 2016. My next CT scan is in February.
I continue to have swelling of my optic nerves in both eyes since August. We're not really sure the cause but we don't think it's cancer related. I still have some neuropathy in my toes and quite a bit of fatigue. I'm anxious for my hair to grow back. Trying to get my life back.
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My CSN Space
These periodic roll calls are real helpful, but then you always have to come back to find this thread when you can't remember these particulars as time goes on. I'd like to propose that people try to find the time to put this same information in their "My CSN Space" so we can click on screen names for the info we want to recall in whatever thread were currently reading.
But in the spirit of not being a party pooper, here's my stats:
I'm Pat, 59 years old, living outside of Buffalo, NY.
My PCP sent me for a biopsy in late March because I still hadn't gone into menopause and the results showed a grade 3 cancer. They weren't sure if it was cervical or endometrial or possibly even both. The oncologist staged me as a I or a II in his office, but that was his preliminary guess or him just breaking the news to me slowly. Every time I saw him, it seemed like things were always worse than originally thought.
I had a radical abdominal hysterectomy, BOS, sentinel pelvic & para-aortic lymph node dissections, omenectomy, and pelvic wash on my eldest's birthday in April (note the irony of that!). It took over a month and 3 different labs to pin down the results, but I ended up with Stage 3a (since changed to 3c), grade 3 endometrial adenocarcinoma. They decided that instead of 2 cancers that mine originated in the neck of the uterus and grew down to the cervix and also up into the fundus. Instead of 30% myometrial invasion as originally thought, it was changed to 70% because the uterus is thinner at the neck than in the fundus. It's an important distinction because it impacts treatment, particularly the need for radiation in addition to chemo. I had one positive pelvic lymph node on each side that I was originally told is read as being negative (why I was 3a for a while) but then minds changed and I was upped to stage 3c. My para-aortic lymph nodes and omentum were negative. My pelvic wash was inconclusive. One ovary and the opposite fallopian tube were involved although the fallopian tube may have been contaminated during dissection.
I started 6 cycles of Taxol/Carboplatin on May 18 and finished on August 31st. The Taxol got switched to Taxotere starting with the 2nd cycle because I developed intensely (unbearable!) peripheral neuropathy from the Taxol. I also started getting B12 shots monthly to help with the neuropathy and used hpyothermia mittens and slippers during and between infusions. I had more issues with heartburn than nausea and so used Pepcid AC to deal with that. Constipation was an issue for which I took Miralax 2x/day and Senekot-S as needed.
I had a negative PET scan Sept. 19.
I had a 2nd surgery to repeat the pelvic wash at the end of September. Positive results meant that I wouldn't need to go through radiation therapy because that would no longer be able to cure me and negative results meant that my oncologist was going to advocate for me having radiation therapy. The results were negative.
I tried very hard to find a reason to refuse radiation therapy, but I really had all of the factors that made it something I had to reconcile myself to: Stage & grade, location of origin, lymphvascular involvement, greater than 50% myometrial invasion. I've had 25 rounds of pelvic radiation (3D-CRT) with 5 rounds of a "boost" to the vaginal cuff area that I complete tomorrow (ding! ding! ding!) It's been easier than chemo physically, but harder mentally to get through this. It just felt like I might already be cured by the chemo and have just been destroying healthy cells. It was really hard to submit to this, but I'm not sure I could rest easy without having done all that I could to fight this monster. If I learned anything through all of this, its that what I do in my normal life matters a lot to my family, so I did it for them. I'm kind of still hoping it wasn't a mistake.
I have a follow-up with my gyn onc in a few weeks when I will find out if I'm still going on hormone therapy for the rest of my life, then it's check-ups every three months. I'm really hoping the side effects from the radiation don't last too long so that I can start taking some trips to see my dad before he dies (92 and possibly has bladder cancer) and my kids on the east coast. There's so much on my plate that's been put on hold during treatment that I'm going to focus on that to keep thoughts of recurrance from worrying me. We'll see how that goes.
I recently got some genetic testing results back. Insurance would only cover testing for the BRCA 1 & 2 genetic mutations (I'm negative) and for Lynch Syndrome (I'm positive!). Lynch Syndrome puts you at higher risk for a number of cancers, but especially colo-rectal and endometrial. It probably means a slew of annual screen tests are in my future and that my kids and grandkids need to be tested, too. If any of you are interested in learning more about how a Lynch Syndrome finding is managed here's a good link:
Pat
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Hi Im Janae. I was diagnosed
Hi Im Janae. I was diagnosed with Carsisarcoma Uterine cancer Stage 2 grade 3 back in May 2016. I have finished chemotherapy and bracytherapy on Nov. 3rd. I currently still have nuropathy in my fingers and toes and still have joint pain in my legs. I live with it and can now work a part time job. I dont think i have ever mentioned this but i am from UT and am 44 years old. This is my second cancer. I had Hodgkins Lymphoma about 24 years ago.
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Welcome, Linda!! I'm sorrylyn347 said:Roll Call
I'm Linda. 68 years old. Diagnosed with uterine carcinosarcoma. My gyn has referred me to a gyn/oncol. I see him Tuesday. Just bowled over by all this. survived breast ca 37 years ago .
Welcome, Linda!! I'm sorry to hear about this second cancer. Please keep us updated on your treatment. If you have any questions, this group of ladies is pretty much up on the latest treatment - honestly, some of them could get a PhD in cancer.
Love,
Eldri
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It is starting to be a long story
Hi, I am Lou Ann, i will be 70 in a few weeks and am from Whitehall, Mt.
i was diagnosed in Aug, 2012 with Serous Pappillary Endomedrial Andocarcinoma.
Treatment plan: Radical hysterictomy, sandwich treatment (3 Taxol/carbo, 28 external radiation, 2 brachytheryep, 3 more Taxol/ carbo). NED for 7 months, PET scan showed mets to neck, liver and several,others in abdoman. 5 more rounds of Taxol/ carbo. Stopped because blood counts were not recovering and CA125 was and 6 plus CT scan showed NED. My oncologist gave me a chemo vacation, after 4 months CT scan showed mets had returned to various places including between my intestines. Back to Taxol/Carbo. Had a reaction to the Carbo on rounds 3&4. Tried Taxol by itself for two more rounds. That didn't work. Tried Doxil. Bad side effects and it let large tumor Intwine between my intestine.. Open Bowel resection. 2 rounds of Topoteca, that did nothing. Went back to Taxol/Carbo with a desensitizing program, that worked for 7 rounds when I had another reaction to the Carbo. Tried Avastin, my genomic match, it was working, but caused a heart attack. After 8 weeks rest my oncologist helps me apply for compassionate use of a Immunotherapy drug, Keytruda. I had round 8 of the Keytruda toda. It has very few side effects and seems to be working. I am very hopeful.
It is getting to be a long story, but it does mean that I am still here and this roller coaster has not thrown me off yet. There is always hope.
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Hi, I am Sue from Willowick,
Hi, I am Sue from Willowick, Ohio just outside of Cleveland. I am 75 years young. I go to the Cleveland Clinic. I was diagnosed with MMMT uterine cancer stage 2 grade 3 June of 2014 and had 5 chemo treatments of taxol/carbo after a full hysterectomy. I also had 3 brachytherapy treatments and have been NED since Oct. 2014. I just today I found out that a lymph node above my ear that I had biopsyed last week came back showing breast cancer from 2012. I also have nodules in my lungs that have not been biopsyed yet. They do think it might be from the breast cancer also. I will know soon.
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Congrats on finishing treatment!!!!!MAbound said:My CSN Space
These periodic roll calls are real helpful, but then you always have to come back to find this thread when you can't remember these particulars as time goes on. I'd like to propose that people try to find the time to put this same information in their "My CSN Space" so we can click on screen names for the info we want to recall in whatever thread were currently reading.
But in the spirit of not being a party pooper, here's my stats:
I'm Pat, 59 years old, living outside of Buffalo, NY.
My PCP sent me for a biopsy in late March because I still hadn't gone into menopause and the results showed a grade 3 cancer. They weren't sure if it was cervical or endometrial or possibly even both. The oncologist staged me as a I or a II in his office, but that was his preliminary guess or him just breaking the news to me slowly. Every time I saw him, it seemed like things were always worse than originally thought.
I had a radical abdominal hysterectomy, BOS, sentinel pelvic & para-aortic lymph node dissections, omenectomy, and pelvic wash on my eldest's birthday in April (note the irony of that!). It took over a month and 3 different labs to pin down the results, but I ended up with Stage 3a (since changed to 3c), grade 3 endometrial adenocarcinoma. They decided that instead of 2 cancers that mine originated in the neck of the uterus and grew down to the cervix and also up into the fundus. Instead of 30% myometrial invasion as originally thought, it was changed to 70% because the uterus is thinner at the neck than in the fundus. It's an important distinction because it impacts treatment, particularly the need for radiation in addition to chemo. I had one positive pelvic lymph node on each side that I was originally told is read as being negative (why I was 3a for a while) but then minds changed and I was upped to stage 3c. My para-aortic lymph nodes and omentum were negative. My pelvic wash was inconclusive. One ovary and the opposite fallopian tube were involved although the fallopian tube may have been contaminated during dissection.
I started 6 cycles of Taxol/Carboplatin on May 18 and finished on August 31st. The Taxol got switched to Taxotere starting with the 2nd cycle because I developed intensely (unbearable!) peripheral neuropathy from the Taxol. I also started getting B12 shots monthly to help with the neuropathy and used hpyothermia mittens and slippers during and between infusions. I had more issues with heartburn than nausea and so used Pepcid AC to deal with that. Constipation was an issue for which I took Miralax 2x/day and Senekot-S as needed.
I had a negative PET scan Sept. 19.
I had a 2nd surgery to repeat the pelvic wash at the end of September. Positive results meant that I wouldn't need to go through radiation therapy because that would no longer be able to cure me and negative results meant that my oncologist was going to advocate for me having radiation therapy. The results were negative.
I tried very hard to find a reason to refuse radiation therapy, but I really had all of the factors that made it something I had to reconcile myself to: Stage & grade, location of origin, lymphvascular involvement, greater than 50% myometrial invasion. I've had 25 rounds of pelvic radiation (3D-CRT) with 5 rounds of a "boost" to the vaginal cuff area that I complete tomorrow (ding! ding! ding!) It's been easier than chemo physically, but harder mentally to get through this. It just felt like I might already be cured by the chemo and have just been destroying healthy cells. It was really hard to submit to this, but I'm not sure I could rest easy without having done all that I could to fight this monster. If I learned anything through all of this, its that what I do in my normal life matters a lot to my family, so I did it for them. I'm kind of still hoping it wasn't a mistake.
I have a follow-up with my gyn onc in a few weeks when I will find out if I'm still going on hormone therapy for the rest of my life, then it's check-ups every three months. I'm really hoping the side effects from the radiation don't last too long so that I can start taking some trips to see my dad before he dies (92 and possibly has bladder cancer) and my kids on the east coast. There's so much on my plate that's been put on hold during treatment that I'm going to focus on that to keep thoughts of recurrance from worrying me. We'll see how that goes.
I recently got some genetic testing results back. Insurance would only cover testing for the BRCA 1 & 2 genetic mutations (I'm negative) and for Lynch Syndrome (I'm positive!). Lynch Syndrome puts you at higher risk for a number of cancers, but especially colo-rectal and endometrial. It probably means a slew of annual screen tests are in my future and that my kids and grandkids need to be tested, too. If any of you are interested in learning more about how a Lynch Syndrome finding is managed here's a good link:
Pat
We'll be thinking of you tomorrow!!!! YAY!!!!!! I'm sorry that it's been so difficult and so glad you will be done before the holiday.
Sorry to hear about your dad!!! I hope you get to go see him soon. (((HUGS)))
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Oh Sue,namedropper said:Hi, I am Sue from Willowick,
Hi, I am Sue from Willowick, Ohio just outside of Cleveland. I am 75 years young. I go to the Cleveland Clinic. I was diagnosed with MMMT uterine cancer stage 2 grade 3 June of 2014 and had 5 chemo treatments of taxol/carbo after a full hysterectomy. I also had 3 brachytherapy treatments and have been NED since Oct. 2014. I just today I found out that a lymph node above my ear that I had biopsyed last week came back showing breast cancer from 2012. I also have nodules in my lungs that have not been biopsyed yet. They do think it might be from the breast cancer also. I will know soon.
So sorry to hear that biopsy result
This stuff is like fly paper- just keeps sticking around! Keep us posted. We're here for you (((HUGS)))0 -
dx April 4, 2016
- April 28, 2016 da Vinci robotic assisted surgery- Radical Hysterectomy & Bilateral Salpingo-Oophorectomy
- Endometrial Adenocarcinoma Stage 3A grade 3
- June 3- Sept. 21, 2016 Chemo Carboplatin/Taxol (6 rounds) declined rad
- 1st followup after front line Oct 19- NED
- Still some neuropathy in my feet- some days worse than others. Struggling with ongoing fatigue and swelling. Had a recent TV ultra sound to rule out anything in abdomen- whew- nothing- still swelling, pain, bloating etc. they are thinking it's related to lymph? Working on it with IV therapy, supplements, massage and hyperbaric oxygen chamber.
- Have 2nd followup appt. with gyn/onc Dec. 21. No CA-125 to follow and she doesn't do scans unless there is a problem. Hope to continue NED
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So sorry, Suenamedropper said:Hi, I am Sue from Willowick,
Hi, I am Sue from Willowick, Ohio just outside of Cleveland. I am 75 years young. I go to the Cleveland Clinic. I was diagnosed with MMMT uterine cancer stage 2 grade 3 June of 2014 and had 5 chemo treatments of taxol/carbo after a full hysterectomy. I also had 3 brachytherapy treatments and have been NED since Oct. 2014. I just today I found out that a lymph node above my ear that I had biopsyed last week came back showing breast cancer from 2012. I also have nodules in my lungs that have not been biopsyed yet. They do think it might be from the breast cancer also. I will know soon.
It is so hard to understand that something can return after that long. It seems like once it grabs you it just doesn't let go and you can't get away from it. Sending hugs and prayer for you, Lou Ann
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I'm sorry, Sue! This is thenamedropper said:Hi, I am Sue from Willowick,
Hi, I am Sue from Willowick, Ohio just outside of Cleveland. I am 75 years young. I go to the Cleveland Clinic. I was diagnosed with MMMT uterine cancer stage 2 grade 3 June of 2014 and had 5 chemo treatments of taxol/carbo after a full hysterectomy. I also had 3 brachytherapy treatments and have been NED since Oct. 2014. I just today I found out that a lymph node above my ear that I had biopsyed last week came back showing breast cancer from 2012. I also have nodules in my lungs that have not been biopsyed yet. They do think it might be from the breast cancer also. I will know soon.
I'm sorry, Sue! This is the pits - you make it through uterine cancer only to have the breast cancer come back. This stuff is sneaky and unrelenting - I hate it!!
Love,
Eldri
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Roll Call
I'm Kim, 48 years old from Tampa, Florida. My diagnosis was uterine carcinosarcoma (MMMT) Stage 1b, Grade 3.
Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - completed May 2016; Radiation - external, 28 treatments, sandwiched between chemo #3 and 4 - completed Mar 2016
NED: June 2016This was my second primary cancer diagnosis. The first was malignant melanoma in situ on my right upper arm. The only treatment was surgery (3.5 in x 1.8 in x 0.5 cm excision) and observation.
My next CT scan is this Thursday (12/8/16) and I'll be getting the results of my genetic testing this Wednesday (12/7/16).
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So sorry you are having to gonamedropper said:Hi, I am Sue from Willowick,
Hi, I am Sue from Willowick, Ohio just outside of Cleveland. I am 75 years young. I go to the Cleveland Clinic. I was diagnosed with MMMT uterine cancer stage 2 grade 3 June of 2014 and had 5 chemo treatments of taxol/carbo after a full hysterectomy. I also had 3 brachytherapy treatments and have been NED since Oct. 2014. I just today I found out that a lymph node above my ear that I had biopsyed last week came back showing breast cancer from 2012. I also have nodules in my lungs that have not been biopsyed yet. They do think it might be from the breast cancer also. I will know soon.
So sorry you are having to go through this Sue. I too have both Breast (IDC Stage II) and Uterine (USPC). Hope you get answers and a plan soon!
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Diagnosed with invasive
Diagnosed with invasive ductal carcinoma (Stage II) two days before my 50th birthday last year (May 2015). Had a unilateral mastectomy of my left breast and imediate reconstruction (tissue expander). Expander failed (long horrible story) and was removed in Aug. 2015. Thought I was going to get a break from cancer when I was diagnosed with USPC at the end of Sept. 2015. DaVinci robotic assisted surgery- Radical Hysterectomy & Bilateral Salpingo-Oophorectomy, removal of 27 lymph node, and biopsy of omentum on Oct 8, 2015. Pathology revealed Grade 3 Stage IIIC1 USPC. Frontline treatment included 6 cycles of Carboplatin and Taxol. 28 external HIT radation treatments. CT in May and a repeat in Aug both show NED.
Just had a routine colonoscopy and 2 polps were found (transverse colon - sessile serrate polyp and sigmoid colon - tubular adenoma with high grade grandular dysplasia). Both are precancerous so I will be getting more frequent (every 3 years) colonoscopies to hopefully avoid adding colon cancer as a third cancer.
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Hi! I'm Kathy and I live just
Hi! I'm Kathy and I live just outside Peoria, Illinois. A d anc in August of 2015 showed encometrial clear cell cancer. After a DeVinci hysterectomy I was stage 111C grade 3/4. Cancer in two lymph nodes and a positive pelvic wash. I then had 5 weeks of external radiation and 3 internal radiation. Next 6 rounds of carbo taxol chemo. I finished front line end of June and after my ct scan in August I am NED:) I now see the gnocologist oncologist every 3 months and may have another ct in 6 months. I am feeling pretty good but I do have lasting stomach issues from radiation though the effects seem a little better or I'm just getting used to it. I also still have neuropathy in my feet but it's not a huge problem. I have bad knee that will be replaced one of these days, but I may wait for Medicare which will be another year from-now. Oh and my husband was diagnosed with prostate cancer recently. Hormone treatments and radiation to begin in January.
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New to group
Hi Everyone,
I am new to the group. I had a full hysterectomy on Oct 31st. I had cancer in my uterus and one ovary. I will start chemo this coming Monday the 12th. Since finding out about my diagnosis, I have been very positive and trust in God. Looking for a support group to answer questions and uplift others as we go though this.
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My story
I'm Chris from Sacramento, California, 63 years old (for a few more days.) I was diagnosed with uterine carcinosarcoma in June of 2015. Big shock because I have none of the risk factors for uterine cancer except for never having had children and have always been very healthy.
Laparoscopic Hysterectomy 7/15 Staging post surgery: Stage IIIC2, Grade 3.
Chemo with carboplatin/taxol 8/28/15 - 12/11/15 every 3 weeks for 6 rounds
Second opinion 1/16 pathology couldn't confirm carcinosarcoma, and said serous carcinoma. Will go for the tiebreaker should I have a recurrence.
Brachytherapy 3 sessions from 2/10/16-2/24/16
First Post Treatment PET Scan 5/14/16 NED
Second Post Treatment PET Scan 10/11/16 2 very small suspicious areas. Unable to be biopsied or confirmed as malignant.
Currently working with a naturopathic oncologist with the full support of my gyn/onc. Have switched to a 99% organic diet, take a number of supplements as well as mistletoe extract injections and low-dose naltrexone. Follow up scan to be done in January 2017.
No lingering side effects from chemo with the exception of my WBC which has not yet returned to pre-chemo levels. But... I haven't even had a cold since the end of February, and I feel great! Energy levels back to pre-diagnosis levels.
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Originally from MassMAbound said:Hi
Hi Suepatsfan!
From the Boston, MA area? Sorry you needed to find us, but you are in a good place for what you are looking for. Did you get your pathology results yet? How have you been holding up since your surgery?
Hi MAbound,
I am originally from Mass, but have lived in southern Ca for the past 20 years. All my family stilL live in Mass. Regarding my pathology results, my doctor went over the results with my sister and me. (my sister flew out to help me after surgery). I strongly believe in God and that though the power of prayer and intervention, I will overcome this. Go Pats and Tom Terrific...on to another Super Bowl!
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