Lots of new ladies - let's have a roll call

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. 

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: 

http://genefacts.org/index.php?option=com_content&view=article&id=492:management&catid=113:lynch-syndrome&Itemid=665 

Pat

 

 

 

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.

 

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.

 

Oh Sue,

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)))

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, Sue

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

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 2016

This 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).

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.  

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.

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.