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I know too much!

kahea's picture
kahea
Posts: 6
Joined: May 2018

I had surgery a radical hysterectomy with bilateral salpingectomy on June 7th.  The surgery went great!  I'm recovering well, actually, better than I thought I would be.  I don't see my gyn/onc until June 22nd however I have had access to my pathology report since June 8th.  I am a nurse so I understand what my pathology report says.  I have stage iiic2 carcinosarcoma.  My uterus was so large that they had to cut it into four pieces to pull it out.  The entire endometrium (inside lining of the uterus) with almost full thickness of the myometrium (muscle layer of the uterus).  There was extensive lymphovascular involvement with several para-aortic and pelvic lymph nodes positive for metastatic adenocarcinoma.  This is a rare and fairly aggressive tumor.  The survival rates are abysmal so we have decided not to worry about statistics.  I am now just waiting to see my doc.  I know that she has been taking this time researching, consulting, and coming up with the very best treatment plan she can however, I have been sitting here knowing how bad this is and I am going crazy.  I have also sent my pathology to my PCP who is also a friend and colleague and he has come to the same conclusion that I have so I know that I am not just seeing only bad.  The waitig game is torturous.  

CheeseQueen57's picture
CheeseQueen57
Posts: 811
Joined: Feb 2016

I made the mistake of reading my pre-surgery CT scan before I saw my doctor and like you I worked in the medical field and knew just enough to be dangerous. I vowed after that to wait to get any results from my doctor. You’ll find there are a few women with similar dx as you. I myself was dx with stage 3c adenocarcinoma, grade 3 in April 2016. Try to take a deep breatH and continue to heal from your surgery. Many of us had the standard taxol/carboplatain Chemo. I had it every week but many had it every 3 weeks. Most had ports. After that many of us had 28 sessions of external pelvic radiation and 3 sessions of internal radiation. Of course your therapy may vary but this is the standard therapy. Good luck and let us know what happens. 

kahea's picture
kahea
Posts: 6
Joined: May 2018

Cheesequeen57,

Thank you so much!  I sm definitely feeling ok about all of this I just feel like I am sitting here doing nothing when I want to be out fighting.  I realize I won't fight well if I am not strong enough but I feel like sitting here twiddling my thumbs is not helping either.  I will try to breathe and recover because the nurse in me knows how important it is to heal properly and completely yet the person in me wants to fight this thing.  Thank you again for your advice.

skshello
Posts: 13
Joined: Jun 2018

My complete hysterectomy was 5/30/18 ...and I am healing well.   Tomorrow I meet with the chemo dr and the radiation dr...what I day that will be ....  I was told at first that there would be 4 chemo sessions, and then I would go back to him and get a cat scan again...and then they called me for the radiation appt.....it is really difficult for someone who has totally avoided drs and hospitals all these many years ...I do natural healing things ... but it appears that I have no real choice except to allow them to poison me ....  I try not to think about it much ...   I certainly appreciate reading all your comments, it means that there are survivors out there....

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

kahea, if something is wrong you are working with a gynecologic oncologist - which is the best.  This is all a one-step-at-a-time process, and that includes dx.  Take a breath, rest, get yourself strong, and please know the ladies are here to listen and help if you find out it is something serious.  As a dear lady said, "You are a statistic of one", so I suggest staying away from the internet.  

cmb's picture
cmb
Posts: 374
Joined: Jan 2018

I was diagnosed with uterine carcinosarcoma (MMMT) cancer, Stage IIIB in November, 2016. I had surgery, chemotherapy and radiation in 2017, finishing last September. My post-treatment CT scans, including the one I just had on Friday (6/15/2018), have been clear for cancer.

For chemotherapy, I started with 4 cycles of Paclitaxel/Carboplatin, which was followed by 4 cycles of lfex/Mesna/Adriamycin (aka Ifosfamide/Mensa/ Doxorubicin). The change in drugs for "phase 2" was not due to any allergic reactions to the first set of drugs.

My medical oncologist planned to use both sets of drugs from the beginning, targeting first the carcinoma and then the sarcoma elements of this cancer. I don't know whether this dual approach will prove to be any more successful than the usual treatment of 6 cycles of Paclitaxel/Carboplatin, but I'm happy that a year and a half after diagnosis I still feel good, with the only noticeable side effect being some slight neuropathy in the balls of my feet.

Other ladies with this cancer have survived longer than me, so while I know that it can be hard to discount the published studies of survivorship, I try to remain positive. I hope that you can too.

pattiann45
Posts: 22
Joined: Sep 2010

Hi Kahea,

I am a NP so I totally understand.  I have also read all of my pathology reports, histology, and even look at my own Ct scans.  I am overly involved in my care, and to honest, it is both good and bad.

In some ways good because I when I was diagnosed (Stage 2, grade 2 EC) they wanted to give me standard of care treatment, and I fought for (if you can beleive fighting for chemo) four cycles of carbo/taxol, which they agreed to. I am always way ahead in terms of new research for EC, in fact, I have spent the past year researching so many things about it.  I also have done some things which I believe are benefit to me, for example, I order my own Ca-125 because they don't, I also convince them to do scans for any unusal symptom.

How it is bad?  It can be so hard, because it is true: you know too much.  I have viewed some stats for stage 2 that make me lose my breath.  I have had many occasions (or scares) like a bowel obstruction, that I has to as I refer to (trying to talk myself off the edge).  For other people, a bowel obstruction, you know, they are just waiting to see what the docs say.  For me, I was sure that it was really bad.

You know, you are stage 3 but the treatments are pretty fantastic.  You are not a statistic.  You have got this, and you will survive.  There are many here and in other forums with stage 3c who been CURED.  Focus only on being CURED.  Use your medical knowledge for good.

Prayers and positive thoughts to you.  I completely understand.

 

Armywife's picture
Armywife
Posts: 313
Joined: Feb 2018

I, too, saw my path report almost two weeks before my surgery followup appointment.  I was told going into surgery that based on my biopsy, I had stage IA, grade 1 endometriod endometrial adenocarcinoma.  My path report said Stage IIIA, both sentinel nodes clear, cervix, ovaries, tubes clear, lymphvascular invasion and two fragments in the cul-de-sac.  I went for a second opinion at MD Anderson and they read the same pathology slides as Stage IVB, Grade 2, and found mets on the outside of my uterus and in one of the tubes. I had no idea two different labs could come up with such different results.  And yes, the statistics are abysmal but I've got a really healthy case of denial going on, so I'm able to deal with the stress.   I was scheduled for six rounds of carbo/taxol and then both kinds of radiation.  I had a terrible reaction to the taxol, so my second chemo was carbo only, and the last four were carbo/taxotere.  My scan to prep for radiation was clear, and we decided not to do radiation, as the preventive dose would probably not have done any good and there was no visible target for a treatment dose.  I'm thankful in retrospect because I have since been diagnosed with significant osteoporosis and the radiation may have exacerbated that.  I finished treatment 9 months ago and my every-12-week physical exams have been good.  I have asked for a scan in October when I reach the one-year mark.  Doctor says they normally don't scan unless there are symptoms, but is willing to do it.  There is hope for you!  

 

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