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EC grade 2 stage IIIc just diagnosed

Purplelady80
Posts: 4
Joined: Mar 2018

On Feb 20 I had my hysterectomy davinci style, they used the dye to map the sentinel nodes.  only the left side mapped, they only took the sentinel node on that side.  took all they could find on the right.  So the pathology report says the sentinal node has cancer and 3 of the other side although it is micro cells and the lymph nodes looked normal according to the doc.  I am to be treated with 3 rounds of chemo, 5 1/2 weeks of radiation then another 3 rounds of chemo.    they found the genetic mutation for lynch syndrome but I have no cancer in our family so I don't quite know what that means yet.  the Dr hasn't called me back.     Went to Dana Farber in Boston for second opinion and they agree with my Dr here in NH.  any others like mine further along in the process?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2484
Joined: Mar 2013

Purplelady80, I am sure you are overwhelmed with all this information and would suggest to take a breath.  You have found a good spot to come and ask questions.

You have already done things, like seeking a second opinion, that are things you would have probably heard, and here is a link to a lynch syndrome organization to learn more:  https://lynchcancers.com/

Many of us have had the treatment that is being recommended to you, it is often called the "sandwich" treatment.  I know the other wonderful ladies will be along to welcome you with open arms.

 

 

Soup52's picture
Soup52
Posts: 871
Joined: Jan 2016

Thank you Notime! Your links are the only ones I can ever read.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2484
Joined: Mar 2013

I am not a techie, but had to learn how to update our company intranet site, so all I do is apply the same principles I learned there.  If anyone wants to know - just PM me and I will send you info. 

LisaPizza's picture
LisaPizza
Posts: 168
Joined: Feb 2018

Very happy to meet you, although we wish no one needed this forum. But since we do, you'll find it's full of wonderful, caring and helpful women, just when we need it most. It's great you got a second opinion already, so you can feel confident. 

It sounds like you're stage 3c1. I was 3a (no lymph nodes, but it got into my left ovary somehow). I'm in the middle of similar treatment, except not "sandwich" style. I just had my last (6th) chemo Tuesday, and start the radiation process the 25th. It's not fun, but it's doable. We're gonna get through it!

Did you find out the histological type (for example, endometrioid adenocarcinoma, serous cell, etc.)?

 

Purplelady80
Posts: 4
Joined: Mar 2018

endometrial adenocarcinoma, FIGO grade 2 with clear cell and mucinous differentiation. and we are going to get thru it.

Soup52's picture
Soup52
Posts: 871
Joined: Jan 2016

I also was diagnosed 3C with clear cell. My journey started in summer of 2015 and my treatments were completed in summer of 2016. Besides uterus I had cancer in 3 lymph nodes and both ovaries and pelvic wash. I had robotic hysterectomy , then radiation both external an internal and 6 rounds of carbo/taxol. I remain clear so far, so there is hope. Keep us posted on your journey .

birdies101
Posts: 1
Joined: Apr 2018

Hi, I was diagnosed with IIIc adenocarcinoma late last year, and my superficial reading of survival stats online initially didn't fill me with a lot of hope. However, I have since done a great deal more reading and with the combined modality adjuvant therapies, they are getting very good outcomes nowadays. I have completed chemotherapy (cisplatin and paclitaxel) and it was not too bad, I am having 5 weeks of radiation therapy in a few weeks time. It is easy to freak in the phase that you are in currently but I can say that the outcomes that are being achieved nowadays are pretty good for this type and stage of cancer.

Purplelady80
Posts: 4
Joined: Mar 2018

birdies101 Sounds like you are just ahead of me.  /sandwich so my chemo is 3 (21) day rounds, are you still working or are you retired?  I have a management job and plan to continue to work.  scared that my performance will be less with chemo fog.  did you get this?

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2484
Joined: Mar 2013

Purplelady, I was able to work throughout all my treatment.  As for chemo brain, I will say it was very frustrating, and I found having a pen and paper handy to write things down - especially if I wanted to tell someone something.  I went to tell my boss something and whatever it was it just was gone.  He jokingly said, "Hello.  My name is Brad".  I laughed but, again, frustratiing.  After treatment I would play little games with myself - make stupid little lists to try and "strengthen" my memory.  

LisaPizza's picture
LisaPizza
Posts: 168
Joined: Feb 2018

Chemo brain is something else. Expensive too ... I lost my phone charger 3 times during chemo (leaving it places, and people did not turn it in). Seriously now!

Abbycat2's picture
Abbycat2
Posts: 639
Joined: Feb 2014

It is nice to meet you in spite of the circumstances. I was diagnosed 4.5 years ago with stage 3a grade 3 cancer called Uterine Serous or Uterine Papillary Serous. I had cancer in my uterus, on and in my left ovary (a tumor) and I had a positive wash. No cancer was found in the excised lymph nodes or in the lympho-vascular space.  I had 6 rounds of Taxol (paclitaxel) & carboplatin. No radiation. I missed work on the days I had chemotherapy and one additional day following my last chemo as I felt exhausted. I continued to swim long distance throughout chemo, but was not allowed to swim until I was healed from my DaVinci surgery. I have no evidence of cancer and as time goes by the likelihood of it coming back keeps dropping. I regret not doing everything in my power to prevent neuropathy in my feet, as the chemo caused it and it has not subsided at all. 

Warm Wishes,

Cathy

Armywife's picture
Armywife
Posts: 193
Joined: Feb 2018

It sounds as if you have a good treatment plan mapped out.  I was diagnosed a year ago with Stage IIIA, Grade 1 endometrioid endometrial adenocarcinoma.  My MDAnderson second opinion read the pathology as Stage IVB, Grade 2.  I received 6 rounds of chemo.  The first was with carbo/taxol.  I ended up in the emergency room on Day 4 with aFib and RVR, so no more taxol for me.  Second chemo was carbo alone.  Rest of chemos were carbo and taxotere.  I took Neulasta after the last 3 chemos.  Docs were split on the benefits of radiation, so we are reserving it for recurrence.  I did have LVI and a positive pelvic wash, but no nodes involved - just random pieces of cancer in a cul-de-sac, in a tube, and on the outside of the uterus as well as inside.  There was also chronic and acute inflammation on my intestines.  I have the genetic markers for Lynch but not the family history to go with it, so the folks at MD Anderson are saying I don't have it.  Anyway, I've learned a whole lot in the year that I've been having this adventure, and you will too.  WE are here for you.   

derMaus's picture
derMaus
Posts: 504
Joined: Nov 2016

Interesting assessment that you have the genetic markers for Lynch but lack of family history negates it. I've never heard of such an analysis; you have the markers - and thus the syndrome - or you don't, in my experience. Very interesting...

christine8822
Posts: 36
Joined: Mar 2016

Hi Purple Lady, welcome to the club. I had the exact same diagnosis as you with 3 of 17 lymph nodes positive, stage IIIC, grade 2, endometrioid adenocarcinoma. I had the exact same treatment as your doctors will give you - the three rounds of chemo, 5 weeks radiation, 3 more rounds of chemo. it's called a Sandwich protocol.

This is state of the art treatment. 

The treatment is 6 months of rough. But I survived it and I am now almost 3 years past my diagnosis and healthy.

A recent study showed having the chemo/radiation protocol reduced recurrence for stage IIIC patients by 83% over no treatment, far more than chemo or radiation alone.

So do not be afraid. A friend told me, "Get your act together, sister, you're not going to die." 

Try to get through the treatment as best you can. I worked most of the time through the treatment as best I could and it helped.

You will cry when your hair falls out. 

You will be tired.

But please have hope that this treatment will work for you and you will have many years in front of you.

Good luck and keep us posted! Everyone is supportive on this board. We all are rooting for you.

 

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