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Where do i go from here?

whatnow50
Posts: 6
Joined: Nov 2012

SO I had my D&C today. Results to come in a couple of days. The waiting for results is the hard part. Have wrapped my head around the Hysterectomy. Just want it over with.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I know this is daunting when you first start to think something needs to be done.
I can't tell you what to do. That is up to you. I do remember how I called friends who had faced this same kind of thing and they all recommended:
1. Get as much information as possible.
2. Pick a medical team that specializes in gynecology/oncology. A large teaching hospital is a good choice.

I remember my local doctor saying they could do the surgery here near my home. Then if things didn't work out I could transfer to Houston. (We live 1-1/2 hrs from MD Anderson Cancer Center) I thanked them and said I would have it all done in Houston. Biopsy, surgery, chemo, radiation...they were not happy.
It is 3 years later and I am still kicking. Had the surgery (Stage IIIC Uterine cancer with involvement of 1 lymph gland). Each visit shows no sign of return.
I lead a very active life. Have my own business and travel. I feel great.

So my advice, treat it aggressively. Get a medical team that will know what the need to do if it is cancer.
Keep us posted. We care.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Try to take it one day at a time as no one has told you cancer. All of these procedures should be done to rule out any cancer, so you're in the steps now.

When I had irregular spotting I had the vaginal ultrasound which showed thickening of the uterine lining. Then suggested D&C to scrap the uterine wall and they found 2 very small fibroid tumors and did the pathology. Mine came back cancer, can tell you this doesn't happen with everyone just cause we go thru the procedures, not always cancer.

Go thru the steps with your qualified doc and see what he suggests next...rule out all the things after each procedure. They could find something which shows no cancer....so will not most likely need hysterectomy with lymph node removal sampling. Don't go there now, just try and stay in the moment and see what happens. They might rule out anything before ever suggesting a hysterectomy.

Cancer can be scare, but remember no one has told you CANCER....so don't get too far ahead of yourself.

We're here for you, so plse come back and ask away....

Hugs,
Jan

seaturtle
Posts: 41
Joined: Aug 2012

I had a hysterectomy in September.

I was totally unprepared - they caught it with a Pap smear with some atypical cells.

I panicked when I got the diagnosis, too, went numb...what you're feeling is normal.\

The good thing is that it is being looked at. If it is cancer, you will deal with it, and the treatments are good now. Try not to dwell on it (impossible for me), just do stay in the present and get someone to talk to if you can, friend or counselor.

I found coming here very helpful and comforting.

whatnow50
Posts: 6
Joined: Nov 2012

My doctor called me last night with the results of my D&C. Endometrial cancer, the words I did not want hear, but deep in my heart I already knew. Time to team build. I am lucky in that I have a great family around me, many of whom are in the medical field. I have one doctor, a surgical Gyn/oncologist. My doctor is already forwarding my records to him.

I live in the Greater Philadelphia Area (Media is my home). I have a referral to a doctor in the Crozer Keystone Network, but I am open to other networks. Does anyone know a Surgical Gyn/Oncologist that they would recommend?

Who else do I need on my team?

Ob/Gyn
Surgical gyn/oncologist

SettledSue
Posts: 22
Joined: May 2012

I'm sorry you got the call with this diagnosis. I well remember when I got the call in March 2012 as I was driving to work. I was given the name of a gynecological oncologist near me, and the rest of the team was referred to me eventually by him. The first step was surgery. Then, since I have clear cell endometrial cancer, an agressive type, I was told I needed chemotherapy and a short course of internal radiation. I had the radiation done as an outpatient at the same hospital where I had the surgery and chemo at one of the two places recommended by my surgeon. Now it is 2 months since the end of treatment and a CT scan shows no evidence of cancer.

Good luck to you. Keep us posted. I live not too far from you -- central NJ.

Sueb

whatnow50
Posts: 6
Joined: Nov 2012

Thank you SettledSue.
I see on different postings people giving the type of cancer with which they were diagnosed. When do I find that out? Will I get that when I get the full pathology results from my D&C on Tuesday? Will I get that after the hysterectomy?

My head is just spinning and I don't know what comes next. I know I call the surgical oncologist on Monday and have a sit down with my OB/Gyn first thing Tuesday. After that I have no idea what to expect.

Not knowing and waiting are going to be my downfall. Being a control freak, it is not in my nature to have someone else directing. I guess it is something I am going to have to get used to.

Any advise you or any one else can give will be greatly appreciated.

beila
Posts: 97
Joined: Sep 2012

Hi whatnow50

Am so sorry to have to welcome you to our club.
But it is an excellent club
Even though I am an MD myself, I learned more from this site than from anywhere else

I want to try to answer a few of your questions:
You should find out the type of cancer (ie the cell type) on Tues from the results of your D&C

The next step is hysterectomy
After that you will get the staging....what STAGE ie degree of spread, what GRADE ie how aggressive is the cell type

Any further treatment (or not) will depend on this

What prompted the D&C? Did you have a pelvic ultrasound?
Do you know what it showed

You can hang onto your control freakdom!!!
I, for example, was a complete paradox, and baffled my doctors by NOT wanting to know my stage or grade.
All I wanted to know was details of treatment (chemo)
That was MY way of maintaining control of MY needs, which have been to maintain positivity and NOT focus on visions of cancer wherever they were in my body.

If you do need chemo, which you may not (though ultrasound results could give us an idea of probability, since you are going crazy this weekend waiting), the standard is Carboplatin and Taxol, which is generally well tolerated eg while on that chemo, my only side effect was fatigue, and I went to Montreal once and Cuba twice!!!
Chemo is usually every 3 weeks for 6 cycles.

The old cliche "one day at a time" is crucial for us.
Also, unless you have any substance abuse tendencies, dont be afraid to take a half an Ativan...very helpful, and only addictive if you take it daily for extended periods

I would be happy to have more dialogue with you to help you through this not very good weekend (I am being the Master of Understatement.....lol)

The other little saying that gets bandied about is "Cancer is a word, not a sentence"

Keep cool, go to a movie, take an Ativan, and write me if you want
Best Wishes
You will get through this One Step At A Time,

Beila

ps as everyone recommends: stay away from the internet...the info is outdated and negative

whatnow50
Posts: 6
Joined: Nov 2012

I was heavy into menopausal symptoms, so about 7 months ago I was put on very low dose HRT. (estrogen & progesterone) At that point, I was back to regular periods. I started with with abnormal bleeding but no other menopausal symptoms. Since there is a history of breast and colon cancer in my family, my OB/Gyn decided to do a biopsy. Had a conical biopsy about 3 weeks ago. It came back with full thickness abnormal cells. So on to the D&C, which came back with a cancer diagnosis.

Trying to hold on to sanity. What do I do next is my plan. Trying not to look to far down the road, just what is next. Tomorrow, I call the recommended surgeon. See my Ob/GYN Tuesday morning to get the full D&C results.

We go from there. I am very blessed for a wonderful support network of family and friends. Not to mention all the new friends I am meeting here.

One day at a time. ONLY good thoughts!

Sisters three's picture
Sisters three
Posts: 156
Joined: Nov 2012

I saw my GYN/onocogist for the 1st time yesterday, you can look back at my posts. She told me that the final grading all comes after the surgery.
She explained that they will be able to see if it has spread and take biopsies of nodes and test all tissues and organs removed. Scary stuff.
I have known since the 19th and have just now started to calm down. I'm finding these wonderful ladies a calming and very knowledgable presence and though I wish you weren't also diagnosed am glad to have another newbie to relate to.

cheerful
Posts: 125
Joined: Apr 2011

Hi:

I joined the Uterine Cancer Board in April of 2011. I was diagnosed with uterine papillary serous carcinoma in February of 2011. My gyn (Dr. Richard Meltz) did my surgery and at that time it was found I was diagnosed with cancer. I had been bleeding for six months and was taking Iron tablets to help with my tiredness. I knew something was wrong after a couple of weeks as I had been continuously bleeding so my gyn ran some tests, but they came back showing nothing since I had a large fibroid blocking everything. I then pushed to have the surgery done so I had it done the 1st of February. I was then immediately referred to an oncologist and good friend of Dr. Meltz who is Dr. Joel Noumoff. I met with Dr. Noumoff two days after my hysterectomy. Dr. Noumoff is one of the top gyn/oncologists in the country and he is an excellent doctor and has great expertise especially with gyn cancers and he is also known nationally. He has over 35 years of experience. I would very highly recommend Dr. Noumoff to you. He is affiliated with Crozer Hospital which is in Upland not far from Media. Dr. Noumoff's office is on the 4th floor of the Cancer Center (Fox Chase) which is next to the main hospital.

I actually live in Wallingford, PA so I am about less than a 15 minute drive to Crozer.

Dr. Noumoff also aggressively recommended that I go through chemotherapy and radiation. The oncologist recommends chemo for all stages of UPSC. I had Stage 1 of UPSC. I started chemo (Carboplatin and Taxol)which is the standard treatment for UPSC in April of 2011 and was done with chemo in August of 2011. I did have a blood transfusion and Neulasta shot after my 5th round of chemo as my platelets were low and so were my white blood cell counts. The Neulasta shot helped me out a lot and so did the transfusion as I felt stronger. I then started 3 rounds of radiation treatment the end of Sept. and finished in mid October of 2011. Chemo does make you very tired. You need the next day after chemo to recuperate. You don't feel much like eating around the 5th and 6th day after chemo but it only lasts for a few days and then you get more of your appetite back. Going through chemo though, you will lose all your hair so you will need to go out and buy a wig. You have about 2 weeks though after the first chemo treatment before you start to lose your hair so it would be better to buy your wig before you start chemo treatment. As of now, my hair has all grown back and I just had my hair cut for the first time in early October of this year. I started losing my hair the end of April 2011 so it was about a year and a half. I stopped wearing my wig in August of this year as I had worn it to church and it had really grown in to a longer length.

You will also need a radiologist to do your radiation treatments. I dealt with Dr. Lamond at Crozer and he is on the first floor of the Crozer Cancer Center. He was very easy going and he told me at the end of my treatments I "weathered the storm". He said he has had excellent progress for women that were diagnosed with Stage 1 of UPSC. I found out that I have a 80 to 90% survival for Stage 1 of UPSC which is very, very good. Dr. Lamond said my cancer was a large polyp about 5 centimeters. Dr. Lamond wanted to see me in November of 2011 after my radiation treatments were over as I had three of them and then I was done with the radiation.

It has been a little over a year now since I ended all my treatments. I have seen Dr. Noumoff three times this year and next year through the 5th year I will see him two times a year. I also need to have cat scans done (this year I have had 2 of them and they have showed no evidence of disease) for which I am very grateful and thankful. I have since changed my diet and eating habits for the better.

Anyway, good luck with everything, and if I can help you with anything more, you can contact me on this board. Also, the ladies on this UPSC board will be able to help you as well.

Cheerful

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I also have endometrial cancer - aggressive uterine papillary Serous carcinoma (UPSC). I hope you don't join that club. But welcome here.

I'm been dealing with this for 4 years. It is sure unsettling in beginning and there are bumps along the way. My best advice is stay positive, stay as active as you can, bring someone with you to appointments to catch things you may not, write things down, get copies of your records, ask lots of questions, and request a TISSUE ASSAY (functional profile) of the biopsied tissue. This will help with treatment decisions down the road.

Waiting is the worst. Try to stay busy and usually the worse things DON'T happen.

Keep connected here. We care. Hugs, Mary Ann

whatnow50
Posts: 6
Joined: Nov 2012

I had my hysterectomy on December 27.  Healing has gone well.  Prognosis is awesome, cancer did not spread beyond the uterus, so no radiation or chemo needed. 

Having said that, my problems are minimal.  I was just wondering if anyone out there has experianced hip pain following DaVinci surgery.  Some days I feel like a little old woman having problems getting out of a chair.  I walk as often as I can, winter in the northeast.  Convinced my husband it was time to re-set the treadmill so I can exercise.  However the man thing hindering exercise right now is hip pain.

Has anyone experienced hip pain?  Does it just take time to pass or is there a deeper problem that needs to be addressed? 

light42day
Posts: 61
Joined: Mar 2012

I'm so glad you got your surgery done and the cancer was contained and you need no further treatment!  I had my DaVinci last year on Feb. 17th and I still have issues with my right hip!  It seems to come and go.  It will be better for awhile and then gets worse if I walk too much or do something to strain it (especially when I dance a lot).  I'm not sure if I need to go get it checked out or not.  I was thinking of going to a Chiropractor since maybe it got out of place or something during the surgery.

 

Anyway,  I'm glad you're doing so well! I feel like an old lady ,too, some days (I'm 57).  But other days I almost feel like my old self.  I also had 3 rounds of Chemo after surgery so I wonder if that could be a factor, too. 

Blessings to you for continued good health and recovery!

ConnieSW's picture
ConnieSW
Posts: 608
Joined: Jun 2012

I don't have any but if you read your operative report and learn all the positions they put usinto during surgery, it could explain it.  I had no idea,just assumed I lay there on my back.

I have had a funny sensation on the top of my left thigh ever since surgery-like numbness but not quite.  I assume it was nerve damage.  It's been nearly a year and either it's better or I've gotten used to it.  Same with the neuropathy in my toes.

 

Stabler
Posts: 49
Joined: Feb 2013

I too am two months out.  I had my DaVinci surgery Dec. 31st.  And luckily I had the same great results you did.  I didn't have any hip pain, but in the groin area I had like a numbness or tingly sensation, especially on the right side.   My doctor told me it was due to the lymph nodes they removed.   As each day passed it got better.  It is almost back to normal now.  I would ask my doctor about the pain.

treebee
Posts: 9
Joined: Feb 2013

Hi There!  My Mother is a patient of Dr. Christine Chu who is an excellent onco/gyno affilated with Penn Medicine.  She was fantastic and is very supportive.  You can look her up online.  Shis even on youtube.  Best to you!

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Hi & Welcome!

I don't know if it is this board, but somehow I missed all your previous posts!

I was reading through everything and was glad to hear they caught your cancer early. I, too, was fortunate that my cancer had not spread - I was stage 1.

I still wonder how some doctors seem willing or able to give information based on the uterine biopsy results and others do not. My regular gynecologist told me my cancer was grade 1 when he called to tell me my biopsy results and also that it 'appeared' to be stage 1, but only the hysterectomy would tell for sure.

He was right!

Also, I had the DaVinci surgery on 1/28/13 and have had intermittent pain in my thighs and my hips. The doctor had told me to expect this short-term or permanently as sometimes there is nerve-damge or the removal of the lymph nodes can cause it. I am only 56 and on some days kind of limp around like I am 90 and I am disappointed I still don't seem to have the stamina to walk longer than 15 minutes without getting very tired and achy. But unlike some of these ladies who walk and run I was not in the best of shape to begin with, but I am working on it!

I also live in the Northeast...in fact am originally from North Wilmington so the weather has been a real deterrent lately. Can't wait for Spring!

Best of wishes for a smooth recovery. Us in Delaware always believed girls from or around Philly were pretty tough...even central Jersey girls....(I mean look at any Philly team sport fans...lol!) so you should be fine although God knows a cancer diagnosis always shakes one to your soul!

Kathy

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