To chemo or not to chemo, that is the queston

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170905/

This is a very technical article. Yet, if you read the summaries, it has some information that deals with different types of treatment and UPSC. I might help you.

I am --1 a Grade 3 UPSC. My Gyn-oncologist has told me this past month it is now referred to as USC. Also, what I've been told is USC is automatically Grade 3. I have started my 5th year of NED 50 months (just 2 months out of 4th year ending chemo) &  I was clear with this week's check-up. I had the complete staging at surgery with what is called the 'Sandwich Method'. 

CA-125 article might be of news...

http://www.medicinenet.com/ca_125/article.htm

This article is one I used to understand that CA125 started in using it with ovarian cancer.

Mine was in normal range when diagnosed. Different CA 125 tests can have different 'normal' ranges. My former type CA 125 test used, I had a baseline after chemo of 14 with 0-35 range; with new methodology at my hospital...change of manufacturer with same range 0-35, mine jumped to 21. It then took two more checkups over my regular schedule visits to determine with this product change that this was my new baseline of 21. The article helps understand this.

I too always have a sense that there will be the unknown of ‘time’ for me.

Good news for each of you in each visit, test, etc.

I have been recently diagnosed as having Carcinosarcoma MMMT (Malignant Mixed Mullerian Tumor) Hope everything is spelled right. I am 73. Do not have a Thyroid or Parathyroid glands. I had to have them removed with a portion of my throat to cancer. That was Sept 2000. I went from 119 lbs, to 398 by Christmas that year. I have had many health issues directly related to that. I now have Emphysema, Diabetes, and a morbid weight problem and today weigh 205. Synthroid did not "kick in" for over three years and I did not lose a pound until that time. In the meantime I am wheel chair bound. All of this was caused from a drunk driver who almost killed me. I have survived all this stuff but MMMT most likely will not. You are right about the doom and gloom on the internet. But the Medical Sites that the research team following me has the same information. My research team is now my friends. I was a number to them but met them about 3 years later and they come to the state that I live May and Oct for something at the local Hospital their name. Then I meet them in the Doctor's Lounge. They want to know in general how I am etc. Over the past 7 yrs. we have become friends. This is the first time we are only going to go for dinner and past the interviews and just socialize. They have done research in the feasibility of me doing Chemo. I say no I am not. I will not survive the Chemo for many reasons. So far they and my Primary Care doctor agree with me and also my "Cancer Team" at the hospital is also not against this. Of course they cannot agree or disagree with me. The only one who is pushing me is the GYN Oncologist who was stupid enough to let me hear him tell his MMA that "Oh, she has the greatest insurance there is" somewhat exactly like that which made me feel like a piece of meat he could just keep cutting on. I am not overly sensitive you would have had to been there to understand. He badgered me into the surgery May 3 so I let them schedule me to get out of the office, but since he ordered a PET scan at my insistence before the surgery, I did not cancel the surgery until that was done. I did cancel May 3 right after getting the results of the PET. Much improved over the original report but still MMMT and another huge Cancer Tumor. I do not even feel sick or have any pain and except for the dark circles under my eyes and the 40 lbs weight lost the past two months I am the same. I did reschedule the surgery on May 20th since the PET scan said no Metastasis. But I did tell the GYN Oncologist he was not going to cut me again. He and I do not like each other but he respects me and I do not respect him on some levels but he is a great surgeon other people tell me. I am a retired Military RN and have a varied background but also I worked primarily in surgery and Oncology. When the Sonogram was done I saw it and told my GYN Doc that I had Cancer and he said yes. I know what it looks like etc. However I did not know I had MMMT. It is a diagnosis new to me. No one at the hospital where I am having surgery has heard of it. I have gone to three meeting with doctors who have heard of this Cancer to talk including a few that have come from a town about an hour away. I am an organ donor but now they can only use my Cornea's and I forgot the other thing. The rest of pre-me will go to Mayo Clinic and Mount Sinai for research. It might help save another life. They need people that have that Cancer to do the research since it is so rare.

Spidertoe said:

more update
Hi folks. Thanks for all the comments. As for the health care system in the U.S. and Canada...they could both use improvement,and they both have benefits. I don't have insurance, so whatever medical bills I have, is up to me. I am getting some discounts and financial help, but it still costs an arm and a leg. Any blood tests/pap smears I have are just $30, so that isn't so bad. I can get my mammograms for free.
As for God dropping a brick on my head..well, he did! (ok, not a brick, but 2 rose buds) I've prayed about this for several weeks and asked God to give me the wisdom. Last week, I even prayed w/ my pastor's wife. She added "and give her a sign to let her know that she is making the right decision." Saturday, I was doing some weeding, got all the weeds out from under the rose bush, and noticed 2 rose buds on it! This is NOT the time of year for buds/flowers --the bush is SUPPOSED to be dormant. Sunday morning I woke up and realized those buds were a sign from God letting me know that not doing the chemo was the right decision. I'll keep everyone posted as the days go by. God bless everyone!

Oh I could not imagine not having insurance.  I cringe when I recieve my copy on the statesments.  I haven't even done the really expensive stuff yet. It is a comfort to not have to worry that.  

I have three of the best insurances there are and so do not have to worry about that but I still need to get thru everything.  I am not a whimp and I do not give up.  I wish I could share mine with you and everyone else. 

 I do have to go thru everything alone since I have outlived everyone. My parents were very mature when I was born. I am not playing the pity card here. I am a very strong and independent person.  BUt we all need someone sometime in our life.  God has always been there so I am not truly alone.

I you or anyone else would like to E-Mail me I would love to hear from you:  wer70@cox.net.  This might change when I move Tuesday.  I am not sure if they are in the area.

janh_in_ontario said:

Planet Toronto
I live in Toronto and Dr. Raymond Osborne at Sunnybrooke Odette Cancer Clinic absolutely refused to even write me a requsition for the CA125 test - even though my Mom died of ovarian cancer. I had my Family Doctor "humour me" into writing the requisition for the test - and I paid $35 each of the 2 times I have had that test done. I have never been given a CT scan, a PET scan or an MRI. I asked for a chest xray and the Dr told me they only treat symptoms. And if I had anything on my lung it is incurable and why would I want to know that?

Our FREE healthcare system is not free. I personally pay 55% income tax and I had no choice in what Doctor I went to for my cancer treatment. If my gynecologist sent me to Sunnybrooke and I decided I want to go somewhere else there is a huge mountain of effort to switch AND I know the new system would wonder why I changed and I would be considered a rebel.
You are a Doctor - I would ask what planet do you live on if you think our healthcare system is good. Yes, there is no consideration as to whether I can afford to go to the doctor or stay in the hospital and I would definitely say that is a huge blessing. But the level of medical attention available in the US is extraordinary - if you have insurance / money.
And didn't I see you asking about a trial or something in the US? Why would you need to do that if it is not to say the US system is superior?

Our healthcare system needs reform. So does the US.

I have lived in both countries and I know from whence I speak.
I would definitely not want the burden of worrying about how to pay for my treaments - but I also would like to be able to choose and actually get the care we all deserve.
I am sorry I touched a nerve - but trust me I see the lackings in both - and I see the benefits in both. It's too bad we can't have politicians that have the ability to combine and find a better option for everyone.

Peace -
Patient Jan

I agree with this...a lot of us say it is not Health Care it is Horor Care...

 How bad was the recuperation.  Is there much pain?  Is there some way to do a private post?  If not please E-Mail me so I can ask you a couple of questions about your surgery.  I have never scrubbed for this type of surgery with the three doctors I scrubbed with.  Oh sorry that just means I worked with in surgery.  In the day we called it “scrubbed”.  I do know that the doctor is going to use the DaVinci Robot to make 5 holes.  No experience with the DaVinci Robot either.  Supposed to make the surgery easier on the patient. wer70@cox.net

marti968 said:

Hysterectomy

 How bad was the recuperation.  Is there much pain?  Is there some way to do a private post?  If not please E-Mail me so I can ask you a couple of questions about your surgery.  I have never scrubbed for this type of surgery with the three doctors I scrubbed with.  Oh sorry that just means I worked with in surgery.  In the day we called it “scrubbed”.  I do know that the doctor is going to use the DaVinci Robot to make 5 holes.  No experience with the DaVinci Robot either.  Supposed to make the surgery easier on the patient. wer70@cox.net

Did you. Discuss pros axons of robotic? One is they do not have as good look inside as with open. If body can tolerate I think open is way to go. Just my opinion and what I've gleaned from others.

best wishes. mary ann

Debz said:

robotic surgery

Hello all

With all due respect I must comment on a falsehood that has been repeated many times on this site. Robotic surgery has an enhanced visualization and the surgeon can see things otherwise hidden or too small to see with normal eyesight. With robotic surgery the surgeon views a magnified, high resolution 3D image of the surgical site. With robotic surgery there is a shorter hospital stay, less blood loss, less pain, less scarring, less risk of infection and a faster recovery.

I had da Vinci robotic surgery for Stage 2, Grade 2 endometrial cancer. I did alot of research on the surgery and was convinced this was the way to go. At the end of this month I will be 3 years NED.

When I went for a second opinion on the same day I went for a first visit with the surgeon who did my robotic surgery, the second opinion doctor said that my uterus was too enlarged for robotic surgery and she would have to do open surgery. Earlier that day the surgeon who actually did the surgery said that my uterus was a little bit enlarged but she would have no problem doing the robotic surgery. What the second doctor never told me and that I found out later was that she was not qualified to do robotic surgery. That surgeon totally mislead me and this was at a major New York City hospital. 

Maybe all the misinformation is in fact disseminated by doctors who are not qualified to do this type of surgery or belong to hospitals that do not own the robotic surgery system.

I have lurked on this site for a few years now and I want everyone here to know how impressed I am with how helpful you all are to others in their time of need. 

Healthy wishes - Deb

 

I support everything Deb says about this approach. I had 6 hrs of surgery and was out of the hospital within 24 hrs. Recovery was non eventful and allowed me to start chemo/ radiation treatments within 5 weeks.  Optimal time I have been told is within 5-6 weeks. The other thing about thiis surgical approach is that there is less bleeding so visualization is much better.  Since the procedure is still relatively new it would be prudent to ask the surgeon about their expertise and the facilities experience. Sincerely Susan

laura25 said:

Agree for most part

Hi Deb... I totally agree that robotic is the way to go if you can.   Less time recovering, less chance for infection and less hospital stay.  But for me I had to have an open surgery. 

My doctor does both robotic and open....  my cancer was found after robotic was done for a partial hysterectomy.  He said altough robotic does  have enhanced visualization, it does not see what is "lurking" around the corner.  He was adamant  that my case should be open  because it would grant him the ability to feel and  move things around while the robotic would not.   

In my case I was stage 3C grade 3 and dx at age 45.  I'm now almost 2 1/2 years out since dx and almost 2 years since stopping chemo.  I believe in my case open was the way to go. 

Its terrible that you had a Dr say no to robotics because she wasn't certified in it.  That is just shameful.  I love this board, we are all in this together and the information given is so valuable.

 

 

I went to a Gyn Onc Dr at a NCI recognized hospital.  She does both robotics and open.  She chooses open for the same reason you said Laura, to get in there are really look around.  That is why after surgery, she told my waiting family and friends that it looked to be contained to just the uterus but patholgy would have to come.  Turns out Grade 3 MMMT, Stage 3c1 because there were two microscopic cells in 1 lymph node.  Dr. also said that she only wanted to give me chemo, carbo/taxol and no radiation because with everything removed there was nothing left they could pinpoint to radiate.  Had surgery 8 April 11 and started chemo treatment 6 May 11. There was only a 4 week period between surgery and 1 st chemo.  I had six treatments till the last one on 22 Aug 11. 

I was not given a choice of the robotic but have heard that it is a good way to go for some but sometimes even with robotics they have to go back in with open.  Cancer comes in all shapes and forms and no one way is the best way to do surgery or do treatment.  Everyone is different, cancer is different but the journey and feelings we women go through are pretty much the same.  That is why this board is so great because we all can relate to someones feelings.  Best to all. trish

deblola52 said:

chemotherapy 'yes or no'

For anyone undecided about going further down the conventional medical route, look at Phillip Day's website 'Credence.com'

I already have some of his books and attended a one day course yesterday, I already had serious concerns about cancer treatment in this country and have spent some time with the Gerson support group in London.

Yesterday totally convinced me that diet is the answer to cancer and other diseases, something the medical profession will not admit. It is for everyone to decide, the problem with chemo is it weakens your immune system and that is required to restore your health.

I am in the medical profession and have been looking into this for years, it is an area that really interests me and I have sadly seen relatives die after going down the conventional route but I have friends who have had chemo and radio and appear fine although still abnormally tired 5 years after their treatment.

Phillip Day has several DVDs, a good start is 'Healing Cancer from the Inside Out'.

I have just seen your post about your faith in God, amazing, I believe the Lord Jesus is the only true healer, may God bless you.

a year and a half since my surgery and I still get tired a lot.  After doing 15 minutes of manual work(like cleaning or gardening) I am so tired and need to rest.  So pleased to see that you believe Jesus heals.  I totally believe I would not be here if it had not been for my Lord and Savior Jesus Christ.  I started a group on Facebook called, "Christian women living with Cancer"  We encourage each other through scripture and faith building.  Please recommend my site to whomever you think can benefit. Thanks &  God Bless

Kathy G. said:

Hi everyone!
I had the

Hi everyone!

I had the DaVinci robotic surgery and although my doctor does not give me the warm fuzzies he has done loads of these surgeries and was 100% accurate in his pre-diagnosis of Stage 1/Grade 1 uterine cancer.

The only thing that concerned me was that he reported my uterus was larger than expected and he had to be extremely careful bringing it out the vaginal canal. I asked if any cells could have 'spilled' into my vagina during this process and he said he sincerely doubted it due to the way he got it out.

Like Suzanne, my recovery was pretty much uneventful except ofr a difficult UTI 3 days out. But that was attributed to the catheter and 'bumping up against other organs' during the surgery.

I would hope I am not beint naive or too trusting of the medical community because I've seen and heard alot of horror stories and have definitely learned we need to be our own advocates. But surgeons are using laprosotic surgeries for a variety of conditions including other forms of cancer. IF the surgeon is skilled in doing these surgeries I would hope if they ran into a problem they would rever to open surgery. However, would this have been approved if you could not accomplish the same examination necessary while in there as you can with open surgery

 

I too had robotic Davinci surgery. I asked my gyn/onc about the effectiveness of this surgery versus open abdominal. She told me that the success of the surgery depended on having a surgeon who could do this WELL. She had performed many robotic surgeries and told me mine was a piece of cake even though I'd had prior radiation which could have made this tricky.

My recovery was amazingly fast, and I have three barely visible scars on my abdomen which look like small scratches. It amazes me how far we've come as far as surgery........now let's just figure out a cure for cancer and we'll be good to go!

Hugs to all!