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To chemo or not to chemo, that is the queston

Spidertoe
Posts: 4
Joined: Oct 2012

Hi folks. Just joined this site. I recently had a total hystorectomy to remove a nice sized grapefuit from my uterine/ovary area (along with some lymph nodes). The doctor said it was Stage 1 endometrial adenocarcinoma. The surgery went well. He highly recommended getting chemo just in case there MIGHT be some microscopic cancer cells. I talked to the cancer specialist and he said the treatment would be chemo once every 3 weeks for 18 weeks.
I have done a little research and I question whether getting chemo is worth it. From what I gather, chemo can damage the good cells and cause other problems (bone deterioration). What little stats I can find say that the cancer could still return, even with chemo.
I have had previous experiences with "just in case" drugs/procedures that proved I didn't really need them.
I would rather do frequent CA 125 blood tests to monitor tumor cells, and if they start rising THEN get the chemo. My primary care doctor agreed. Right now, 2 months after surgery it is at 9 (normal range 3-30ish).

Has anyone ever NOT taken chemo after surgery? What were the results? And for those who had surgery + chemo...what were the results? Inquiring minds want to know!

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daisy366
Posts: 1493
Joined: Mar 2009

Spidertoe, what GRADE is your cancer. I have grade 3 uterine papillary serous carcinoma which is highly recurrent. I've been on this site for several years and for those with my type of cancer, I have met some with stage 1 cancer that did nothing and fared well while others have recurrence and fared not well.

Based on my experience, cancer treatment is a guessing game. Doctors tend to recommend "best practice" based on research. There are general guidelines on the NCCN website that you can check out.

I appreciate and respect each person's decision and applaud this individual approach rather than the mass treatment approach (getting the most treatment does not guarantee the best result - I've seen that here too!). If you are comfortable with no chemo and close monitoring and your doc is with you on this, go girl. Chemo does take its toll. However for me I did very well with my first 2 courses of treatment -1) 6 doses of carboplatin + taxol and 2) 7 doses of carboplatin + 35 radiation. I'm now on my 3rd course of treatment (second recurrence) and getting Doxil which is really exhausting me.

I think it's good to gather all the info and then make best decision. Basically, my doctor and I agree to go with the least invasive type of treatment and give it a chance to work with close monitoring and then go to more aggressive treatment if needed.

All the best to you. Mary Ann

nempark
Posts: 592
Joined: Apr 2010

Hi: I so agree with daisy. I appreciate and respect each person's decision. (getting the most treatment does not guarantee the best result - and not getting chemo still does not guarantee the best result. When I was dx endo cancer stage 1a grade 3 I was told hyst and no treatment, then I went to a highly qualified gyn/onc (world reknown) for a second opinion who told me total hyst and 6 rounds of chemo just to be on the safe side. I had absolutely no qualms about this treatment even though I was told how harsh it is. Thank God, I did the chemo and had no side effects except hair loss which was the least of my problem. Long term effects, well I don't know what the future holds. I am now a 3 year survivor (thanks to our Great Creator) and the wonderful and skilled doctors. I wish you all the best and hope you make the right decision. Sometimes Chemo can be our friend. Do not do research on the internet most of the information is old and depressing. Be well and pray to God and ask him to give you the wisdom to make the right choice. Be well friend.
By the way, the ca125 is not a marker for me.

Daughters3
Posts: 7
Joined: Mar 2013

Can you share your cancer type and dr's name? Thank you!!

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

Is there anyone here?

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Kaleena
Posts: 1126
Joined: Nov 2009

Spidertoe:

As the others have said, this is a personal choice. When I had my hysterectomy, they were not expecting cancer. They found it after the surgery in my uterus and ovary even though I had a laparoscopy and trans-vaginal ultrasound which did not indicating anything. I had to go back into surgery a month after my hysterectomy for staging wherein they also removed my appendix and omentem plus lymph nodes, etc. They did not find anything else and I was diagnosed with Grade 2, Stage iiia endometrial adenocarcinoma. Since they did not find anything else, I was given the option to treat or not (the doctor high recommended treatment). I went with the treatment because I know that if I didn't I would worry about every ache and pain that I had. I had a port placed and did my treatment . Then I had 3 brachy radiation treatments. That all occurred back in October of 2005. I had one small occurrence in 2010 which all they removed was a lymph node which had a positive biopsy but once removed showed nothing. I did not have treatment for this.

Also, please note that my CA125 was NOT an indicator so I wouldnt rely on that test unless yours actually was an indicator.

Several people that I knew when I was treating came in after being told they didn't need to treat only to have a recurrence within a year.

But everyone is different and YOU have to make the decision that is right for you.

My best to you.

Spidertoe
Posts: 4
Joined: Oct 2012

Thanks all who commented! I've gotten more info since my post-- My CA 125 before surgery was 130-something. My primary care doc ordered another one last week (at my request) and it was 9. Also, I got more info from my doc's other nurse in Baltimore (he does surgeries in SEVERAL hospitals..he's a busy dude!! - but VERY good)...She said I had 2 cancers--
Stage 1A Ovarian carcinosarcoma AND Stage 1 endometriod adenocarcenoma. I asked her to send me the pathology reports, which she will do Monday. Also, she sent a message to my doc and he will call me, probably sometime inbetween/after surgeries on Tues. Once I talk to him, I'll make the decision to chemo or not. In the meantime..I just keep praying to God to give me the wisdom to make the right choice. I wish He would attach a note to a brick and drop it down on me! I have half the Eastern Shore praying for me, as well as folks around the country and world. I have a lot of faith, so whatever happens is God's will, and I'm ok with that.
Thanks to all, and may God bless you as much as He has blessed me!

-miles of smiles :-) :-) :-) :-)
Spidertoe

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ConnieSW
Posts: 586
Joined: Jun 2012

Spidertoe, I'd like one of those bricks with a note, too. Good luck with your decision. My diagnosis was UPSC 1a and I opted for chemo and brachytherapy. Can't say how it's going to work out since I am only 2 months post chemo but I am feeling good. I walk 90 minutes at a time in town and the woods. Don't know if I could go longer since my dog finds that enough. I have some mild neuropathy in my feet and still need a sleep aide for insomnia. I am 66 so not a spring chicken.

janh_in_ontario
Posts: 110
Joined: Sep 2010

We all wish God would drop a brick with the right answers to life's dilemmas for sure.. but a Preacher told a story/joke once that basically said a man was caught in a flood and had to go up to his rooftop to avoid drowning. The water kept inching up over the roof and the police came in a dinghy trying to save him but he refused saying God was going to save him. Then a helicopter came and tried to rescue him - but no... he was waiting on God. He was a faithful church elder and he knew God was going to provide a miraculous rescue. He drowned.
He got to the Pearly white city and asked God how could he have let him drown? God said "I sent you a police boat and a helicopter - what more did you want?".

All that to say this... sometimes the answers are found in the opportunities provided through the medical system.

That said.. I didn't have chemo - but thankfully my Dr advised me that it was not necessary and in Canada if the Dr says it is not necessary - there is no option other than what he says. I was happy because I had decided I was not going to do the chemo.

I am 2 years next week since my surgery and thankfully I am NED. I have a few issues which keep raising their head but so far they have not assigned them to a recurrence. I will probably have to deal with it sometime in my lifetime again - but I pray not. And if I do - I pray that I recognize the bricks that He drops for me!

Hugs

JanH

beila
Posts: 97
Joined: Sep 2012

Jan

I dont understand why you are putting down our FREE health care system
First you said that we have to pay for a ca-125
In what universe did you experience this?????

Now you say that "in Canada if the Dr says it is not necessary- there is no option..."
Well I'm sure that in the USA one could always find some quack who will charge you an arm and a leg to do whatever you want (like Michael Jackson) and administer drugs that are not indicated.
Do you think that a qualified MD should administer highly toxic drugs if he/she feels it is not indicated?

Most Canadians are proud and grateful for our accessible, free healthcare system, as opposed to the insurance hassles Americans must negotiate

Dr. Beila

janh_in_ontario
Posts: 110
Joined: Sep 2010

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

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

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

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

Sometime comments are misunderstood not knowing everything in the person's mind.  Sometimes it is hard to express exactly what one wants to say.  Perhaps Jan does not mean any disrespect.  I do not either but I do not know about Canada but over the years there are things that need to be improved but they do not get done.  And I think that anger is sometimes expressed also.  I have not done anger yet, but I have always taken care of myself and did not eat all those things and other unhealty things but when I was told about MMMT I did a nsughty.  I weighed 96 lbs when I went into the service 30 years later I weighed 98.  I gained up to the 119 in my late 40's since I did not run and jump etc like in the Military.  But I did stay on the healty lifestyle course.  I have to adlmit the day I was told I went on the biggest sugar binge in my entire life. Chocolate cake wth chocolate icing and chocolate ice cream on top.  I HATE CHOCOLATE!!  Smoothie of bananas and mangos, probalby the healtiest thing I did.  Candy Candy and More Candy.  GLobs of Gravy on everything.  and back to the chocolate cake.  I bet my blood sugar was 500!!!  THen next day back to healthy diet and I agree with who ever talked about the diet.  I believe that Diet can help.  I have nutritionist on my Cancer Team. She basically said I do a great diet but need to add nuts and a few other things.   Anyway it is nice to have a Dr. in the site and will look for your posts. Sorry for the reasons we are both here but insight might be helpful to me when I read your post.  All other posts also.  May even change my mind for having Chemo but probably not. Jessie and I have to have the strongest chemos there are and I am in bad health now.  Not sure for me it is good. 

beila
Posts: 97
Joined: Sep 2012

Spidertoe

Now that you have that additional info, which includes Ovarian cancer, there is no decision,
As a doctor and, now, unfortunately a uterine cancer patient, I cannot stress enough that you MUST have chemo
Ovarian cancer is not something to fool around with.

The prospect of chemo is terrifying to everyone, but once you have it , you will find it is not so bad at all.
While you are receiving it, you feel nothing....as if sugar water was going into your veins.
Then for a few days you actually feel energized, due to 3 days of steroids
Day 4-6 are the "bad" ones
They are like having a mild flu....very mild
Then you are back to normal, except for low energy.
I had no nausea, no loss of appetite.....only fatigue, which persists, but eventually goes away.

Please Spidertoe, this is your life
Do not be passive and rely only on God's will

I wish you all the best

Dr. Beila

seaturtle
Posts: 41
Joined: Aug 2012

Spidertoe, I am not a professional, but I am a cancer survivor. I would agree with beila that despite the discomfort of chemo, it might well save your life. I have two friends who had State 4 uterine cancer. They went through chemo and radiation and are fine, six and seven years later.

I can only say that were I in your place, I would opt for the chemo. My friends did not have too bad a time with it - they have medications now to lessen the side effects.

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nancibee
Posts: 50
Joined: Sep 2012

I totally agree with Beila. Necessary and not that big of a deal when all is said and done. Someone told me they heard it was brutal. I told him the only thing brutal about it was being confined to a chair for 6 hours every 3 weeks.

I just finished my chemo on 10/12 and had my first vaginal brachytherapy on Friday. Not a bit of nausea during chemo. I did not even take the meds they prescribed. I did gain 15 lb. but I think it was more because I figured I deserved ice cream than the chemo itself. Hair loss is the hardest but I have cute caps from TLC where complete strangers complement me on what a cute cap it is. No one can tell I am bald. I love their conductor's cap. My neutrophils got low but if it were not for the blood test, I wouldn't have even known. My oncologist prescribed neupogen and I did not have any side effects from that either. I've had fatigue and tingling long before cancer (multiple sclerosis) and chemo did not worsen it.

I just got home from a 13 mile/3.000 ft. hike with the Sierra Club. I won't be climbing Mt. Whitney or Yosemite Half Dome this year, but I can still keep up with the group, chemo, radiation and all.

beila
Posts: 97
Joined: Sep 2012

I want that cap!!
What is TLC?
Love your upbeat attitude
HOW DO YOU DO A 13 MILE HIKE??????

I will be starting Doxil and, hopefully Avastin, but still have post chemo fatigue 2 months after my Taxol/Carboplatin, which, unfortunately did not work
The fatigue is slowly improving, and when I get in a pool, I can still swim my half mile

Are you in northern California?
I used to live in San Francisco, and of course loved Yosemite, but couldnt hike 13 miles at the best of times!!

Keep up the good work!

hope to hear from you, nancibee,

Beila

Ocalagal99
Posts: 16
Joined: Nov 2013

Hi, Bella, just in case no one has answered your question about TLC - here is the info:
http://www.tlcdirect.org

It is a catalogue put out by The American Cancer Society for hats, wigs, etc. and has some really cute things.  I also bought from them.  Most oncologists offices have them.

Also, the American Cancer Society offers a FREE wig bank at their offices, and I got a brand new onereally sassy made by Raquel Welch.  Just love it! ...and they retail for $300+.  How wonderful are they!Cool

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jazzy1
Posts: 1387
Joined: Mar 2010

I'll pray for the brick to hit you and you'll be on the proper path.

Two cancers -- well I can relate to the "carcinosarcoma" which is generally called MMMT...now don't ask me what it stands for as don't have that here, darn it! But...I have that type (uterine) and it's not the general "garden variety", but very aggressive and must be treated as such. I wasn't as lucky to have stage 1, as I'm stage 3 and assuming this will be a grade 3 cancer for both of us, too.

Keep this in the back of your head as even when stage 1 with MMMT you might need treatments. Best to knock it down before it starts to spread and become more invasive. Note -- my opinion so don't quote me here.

In either case, ask lots of questions and avoid the internet...statistics are fairly outdated on this MMMT.

Cancer is not a sentence, it's a word!
Jan

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marti968
Posts: 31
Joined: Apr 2013

Jazzy1 you are the first person that I have seen in all the research on differnent sites.  You are obviously healthier than I am.  They said that I had three kinds of cancers in there,  Oh yes very aggressive and the outcome is very dismal.  I have a hard time understanding if they do a hysterectomy, and do the cancer wash, and IF it shows no cancer and do a PET scan which is supposed to catch "even the smallest cancer cell can not be found" then why would one need to have such a life expenctancy.  I know tons about other cancers and long term care.  After leaving the Military I did home care and also worked for my favorite Hospice who took care of my mother, first (34 yr marriage)  and second husband (lost him in 1 1/2 years) and now they are going to care for me.  Thye are the kindest knowledgeable people that I know of in the Hospice field.  I talked to several of them before picking one.  I found that the MMMT info is outdated also but as I said before I am on the medical sites and wow it is the pits.  You and I rare?

Spidertoe
Posts: 4
Joined: Oct 2012

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!

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daisy366
Posts: 1493
Joined: Mar 2009

Spidertoe, I love your story.

As far a cost of health care. The hospital sent cost breakdown - cost of doxil was $25K and infusion another $1K - $26K! They saved the $4K neupogen shot on me, though. How does anyone manage paying for that??

God bless you. Mary Ann

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txtrisha55
Posts: 424
Joined: Apr 2011

Hopefully the sign is the right one, but it sounds like it is for you at this time. Please make sure you do all the follow up appointments so they can test you, in case something does come up. Cancer is a funny thing but very serious. Praying that everything will continue to come up good for you. trish

janh_in_ontario
Posts: 110
Joined: Sep 2010

Be still and know that I am God. It is hard to do - but it works!
Bless you and keep us posted!
JanH

nempark
Posts: 592
Joined: Apr 2010

I really do admire your strong faith in God. Okay, I know that this is not the time for buds and flowers, where I live they should all be gone by now. I don't have buds I have roses and roses still blooming. I wonder if this too is a sign from God.

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daisy366
Posts: 1493
Joined: Mar 2009

Sure seems like it could be!! Super roses!! Awesome.

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marti968
Posts: 31
Joined: Apr 2013

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.

 

deblola52
Posts: 1
Joined: Mar 2013

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.

fanniemay
Posts: 52
Joined: Nov 2011

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

sleem
Posts: 92
Joined: Feb 2010

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.

 

 

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

I thought I knew a lot about this stuff---things are so different.  I do not know what some this means.  I retired in 1983 Military and retired from Nursing out of the home at least in 1990.  I was a 24/7 caretaker of both husbands so one never stops being a nurse of some kind.  (giggle) I used to know surgical proceedures, pre- and post-operative care, and caring for the person but not how to be a patient.  That is what I am now.  The patient and cetainly not the nurse.  I need and want to know everything and try to make the best decisions.  I have to make it thru the surgery first and if and when I do then I need to figure out what to do then.  Please do not get me wrong.  I respect doctors and listen to them.  I have been with the same doctors for over 20 years save one who reffered me to this newest doctors. I just have issues with the new doctor and he with me.  But we have both learned to understand and respect each other.  I am not afraid to say no to him question him and not to agree with him.  He thinks he is right no matter what so we have some thinking not in sync.  He is the best there is I have been told by many people (I have been told by my own GYN that if she needed his services he would definately be the one she would go to). In time I may completely trust him.  To be determined later. I am going to go look up this site and read it.

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marti968
Posts: 31
Joined: Apr 2013

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.

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

 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

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daisy366
Posts: 1493
Joined: Mar 2009

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
Posts: 6
Joined: Jul 2011

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

 

susangr
Posts: 63
Joined: Oct 2010

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's picture
laura25
Posts: 160
Joined: Mar 2011

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.

 

 

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

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

Double Whammy's picture
Double Whammy
Posts: 2299
Joined: Jun 2010

And am comfortable that my surgeon was skilled in the process.  That being said, I see there's a class action suit underway for women who have been "damaged" by robotic surgery.  I think the issue is some surgeons do not have appropriate skills to use it and are more likely to nick bowels, cause nerve damage, etc.   How do you know if you're in good hands?  Experoemce I guess.  Mine had lots but I was too stupid at the time to even consider this might be an issue.  My gyn onc did tell me that he has had to revert to open on 4 occasions because he could not access some areas for whatever reason and that his goal for me was to give me the "best cancer surgery" that I needed no matter how he had to do it.   I put my trust in my gyn oncs skills and experience and it all turned out fine for me.  I had pelvic lymph nodes removed, but not aortic.   I don't know why that decision was made but  my cancer was the garden variety type, endometriod adenocarcinoma Stage 1a, Grade 1.  I don't know if a more aggressive cancer had been suspected or if the grade and stage had appeared to be higher if the type of surgery would have been different or not.  Maybe. 

My recovery was phenomenal.  I also had breast cancer and was worried about delaying chemo for the breast cancer too long (the hysterectomy got in the way) so having a shorter recovery was high on my list of priorities.  I  believe the process was entirely appropriate for me with my diagnosis and in the hands of my gyn oncologsit.

Suzanne

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

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

 

sunflash's picture
sunflash
Posts: 153
Joined: Aug 2011

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!

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