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New here-just told this morning.

Donswife48
Posts: 326
Joined: Nov 2015

Hi, everything is moving quickly, saw a gynocologist on sep 30, received news 5 days later that it was cancer, saw my gyno/onc surgeon Oct 21st, had Da Vinci surgery on Nov 6th, today was told I have mixed endometrioid (75%) and serous (25%).  Figo Grade 3, one lymph node involved (IIIC1).  I guess that means I'm stage 3 grade 3?  My doctor said we will treat with chemo only (no radiation).

So lots of questions, why no radiation?  He only said they don't do radiation for this type of cancer.  He also said we don't need to do any other scans etc.  Part of me is wondering if it is because it was in the lymph node that it is possibly everywhere else?

My big question for today is what is the typical chemo timetable.  I see where people talk about 6 rounds of chemo.  Does that mean 6 doses, or 6 months.  How often do they do chemo, Iagain I think some say about every 25 days? 

I know I should wait until I see my doctor next Friday, but I'm always curious (I read my pathology report last night on line before he even called me today).  Wishing everyone who reads this (and even those who don"t), a "best day".

 

Kaleena's picture
Kaleena
Posts: 2037
Joined: Nov 2009

Sorry to hear about your diagnosis.   Please let me say that if at any time you do not feel something is being done, please get a second opinion.   As to your treatment, six rounds can be six months of treatment (1 treatment per month).  Sometimes they will decide to do Radiation after you completed chemo even if they said they wouldn't.   Thats what happened with me.   I had to change my chemo so I ended up going every two weeks for six months.

Then they may want to put a port in.   This is where the chemo will be given each time.   It saves your veins.   Yes it is a procedure but it really helps.  

I am curious as to why they don't give you a PET scan?   At least a CT scan at first.   A PET scan shows places that may have active cancer.   A CT scan shows masses or no masses.

My best to you,

 

Kathy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

Sorry to hear about your UPSC. You have come to the right place for support and information.

My surgeon prescribed 6 rounds of chemo that would be done every 3 weeks. For a total of 18 weeks. I believe many of the ladies currently getting chemo are on this same schedule.

My local oncologist wanted me to do weekly treatments for 18 weeks. I did 6 weeks of that and then requested to go to the larger dose every 3 weeks. 

I'm surprised to hear that your doctor doesn't want you to do radiation. It is my understanding that for UPSC, chemo and the internal radiation at the vaginal cuff are recommended.  Like Kathy said, you may want to get a second opinion if you are not comfortable.  BTW, I still haven't decided if I will get the radiation. There is a thread about ladies going through chemo and another thread about radiation that was started within the last couple of months.  Please take the time to read the postings. There is a lot of information that can help you get an idea of what will be involved for you over the next 6 months.

Take care of yourself.  They moved you very quickly through to surgery. That was great so that you didn't have to wait for long to know what you are dealing with.

Love and Hugs,

Cindi

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

So sorry that you have to come here, but this is a good place to come for information and support.  There are many different types of chemo and each has its own time frame.  I have had Taxol/ Carboplatin and that was given every 3 weeks.  I was also on Doxil and that was given every 4 weeks. I have had to have chemo postponed because of blood problems several time

Get a port if you can.  It makes things a lot easier and saves your veins. 

Hugs and prayers for you, Lou Ann

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

 

The beginning of this journey is the most shocking, so I am sorry that you are experiencing this heartache.  If your cancer is 10% or more UPSC - then you are considered to have UPSC. I was diagnosed with UPSC and had 6 (called rounds) of Taxol/Carboplatin, the evidence based treatment available. The chemo is usually given every 21 days. I did not have radiation treatment because: 1.) There was no indication that I had cancer cells growing on the vaginal cuff so why radiate healthy tissue and suffer the horror of radiation damage?; 2.) If I should develope cancer on the vaginal cuff than, and only than, would I consider tolerating the damage caused by radiation treatment. 3). It's a mute point, really, because all the radiation in the world is no guarantee that the cancer will be contained. I am more than 2 years out from surgery and am NED. 

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I am thinking the same thing, Abby.  When I get done with chemo, unless it can be proven to me that the cancer has spread, I am going to forego radiation.  The two CT scans I've had have shown nothing.  I think my doctor will go along with me since he only talked about the "possibility" of needing radiation.  Sometimes the cure is worse than the disease!

Take care,

Eldri

 

 

flyerette65
Posts: 65
Joined: Oct 2014

Sorry you had to become a "member" of our group, but you will get wonderful support, information and advice here. I, too, am wondering why no scans, lung x-rays, blood prior to surgery? I had to have a CT pelvic scan, a lung scan because the lung xray showed a nodule and bloodwork. Did 6 rounds of carboplatin/taxotere which took longer than 6 months because I got pneumonia 3 times.  I think what really happened is that they did not treat my pneumonia aggressively the first two times and it never got cleared up. The third time they gave me a very expensive antibiotic, name I can't recall, and it cured me. I declined radiation because PET scan showed no active cancer. The radiologist was ticked that I made that decision, but, after all, it is my body. He said I would die without it and here I am, 4 1/2 years later! I just could not see exposing myself to bladder, kidney and bowel problems and increasing risk for colon and bladder cancer since the PET scan showed no active cancer anywhere.Why radiate healthy tissue just because that's the usual protocol. Now, I think if I had lymph node involvement I might have done radiation but I can't second guess myself now. I also had a port and had it removed 2 1/2 years ago.  Tomorrow I see my oncologist for my 4 1/2 year check up.  I was Stage 3A, Grade 4 and have been incredibly lucky (so far).  Fingers crossed for a good check-up because I know it can change in an instant. I find joy in the little things, a beautiful sunset, a golden flicker coming to the feeder while I'm still putting seed out, the deer that visit the yard daily,family, good friends, good food, good wine, good times. One day at a time. Enjoy each golden hour. The most important thing to remember is do what feels right to you. You must be your own advocate. I had what they're now saying was a traumatic pubic bone rupture.  I've been in pain for 8 months.  Went to five difference docs.  Finally, the last doc decided that I needed another MRI and the bone still isn't totally healed so he told me do nothing that hurts and put me on predisone for two weeks. I am feeling almost pain free. I have a friend who's had a lymphoma recurrence.  Her prognosis isn't good but I tell her you are a statistic of one. Only God knows whenHe's going to call you home. Live your life! I'm not a "religious fanatic" but I've put my life in God's hands.  He'll take care of me, He'll take care of all of us!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

 

The beginning of this journey is the most shocking, so I am sorry that you are experiencing this heartache.  If your cancer is 10% or more UPSC - then you are considered to have UPSC. I was diagnosed with UPSC and had 6 (called rounds) of Taxol/Carboplatin, the evidence based treatment available. The chemo is usually given every 21 days. I did not have radiation treatment because: 1.) There was no indication that I had cancer cells growing on the vaginal cuff so why radiate healthy tissue and suffer the horror of radiation damage?; 2.) If I should develope cancer on the vaginal cuff than, and only than, would I consider tolerating the damage caused by radiation treatment. 3). It's a mute point, really, because all the radiation in the world is no guarantee that the cancer will be contained. I am more than 2 years out from surgery and am NED. 

pinky104
Posts: 574
Joined: Feb 2013

Interesting name--I am also a wife of a Don and I was born in 1948.  I don't know if that's what your 48 is all about or not.  Anyway, I am a 5 year survivor of stage IVb (the worst stage) of UPSC (which is serous carcinoma).  I had only chemo, not radiation.  My treatment was what is the standard treatment, according to my gyn/onc:  6 rounds of a combination of carboplatin and paclitaxel (also known as taxol).  This involved going in every 3 weeks for chemo for a total of 6 visits.  The total adds up to 15 weeks of treatment (weeks 0, 3, 6, 9, 12, and 15).  It seems like you'll never get done with it while you're going through it, but it's actually less than 4 months.

I've been under the impression that radiation isn't normally done for the higher stages of cancer like mine because the radiation would have to be done in too large an area of the body, so it wouldn't be safe to get that much radiation.  However, I have seen a few people mention having had radiation in the later stages on this site.  I didn't have any lymph node involvement.  My cancer spread laterally (uterus, both ovaries, the omentum, and the small intestine).  It was considered stage IVb because it "went out of the pelvis."  I'm sure I had fewer side effects from not having to go through radiation.  I have peripheral neuropathy, that's all. 

Serous cancer is a very aggressive cancer, so that's why it's a grade 3.  It's not the only grade 3 cancer.  MMMT is another one that we sometimes read about on this site.  It's been my impression that it's kind of a crap shoot as to who survives UPSC and who doesn't.  Sometimes, the people with stage II go before those in stage III or IV.  Many people with this in higher stages get treated like it's just a chronic disease, going on for years with it. 

With stage IV, I had just a 9% chance of survival, but I'm still here and have no evidence of disease.  I'm never positive that I'll stay that way, but for now, all's well.  I hope you beat this beast like I did.  Don't let the little things get you down.      

libby.sparks's picture
libby.sparks
Posts: 12
Joined: Nov 2015

Hi there

Reading your post with much interest. I was also diagnosed with USPC, IVB in August 2015. I will receive chemo 4/6 (carbo/taxol) next week. I had no lymph node involvement (52 nodes tested), but the cancer was resected from bowel, bladder, omentum, diaphragm, small surface lesion on the liver, ovaries and tubes. All grossly visible lesions were resected. 

I developed bacterial peritonitis and bowel obstructions following surgery. Once those issues resolved I have begun feeling much better. More energetic. good appetite. nearly normal bowel function. It's a blessing to have energy, and to feel hungry and thirsty again.  

CT scans post surgery have shown no evidence of cancer; CA125 has fallen steadily from 1218 to 13. I am very encouraged, but realistic that things can go the other way.

I pray that we are all doing everything we can to maintain NED status. 

Take good care

Libby

 

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

Hi, I'm Eldri and I'm 63 years old. I had my hysterectomy on September 30th and my first chemo on October 27 after being diagnosed with Stage 2, Grade 3 UPSC following a CT scan of my lungs, pelvis and abdomen (they were clean) so I'm a little ahead of you.

My doctor, a gynocologist/oncologist, is doing Taxorene and Carboplatin, six times, three weeks apart.  After that, we'll decide whether to do radiation.  I also had a port installed because my veins are so hard to hit.  

I'm glad to meet you, but sorry it had to be under these circumstances.

I agree - maybe get a second opinion.  Keep us updated.  

 

Take care,

Eldri

 

molimoli
Posts: 514
Joined: Aug 2014

Sorry you had reasons to come, but we are here , We'll help you maintain your sanity and gently accommodate your 'crazy ' on crazy days, so welcome. Many amazing ladies here are better able to answer your question. I will comment on the rough mental ride you will probably have in the next few months, but stay strong and courageous my sister.Sustained NED is your goal, stay alert, very alert. 
Outrun depression , if you cant't run walk very fast away. Don't let it get a hold of you , it kills fighting spirit.

 If you are not careful your whole being will be overwhelmed by this .Find the many things in your life that makes your glass appear half full, never lose sight of those things as you battle this beast or you will have none of you left ,You will be confused, angry,sad , self blaming,gene blaming,food blaming , water blaming, air blaming,everything blaming,none of that matters at all, If you were taught not to swear you probably wont but I guarantee you ,you will be thinking dem swear words before you get a handle on this .Don't get bogged down with the 'why'.there are no answers and its' from none of your actions,it just IS.

 To steady me  I think of all the little babies with cancer , it's not exclusive to me , or even humans ,even mountain goats get cancer, Just to be born makes us a likely candidate . It's not yet understood by  anyone alive. we can only resolve to navigate  the path the best way we see fit, sometimes with our doctors and sometimes with self.

Try to stay focussed on living your best life everyday. We are here to pick you up when you stumble ,falls are not allowed so know that in spirit we will be with you all the while, just log in and say help!! ,There are women here that knows more than some cancer doctors because one is living it daily  and one is a part time ring master. Ask the doctors a lot of questions , if you get no answer ask again,answer unsatisfactory?  then get 2nd opinion. You won't be that unlucky to get 2 dingbats in a row. If your mind is troubled ,don't keep your mouth shut, speak up , learn everything you can about this cancer, knowing will amaze and frighten you but it helps to get your fight on, entertain no other battle but You Versus Cancer.

Showers of blessings. Moli

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

with stage 3a UPSC. He said that radiation is used to attack a specific target. He told me that my positive wash meant that I had cancer cells floating around in my peritoneal cavity. To kill the cancer he said that he would also have to destroy my intestines, urinary bladder, stomach, etc.. Chemo is a systemic treatment and it made sense to me that I should be treated with chemo. If you are thinking of getting another opinion, obtain copies of your operative and pathology reports. There is a standard of care for all diseases so any treatment recommended must be reasonable and within this standard otherwise insurance companies won't pay for it.

At first-when I was still in shock- I carefully wrote all my questions down and brought that with me each time I saw my doctors. I no longer do that. I have educated myself enough at this point. I still occasionally read professional research papers particularly published by ASCO.

I wish you much success with your treatment.

Cosaltlife's picture
Cosaltlife
Posts: 8
Joined: Jan 2016

Thank you for this post. Just joined this week. Been at this for 2 months, trying to absorb much as I can as fast as I can. 

Thanks again! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2804
Joined: Mar 2013

Donswife, I think the ladies here have given a lot of great answers.  I am sorry you have had to find us, but please try and take a breathe.  It is a lot coming at you and it is overwhelming.  

A lot of the women here have received chemo every three weeks for a total of six treatments.  To have a port or not have a port, it will be the conversation to have with your doctor.  To have nuelasta to not have nuelasta, it will be the conversation to have with your doctor.

You can do this.  You know how I know?  All the fabulous ladies have dealt with lots of treatment and they are always here to help answer any questions.  You are not alone.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

As others have said, sorry we had to meet under these circumstances, but I am glad you have found this board.  Did you not have a CT or PET scan prior to surgery?  That would have shown if there were masses or cancer activity elsewhere in your body.

I have stage 3 carcinosarcoma, or MMMT, also a grade 3 cancer and had a CT scan prior to surgery that showed no masses anywhere else, so don't feel that just because it was in a lymph node, it is necessarily everywhere else.

Chris

 

 

Donswife48
Posts: 326
Joined: Nov 2015

I took a couple of days off to digest all the information I read on these discussion threads.  It seems like many of us are going to have different treatments and I hope that we all have successful outcomes.  I see my doctor on Friday, so he will be able to explain everything better.  I am blessed with having one of the best in our region, so I have a lot of confidence in the center.  They have a team of all the specialties that I will need, from a chaplain, surgeon, chem dr, nutritionalist etc.  I appreciate all your replys and have already learned lots.  Also, I was going stir crazy at home this last week after surgery so I went to work today.  Was able to work a full day, and still feel great.  My co-workers are my family, so I am certainly happy to be back with them.  Thanks to all, and hope tonight everyone who reads this is feeling good.

Fayard's picture
Fayard
Posts: 437
Joined: May 2011

Hola,

I was wondering how was your appointment. Any update?

I had 18 treatments of chemo in six months. One every week for 3 weeks, a week down, and so on.

Hugs!

cindy0519
Posts: 173
Joined: Nov 2015

Hello! Like many others I'm sorry you found your way here but there does seem to be a lot of support and information here.

I relatively new here too.  I was diagnosed with UPSC, Stage 3C1 (one pelvic lymph node of the 27 pelvic and aerotic removed tested positive) in early Oct 2015.   I am currently on doing a "sandwich treatment" consisting of 3 cycles of Carboplatin and Taxol each 21 days apart, then I will have 5 weeks of external pelvic radiation, followed by an additional 3 cycles of Carboplatin and Taxol each 21 days apart.  I go to the infusioncycle numer 2 on Wednesday.

As far as scans go, I had one CT before surgery and have had one since as I had a cyst on my left kidney that they wanted to look at closer to ensure it was a simple cyst.  I asked my oncologist about a PET and she said they are not recommended for UPSC and my insurance would not cover one if she ordered it. Seems odd to me but was something I could live with....for now:)

The best advice I can give you is to talk very frankly with your doctor and get another opinion if they don't want to have such a converstation or just for your own piece of mind.  Being an active participant in your medical care is critical these days.  Ask about your test results, ask questions about your treatment plan, express your point of view, and concerns regarding all of the above.  My medical oncologist said no to radiation prior to surgery too.  After the lymph node came back positive she suggested we "wait to see how chemo goes, and then decide on radiation".  I am a researcher and have done a lot of reading, though there is very limited information regarding UPSC, and it seemed to me that the most agressive approach with the biggest increase in overall survial was this clincial trial (though it is a bit older).  I at least wanted to discuss this approach and why my oncologist didn't recommend it.  She agreed that we only get one shot to get a "cure" or as close to it as we can get.  Anything after this will be reactive to some sort of recurrence. We talked about radiation complications and she insisted that there have been studies that show radition provides no benefit for USPC and comes with a list of potential complications.  I stood my ground wanting to treat this agressively and treat for both systemic and local recurrence possibilities.  She agreed that for me and what I wanted to accomplish - the sandwhich approach makes the most sense.  She aslo asked me to be flexible, if I have any trouble with chemo or if anything comes up that she feels warrants changing the plan that I would at lease hear her out on why she believes a change is necessary.   I am happy with the current plan but am going for a second opinion on Thursday - just for peace of mind if nothing else.

I saw the radiation oncologist on Friday, Dec 4.  She said if I had no lymph node involvement she would not recommend radiation as there would indeed be no benefit.  However she was adamant that with the USPC and a postive node there is indeed benefit in radiation treatment to prevent local recurrance. She said the study my oncologist was referring to simply looked at which was more beneficial to UPSC - radiation or chemo and of course the answer without question is chemo.  She said if I only wanted to do one treatment - she would highly recommend that treatment be chemo and not radiation.  We discussed the risk of radiation ad nauseam and with a great amount of detail stopping to answer my questions or letting me express concern.  She recommended only external pelvic radiation that will be aimed at the area where the infected lymph node and the uterus were.  She said she wouldn't recommend internal radiation as my cervix and vagina were not involved in any manner.  I believe what she is recommending makes sense based on what I have read and what my desires for treatment are.

Another thing to keep in mind is that it seems to me that no two of us are exactly the same.  What works for my USPC might not work at all or as effectively for yours.  We are all individuals and our treatments plans should reflect our individual needs and desires. 

 

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I'm sure most would say "Welcome" but we wish we hadn't met this way - it's a club nobody wants to be a member of but, I guess if you have to belong, we're good people to know!!  I know I have been helped immensely by these wonderful ladies.  I have Stage II, Grade 3 UPSC.  I'm having my third chemo (Taxotere and Carboplatin) tomorrow and then will decide whether to have radiation or not when I'm done with my sixth chemo.  You're right, everyone is different and each doctor comes up with a treatment plan that fits his or her patient.

I hope all goes good on Wednesday!

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

Sorry you are joining this journey but glad you found us!

The beginning of the journey is the hardest part emotionally. You will get your plan and focus on getting it done. That helps you stay strong to deal with the chemo effects.

Please come back with any questions or if you need a place to just vent. The ladies here are wonderfully supportive.

Love and Hugs,

Cindi

cindy0519
Posts: 173
Joined: Nov 2015

Thanks ladies! I have been "lurking" for a few weeks while I got a grasp on where I am, where I'm headed, and what the steps are. 

I have had one chemo cyle (3 weeks ago) and am ready to tackle number two tomorrow morning.

Thanks again for the welcome!  I'm sure I will have a ton or questions and concerns as I move through chemo and radiation.

Cindy

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Hi Cindy! So sorry you need to join our group but glad you found us. I think radiation is a very controversial subject right now. If you read through some of the recent threads you'll see a lot of conversation about this subject. We seem to be moving away from radiation, especially external radiation. Myself, I do not see the point if you doctor was able to remove all visible cancer. The point of chemo is to remove any remaining cancer cells that are floating around. If cancer has spread then radiation can help shrink it but if your surgeon feels that everything was removed, I wouldn't want to risk all the side effects that can occur with radiation. On the other hand, I reluctantly agreed to brachytherapy as I did have cervical involvement. I'm still not sure it was the right decision. Even your radiologist will tell you that there is no evidence that radiation prevents the spread of cancer.

Cindy each of us needs to decide for themselves what treatment plan we will follow and I would never presume to tell you what to do. Just putting in my two cents. I am sure that others can give you great points for doing the radiation. Incidentally, my gyn/onc doesn't recommend the "sandwich" plan either. He feels that breaking up the chemo sessions gives the cancer a chance to regroup and be more resistant to future chemo treatments. I did find his argument persuasive and did all six rounds of chemo before considering radiation.

Sandy

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