UPSC Treatment

willjh, after reading what you wrote I think we had the same type/stage.  UPSC, 1A.  

PART I:  I hope this will answer your question on the type of treatment received for this order: 3 chemo (taxol/carbo - 21 days apart), 25 IMRT external radiation treatments (Mon-Fri), 3 brachytherapy (1 a week), 3 chemo (taxol/carbo - 21 days apart).  I will say I was warned that getting the treatment done on this timeline was going to be tough as the radiation would affect the bone marrow in the hips, because there is a lot there, because you need the white blood count numbers up to complete the chemo)  My 6th and final chemo was delayed one week because my numbers weren't there.  

IMRT is really advanced radiation.  A plan is developed to adjust the amount of radiation given in different areas - less to the bladder or colon to minimize those near and long term side effects.  After the plan is given I received an x-ray before each radiation treatment to 'adjust' where the beam had to go based on where my organs had moved in between.  The radiology technician had told me it can get to within 1/1000th of the same place every time.  

My gyn onc said "this is what the treatment will be" but I met with a radiologist when that time came in the plan and he went in to greater detail and told me I could refuse if I wanted.  

To 'keep the numbers up' I was told to 'push the protien'.  Chemo kind of kills your appetite but I had to force myself to eat meat, nuts, cheese, yogurt...I also had already been taking probiotics prior to all this, which I believe, minimized diarhea during radiation.  If possible, you may want to see if you can meet with a dietician who specializes in helpiing cancer patients.  I really got a better insight in to what 'push the protein' meant.  

The dietician had shared a study with me where half the cervical cancer patients received probiotics and the other half did not.  It was shocking and seemed inhumane.  While graphic, I shared the study with coworkers who began taking probiotics as a result and told me how much better they felt - and they were completely healthy.  The dietician also explained to me that the body sees highly process soy - soy protien isolates - as a hormone, and hormones feed my type of cancer, so I read labels now to avoid this at all costs.

PART II:  I did not seek a second opinion because I was very comfortable with the treatment my gyn onc and his team set in place.  I am sure they would have supported me if I had wanted get one, but you may want to ask what they think about and if it the delay would affect the results.  Reading everything now, I know it is aggressive but I don't think that really means fast growing. 

For me, I wanted to everything I could to beat this and put it in my rear view mirror.  When I met my gyn onc to get a surgery date I asked him, "what are you doing tomorrow?" because I wanted it out that quickly.  I had a hard time wrapping my head around the radiation, and I was told I could always refuse it, but in the end I did it all.  I was diagnosed in April 2012 and just have the regular check ups with a blood draw and pelvic with no problems. 

Please feel free to ask any questions.  I hope I have explained my treatment clearly.  You are not alone.

Willijh,

Glad you found us. It is very confusing when the medical community doesn't agree on the exact approach.

I went to Moffitt in Tampa, FL. I did not get a second opinion because I felt very comfortable with their recommendation. Especially after reading all of the posts from this board.  My gyn/onc worked with my radiologist. They are both at Moffitt.  My gyn/onc set the treatments in motion for both the chemo and radiation.

Here's my story: Diagnosed in May, 2015 at age 58. Hysterectomy July. Started Chemo in Aug. Completed chemo in Dec and had Brachytherapy in January, 2016.

Chemo was a bit different for me than most of the ladies that have posted. My surgeon suggested the standard 6 rounds of carbo/taxol three weeks apart. However, I went to a local oncologist for my chemo and he wanted me to do weekly lower doses instead of the higher every three week doses. So, I did that for the first 6 weeks. That equaled 2 full rounds. I then switched to the higher doses every 3 weeks so that I could have a break in between with more days of feeling better.

My radiation was vaginal brachytherapy only. I had 5 smaller doses instead of the normal 3 larger doses. My radiologist recommended this to minimize damage to the vaginal tissue. I don't know if it made a difference but I can say that I tolerate the dialator without any problems now.

Everyone has to decide their own path to fight this beast. For me, I would do everything exactly the same. I wanted to walk away from this knowing that I did what I could to live a long, healthy life. I am just over 5 months post chemo and 4 months post radiation. Life is slowly getting closer to normal. It does take time to build up our strength after all we put our bodies through.

I hope you find the answers to give you peace of mind for your path forward.

Love and Hugs,

Cindi

Terry, I had  both chemo and radiation but I wanted to tell you that my radiologist said that the first place that UPSC normally recurs is at the vaginal cuff. So, hopefully by getting the radiation you won't have a recurrence.  Also, I read several studies where they said it was "OK" to go into a watch mode with a phase 1A diagnosis. I can understand why you are concerned though. I would be too! However, it sounds like your tumor was contained in the polyp. That is very promising from what I understand.

Love and Hugs,

Cindi

I posted some time ago about a research study on the treatment outcomes for UPSC. There aren't many research studies on UPSC as it is a rare form of uterine cancer. That's part of the reason this cancer is treated like aggressive ovarian cancer. Ovarian cancer is researched a lot.  The standard of care is based on research. If you type in the title of my post- Research study on UPSC- it will bring up my post. Keep in mind that overall survival is impacted by all causes of death and not just death caused by cancer. I was particularly interested in the stats for the 5 year disease free survival for stage 3A, which in this study is 56%. This is an old study, I realize, but the treatment for UPSC hasn't evolved much due to lack of research dollars directed toward finding better treatment. This is not breast cancer we are talking about! There's no "race for the cure."

If you are diagnosed with stage 1, this study suggests that the best outcomes are observed when the woman receives both platinum based chemo and brachytherapy.

Hope this helps,

Cathy

LA123 said:

Treatment of Early UPSC

 

These are a good articles that may help you understand some studies that looked at treatment options/recommendations for patients with early stage UPSC. What I take from them, is that in general, fully surgically staged state 1a UPSC patients benefit from chemotherapy adjuvant treatments (no recurrences in patients with early Stage 1A UPSC that received chemotherapy) vs those who received radiation or were observed, both groups had similar rates of recurrence.  Hopefully you find this useful as you make these important decisions about your treatment.

Regards,

Lucy

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

 

http://news.cancerconnect.com/adjuvant-chemotherapy-for-papillary-serous-carcinoma-may-improve-survival/

Thank you, Lucy.  While a few years older the articles are very good.  You may have posted them previously but I missed them so I am glad I saw them now.

Terry123, below comes from the American Cancer Society site.  Hope this helps:

• Stage IA (T1a, N0, M0): In this earliest form of stage I, the cancer is in the endometrium (inner lining of the uterus) and may have grown from the endometrium less than halfway through the underlying muscle layer of the uterus (the myometrium). It has not spread to lymph nodes or distant sites.
• Stage IB (T1b, N0, M0): The cancer has grown from the endometrium into the myometrium, growing more than halfway through the myometrium. The cancer has not spread beyond the body of the uterus.

If you want to see the entire list here is the link:

http://www.cancer.org/cancer/endometrialcancer/detailedguide/endometrial-uterine-cancer-staging

LA123 said:

Interesting editorial on 25 years of learning about UPSC

I am posting below a quote from an interesting editorial in Gynecologic Oncology which, while is also somewhat dated, (2005) I found useful because it summarizes what researchers have learned over 25 years (1980's to 2005) of treating UPSC. I have a copy of it, so feel free to email me if anyone is interested in its contents.

Uterine papillary serous carcinoma: What have we learned over the past quarter century?

"A challenge with UPSC, as with ovarian cancer, is the likelihood of false negatives from surgical and pathologic sampling during evaluation of the entire peritonealcavity and retroperitoneal nodes. In Stage IA, grade 3 ovarian cancers, chemotherapy has been shown to improve disease-free survival despite the fact that no metastaticdisease is known to be present. Because UPSC is another high-grade cancer that spreads intraabdominally, it may be best to take a similar approach and recommend adjuvant chemotherapy to all women with Stage I UPSC. Future studies, prospective and randomized it is hoped, will need to define the optimal chemotherapy regimen.The results of the Kelley et al. study suggest that the combination of platinum-based chemotherapy and vaginal brachytherapy is currently the most efficacious adjuvant treatment for Stage I UPSC"

 

Barbara A. Goff

 

Gynecologic Oncology 98 (2005) 341–343

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I always wondered how they could REALLY be sure I was 1a at diagnosis, so the false negative remark makes a lot of sense.

My wife is also USPC Stage 1a with no other involvement so we feel very lucky to have caught this hopefully very early. My wife's gyneoncologist said 6 carbo/taxol treatments plus 3 brachytherapy radiation treatments is the current standard treatment for Stage 1a but we did get a second opinion from another respected gyneoncologist who said observation alone could be ok too. 

When we told our primary gyneonc about the second opinion that observation was an option, his comment was "not if she were my wife."  Supposidly if you're Stage 1a and after hysterectomy, there is an 85% to 90% chance if will not reoccur. If you do the chemo and radiation, it raises the odds to 95 to 99% that it won't reoccur.

So its a tough decision either way but we decided to do the standard treatment beause if we didn't and it came back, we would never know if the standard treatment would have stop a reoccurance. My wife's gyneonc was ultimately comfortable with doing 4 chemo treatments given my wife's situation. We just finished chemo and have 2 brachytherapy treatments left to go. 

Take care and hang in there!

Red Corvette

ghorselady, I am so sorry to hear about the loss of your friend and now you having to deal with a diagnosis yourself is the one-two punch.  We all are given a plan and have to make the choices for ourselves if we want chemo, radiation, observation, etc...whatever we feel is best for ourselves.  

If possible can you request a copy of that recent study and share it with us?  I would be very interested in what gyn onc compiled the study and when it was done.  I am so sorry that you have joined this group, but you are welcomed with open arms.

http://www.ncbi.nlm.nih.gov/pubmed/25575483 This is the study I mentioned.  I had to read it several times to understand what my doc was talking about.  Bottom line for me is that with no myometrial invasion and if lymphedectomy was done, radiation and chemo make no difference.  This is really hard because the title makes you think that radiation does make a difference.  As I understand it, 1A includes instances of myometrial invasion.  Therefore,  there are different classes of 1A.  My second opinion doc made a big deal about the noninvasion, and even redid my labs to make sure there was no invasion.  He said if there was invasion, I would need the full treatment.