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Second thoughts

Luckyluke
Posts: 55
Joined: Feb 2019

Went to see radiologist for brachy therapy yesterday found out I'm  not healed all the way from my surgery which was January 16th. Had to get rechecked  by the surgeon  to verify this to be true. She said no brachy  until your healed. I'm  having second thoughts about the pelvic radiation as well. What are the radiating if there are no tumors. There are so many side effects to radiation I would just like to wait and see. I am going to be 70 years old in a few months. Quality  of  life means a lot to me. Seeing the oncologist on Monday going to be bringing this up to him. I have read of recurrence  even after chemo and radiation and no recurrence without radiation. I know it is a what if this and what if that situation. Anyone in my age group faced with  this delimma.

Little Annie
Posts: 20
Joined: Jul 2018

Please take what I say with a grain of salt....I have no medical training and these are very important decisions.   We were even told that radiation did not show any longer survivability than no radiation but both oncologists recommended it.   So after 25 pelvic radiations, I am left with diarrhea, painful sex, and never ending dilations.  I will be 69 this year and wish I had declined the radiation.

Luckyluke
Posts: 55
Joined: Feb 2019

Little Annie I appreciate  your input thank you. When were your treatments  over. I have stage 2 serous and I know this is an aggressive  cancer don't  know if aggressive  means fast growing  or just hard to treat. What type of uterine  cancer  did you have if I may ask. Did you have pelvic radiation  and brachy. I did reread your post and saw you had pelvic radiation. 

MAbound
Posts: 891
Joined: Jun 2016

When you read all of the potential things that can happen as a result of having radiation, it's enough to make you say no way, no how!

I think most of us have struggled when faced with it and there is some really good advice in past threads that can help you decide if it's worth the risk or not in your particulary case. You can only have radiation to an area once, so saving it for if/when a recurrence occurs makes sense. But you need to go back to your pathology report to know if having it makes more sense because you'd be at particular risk due to certain characteristics of your cancer in that report. Those are:

1. Origin of the cancer lower in the uterus (closer to the "neck") rather than higher.

2. Lymphovascular invasion.

3. Myometrial penetration greater than 50%.

I might be missing something, but I can't think of it off of the top of my head. I think I got that definitive advice from MoeKay in a thread called "Still Terrified" back in 2016.

I didn't want to risk the radiation either, but I had cancer that started low around the neck and grew both towards the cervix and up into the fundus. I had Lymphovascular invasion and greater than 70% myometrial penetration in the neck of the uterus which is the thinnest part. Knowing that studies showed those were circumstances where radiation reduces the risk of recurrence tipped the scales in my making the decision to have the radiation. I cried during the first treatment because I was so scared of what I was allowing to be done to me. So far it's been osteopenia in both hips and 6 months of diarrhea 4 and 5 times a day that started around 18 months after treatment. Diet has helped make that manageable if I stay home, so I'm ok with it. I'm hypersensitive to perfume so I'm a bit of a houseplant anyway.

You have a highly aggressive type of uterine cancer, so the inclination of oncologists is to be equally aggressive in going after it. As Eldri says, their focus is to kill the cancer and in their zeal to do so, quality of life can be a lesser concern. It's good that you are thinking about this and I hope that advice I once got helps you with making your decision. 

Donna Faye's picture
Donna Faye
Posts: 272
Joined: Jan 2017

You can read some of my other posts about radiation, especially bracky. I was stage 1 with no sign elsewhere. Was 77 at the time. Had 3 carbotoxol and 4 bracky. 1 year later recurrence on vaginal wall. Had 25 external and 4 more bracky. Now one year later, doing good ; on blood thinners as had clots first go round, so told to use dilator but caused bleeding so stopped that. Still need to be sure I eat right or have some stomach upset, but not bad. Also need to pee often, but all said and done, at 79, doing OK.  I chose to do the bracky because of the aggressiveness.  8 is more than most ever have so you can decide what is best for you.

 

 

DebiR
Posts: 37
Joined: Jul 2014

I was diagnosed with UPSC Stage 3A 5 years ago today.  I always remember because it was 4/11 and I refer to it as my 411/information call.  I participated in the GOG-258 study and decided to let that dictate whether I got radiation or not.  I ended up in the arm that did not get radiation, only the carbo and taxol.  From what I have read from others with the side effects I think I got a lucky draw.

More information about my diagnosis - I had a very small tumor in the upper part of my uterus.  Less than 50% myometrial invasion, microscopic cells in both ovaries and a positive wash.  No lymph node involvement. I was 3A because of the cells found in my ovaries.  I do have pretty significant neuropathy in both feet and a tiny bit in the tips of my fingers.  I take Gabapentin and that does help.

I am coming up on 5 years from the date of my surgery (May 19, 2014) and finished chemo the end of October 2014.  I was 56 at the time.

 

Debi

 

BluebirdOne's picture
BluebirdOne
Posts: 207
Joined: Jul 2018

Debi, Thank you for the information as it shows that not one size fits all. Radiation is the scariest thing because of the side effects down the line. So happy that you checked back in.

Denise 

zsazsa1
Posts: 356
Joined: Oct 2018

I am in the middle of external beam pelvic (IMRT).  I was officially a FIGO Ia mixed serous and clear cell, with the tumor in the upper part of the uterus.  BUT.... I had isolated tumor cells in one of the two sentinel nodes, and they only took those two nodes, just looked at the rest and said they looked okay, didn't sample more.   After the 6 rounds of chemo,  I've had eleven out of a planned 28 treatments thus far.  I just developed acute radiation-induced diarrhea, and I know it's just going to get worse.  After it's over (assuming I get through it all), I know that there is a risk that the enteritis could come back, as chronic, and that there's really no treatment for it.

The medical oncologists said to just do chemo and brachy.  Two different leading radiation oncology centers said to do the IMRT after the chemo.  The reason that I decided to have the radiation therapy is that I'm 57, I have kids who are from 15-22 yrs old, and still need me.  I felt that this treatment gave me my best shot at long term survival.

Serous and clear cell have a very high risk of recurrence, rapid progression, and death.  I felt that if I didn't do the radiation, and it recurred, I would regret it.  So I'm doing it.  But who knows if I'll manage to get all the way through it!

MoeKay
Posts: 220
Joined: Feb 2004

Hi Luckyluke, why did your treatment team tell you that you needed the radiation?  MABound listed most of my risk factors for recurrence in her above post.  I had a tumor that arose in the lower uterine segment, extensive lymphvascular space invasion (LVSI), and a tumor that had invaded approximately 80% of the thickness of the myometrium.  My tumor was also considered fairly large, approximately 4 cm., and it was grade 2.  I'm about your age now, but was 51 at the time of diagnosis and 52 when I finished treatment.  I'm coming up on the 20th anniversary of my diagnosis later this month.  If I were making the choice now, given the same risk factors, I would do it all again in a heartbeat.  No one wants to get radiation if they don't need it, so have your doctors confirm for you why they are prescribing it.  I've heard comments along the lines of "I can just get it later if I recur."  However, reading the studies carefully, it does not appear that things are that simple and certain at-risk subgroups did appear to have a survival benefit from adjuvant radiation after surgery in some of the studies I've reviewed. 

Nobody can make the decision for you, and everyone has the right to refuse any and all treatment if they want to, but I would recommend that you base your decision on knowledge, rather than fear. 

Wishing you all the best. 

MoeKay

Luckyluke
Posts: 55
Joined: Feb 2019

They the Dr are being aggressive because it is serous.  They sampled  well over 50 some lympnodes and all were negative the pelvic wash was negative. The pathology  report read tumor invades 8percent of the myometrial thickness. 0.1cm invasion.  No lymphvascular invasion is identified. Tumor size 2.4cm myometrial  invasion 1mm. The gun surgeon said after surgery  we had a very good outcome with the surgery and she wants to be aggressive  with the treatment. I do understand  what she is saying  but I'm  looking  at my age and quality of the rest of my life.

zsazsa1
Posts: 356
Joined: Oct 2018

I don't understand.  It sounds as if you were serous Ia.  The standard for that is chemo x 6, followed by brachy.  It took my cuff about 4 months to heal, because of chemo - that's pretty common for it to take a while to heal.  But I don't understand why they are talking pelvic radiation for you, instead of just brachy, if you were truly a Ia with no LVSI.

janaes
Posts: 783
Joined: May 2016

Here is my story. I am a lot younger. I was 42 when i was diagnosed with MMMt uterine cancer stage 2 grade 3. Mine is a different kind of uterine cancer but is still known to be agresive. I was faced with a tough decision about radiation not so much for quality of life although that was important. This uterine cancer was my second cancer and was told the radiation i was given for my first cancer caused my uterine cancer. I had radiation at the time right above were i would need to do radiaton for my uterin cancer. My radiation doctor would not do external radiation for that reason. It took time and even considered seeing a different doctor about that. I didnt but not only because if what the doctor said but also because i didnt want more radiation that could cause cancer like my first cancer did. Over time i figured i could get cancer with radiation and could get it without radiation. It didnt make sence to do it for me.  I dont want my cancer to come back. I hope it doesnt. It has been almost 3 years since my diagnosis. So far i have been NED. If i does come back i wont like it im sure but at the same time i wont regret my desision. I am only 46 and do need a good quality of life

By the way i did do bracytherapy. Noe external radiation. I have had no side effects to thw bracytherapy. It wa a piece of cake for me.

Good luck in your dession

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I also had Stage II serous and my oncologist/gynecologist recommended no radiation, just chemo. He said he was saving radiation for a recurrence and that current stats showed there wasn't much difference in recurrence rates in Stage II whether you had radiation or not. I don't know if that was right or wrong but I'm almost four years NED from this beast. And, I only made it through three chemos. 

Good luck!!

Love,

Eldri

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2613
Joined: Mar 2013

My two cents:  I think it just goes to show that there is no one standard of care, however, I stand on the shoulders of those participated in clinical trials. I was UPSC, Stage 1A, had the 3 chemo, radiation: both IMRT and 3 brachy, then 3 more chemo.  We all need to decide what is best for ourselves and we are all, certainly, different. 

zsazsa1
Posts: 356
Joined: Oct 2018

How's your gut function?  I don't know if I can stand the diarrhea.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2613
Joined: Mar 2013

I took probiotics pre, during, and post radiation (still do today).  I did have some diarrhea at the beginning of the IMRT radiation, but it did lesson for some reason.  I was prepared to go with the BRAT diet, but I would have probably eaten 'binding' foods for me.  I think I was very fortuate, I know I read things online that completely freaked me out.  I am sorry you are having such issues.  

Do you take probiotics?  The dietician I saw pre-radiation had shared a slide deck from a presentation that showed women being treated for cervical cancer with radiation, and the dramatic effects probiotics had on their bodies.  Of the 63 women in the study, (31 placebo, 32 probiotic) the probiotic group had dramatic results.  (Please forgive me for the graphic explanation below)  Note:  all women experience diarrhea.

                                              Probiotic Group                    Placebo Group

Prevalence of formed stool               3%                                     0%

Prevalence of soft stool                    78%                                   35%

Prevalence of liquid stool                   19%                                  65%

Needed Anti-diarrheal medicine          9%                                    32%

The probiotics they were using in the study ws 1 billion CFUs each of lactobacillus acidophilus and bifidobacterium bifidum.  

Again, I apologize to all you ladies for being so graphic, but it really was a fascinating (if not cruel) study.  

Luckyluke
Posts: 55
Joined: Feb 2019

Thank you all for your  input  and I appreciate  all the information.  I have never taken any probiotics.  I'm always regular with my bowl movements and rarely  suffer constipation  except a few times during the chemo.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2613
Joined: Mar 2013

zaazsa, please see my response above

Sunrise19
Posts: 20
Joined: Apr 2019

Hello All! This is my first post. My diagnosis was Uterine Serous Cell, Stage 1a, Grade 3, which was determined after surgery. Guess I was in denial before surgery but thought I was done since Stage 1a. I was shocked when they came back with the treatment plan of 3 brachy radiations, 6 chemo consisting of Paclitaxel & Carboplatin, Benedryl, a steroid and a pepsid type med, all in a 4-5 hour IV every 3 weeks(for 6 treatments). After reading the posts, guess this is one of the protocol treatments used for this dignosis as well as Ovarian cancer. 

So back to your post Luckyluke, I found that while having the brachy was ok, I'm not completely healed even though 2 months out, but the effects so far for me, are much less than the chemo. Yes, I am thinking of quality of life with less hearing, tinnitus, and neuropathy (mild right now). Good thoughts for you Luckluke!

And, I agree, each woman must make their own choice based on how they feel. So now, I've had my 3rd chemo and am having tennitus, some hearing loss and mild neuropathy. Trying to decide if the next 3 treatments are worth the worsening side effects. Neulasta was added last month for low white cell and that brought flu like symtons for a week. Will meet with the oncologist for questions on the day of my next chemo, next Wednesday. Wish the doctor would discuss by phone, to give me time to weigh options. My best friend, and now the hospital team referred me to this site forum and wow, I'm grateful to have this group to chat with.  

Now, perhaps I need to start a new topic on 3 month chemo treatment vs 6month chemo treatment? And as new to the forum, is there a specific place to post? I've just jumped in, but can relate to many of the topics and posts. Each day is a new one and I'm glad to see each sunrise!

Forherself's picture
Forherself
Posts: 241
Joined: Jan 2019

Welcome to the place we all have found so helpful.    I suspect you would have a lot more responses if you begin your own post saying you are a newbie.  Everyone will read it then.  Ask your question.  There are lots of women here with experience that will be valuable to you.  

Sunrise19
Posts: 20
Joined: Apr 2019

Will do. Thanks

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