My thoughts about chemo and radiation

When I was DX with uterine cancer is was Stage 3c1 Grade 3 carcinomasarcoma back in 2011. My gyn onc gave me a choice...1) join a trial for the carbo/taxol or Ifosomede (?) or just go with the carbo/taxol.  She gave me all the paperwork to read so I could make an informed decision. I read it all plus looked it up on the NCI web page abouit what the test would be as it was ongoing.  Next appt I told her I did not want to take the Ifosomede but asked what would she recommend the trial or just take the carbo/taxol. She said just do the carbo/taxol.  So 6 rounds of chemo treatments.  She said no radiation unless I did not respond to the chemo and had a recurrance.  On this website many of the ladies had both chemo and radiation.  There were many times I guestioned my dr why I did not get the radiation, I thought I needed it, she just recommended chemo first, then wait to see if I had a recurrance then we could use radiation.  So I had 6 rounds of chemo, no radiation and had no recurrance. Just had my 10 year check up and I am still clear.  Aug 22 is my offical anniversary as it was the date of my last chemo treatment.  So I cannot say I would still be here if I had received radiaiton or not but just receiving the chemo was good enough to keep me here still today.

trish

That is awesome!  Way to go!

txtrisha55 said:

Tattoo

I will be getting another 5 year mark done.  Just not sure if I should have the ribbon touched up for it to be peachy again.

Was not a big fan off getting it the first time cause I do not like neddles nor pain BUT this to me was a big enough event to get it done. 

My daughter was very upset that I went by myself to get it done.  Cause she wanted to add to her collection of tattoos.  She did go to the guy that did mine and got her one a giraffe with butterfly wings on its back.  Wings are like mine but blue and the giraffe for, my mom, her grandmother who passed away from cancer in 1992 when my daughter was 7 years old.

I would. You will already be there. Color it up a bit! Add another V, and btw, I don't think I'll ever be over waiting for the other shoe to drop, but as someone in here (one of the brilliant departed ladies) mentioned to someone, I'm not going to die today. One day at a time. As in Game of Thrones, "Not today."

Farrah786 said:

My mom passed away of Ovarion

My mom passed away of Ovarion Cancer when I was 20. She was 48. I had Braca 1 positive so elected for a hysterectomy at 57. Biopsy of my uterus showed Serous Carceroma Grade 3. So I joined as there are so many questions in the land of the unknown and very few answers. Time seems to be running out between waiting to see doctors. I'm not a fan of Chemo and Radiation and truly don't believe it works but as Insurance only covers this treatment in the Pharma world I'm stuck with it. It breaks down strong people and I am truly not looking forward to the surgical staging and the Chemo thereafter. Question should there not be radiation to the abdomen after a laparotomy prior to Chemo? Every step I have questions. 

You have arrived at the right place, and I'm so sorry about your mom, and also sorry to hear that you have received a diagnosis of Serous Carcenoma grade 3. There are many brilliant women here with the same diagnosis, and although I have a different type of cancer (I have endometrioid adenocarcinoma), I know that I'm sorry you have to be here, but am glad to help support you. I know that they never move fast enough.

Sending you well wishes, and lots of love. 

CMB has posted an FAQ up at the top of this page, and one of the things you can do is have a look through that. There is a lot of information, and also information about "how" to search effectively. This site really is a compilation of a lot of knowledge and experience. Learning and researching can be frightening and daunting. If I could give you my best advice, it would be to doggedly work at getting the very BEST medical help. If you're not a good fit with your doctor or medical team, get a different one. Choose wisely. It could be a long relationship, and you want it to be good.

Take care. 

Farrah786, are you saying you don't believe that either Chemo or Radiation works? Or are you saying you don't believe radiation works since earlier discussions were about radiation?

After a lot of researching, I've found that there is not a "one size fits all" treatment plan in regards to whether a person gets chemo and radiation even with similar diagnosis a between people. What I received was 3 cycles of chemo, then 25 external beam radiation treatments + 3 internal (brachytherapy) treatments and then 3 final cycles of chemo, known as "sandwich therapy" and it has been a long process. I had a modified radical hysterectomy on December 14^th, 2020 and my first chemo on February 4^th. My diagnosis by the way, was Grade 1, Stage IIIB endometrial cancer. Next week Thursday I go in for what will hopefully be my final chemo infusion. I had a few delays with the last chemo cycle due to low blood counts of platelets and neutrophils. So although I can’t speak to you as to long term side effects of either chemo or radiation, I can tell you about my experiences with immediate side effects as I’ve had both chemo and radiation.

Like you, I had a lot of concerns about potential side effects from chemo and radiation. I had a friend who had been diagnosed with endometrial cancer when she was only in her 40’s. She received a similar treatment plan to me – radiation and chemo. Not sure of the specifics as that was quite awhile ago. I only had sentinel lymph nodes removed, 5 total. She had many more nodes removed than I as that was pretty typical back then. She ended up getting significant lymphedema as a result. However, she has had NO reoccurrences and is now 62 years old. So yes, her treatments did CURE her. :-) I was focusing on the radiation therapy’s potential side effects and worrying about that, but forgot about the most important thing…she’s still here today.  I am not “out of the woods” yet in regards to possible lymphedema, but so far have not seen evidence of that. Making sure you get adequate exercise and not carrying excess weight is supposed lessen the risk of that, as is not getting so many lymph nodes removed. 

I had some issues with diarrhea during the external beam radiation, but it resolved once I was finished with treatments. I had no real issues from the brachytherapy, not yet at least. So all in all, radiation treatments (aside from some fatigue that improved once I was finished with radiation), I tolerated radiation therapy quite well.

The thing to remember is that even though many side effects are common, it doesn’t necessarily mean you will get them. You certainly aren’t likely to get all of them, and most are short-term. We all tend to go to that “worst case scenario” I think when first start learning about side-effects. I can’t speak for others, or even what is “most common”. I can only say that I found radiation (both versions) and chemo therapies to be a lot less arduous than I expected. I am a “plan for the worst, be pleasantly surprised when it goes well” kind of person. And I am happy to report that I am feeling pretty darn good these days and looking forward to having “cancer treatments” in my rear view mirror. So even though chemo and radiation are not the most pleasant things to endure, they are “do-able” and you CAN have good results. I will be forever grateful to the wit and wisdom coming from the women on this discussion board. I really don’t think I’d be in as good of a place emotionally if I hadn’t found this site. So hang in, you too can “do this” and make it through to the other side. :-)

Farrah, I'm so sorry that you needed to come here, especially after having what sounds like it was supposed to have been a profolactic hysterectomy only to show that you already had a high grade cancer. Of all the dumb luck! 

As far as your question about the need for radiation after laparotomy before chemo, I would say "not necessarily". Different doctors have different philosophies of practice and so they while most follow a standard of care for different types and stages of cancer, there is leeway to individualize care to suit an individual's particular circumstances. For instance, unlike many, my gyn oncologist stayed away from the sandwich regimen and instead held radiation until after I finished chemo. He believes that radiation damages blood vessels where you most want chemo to get to and so wanted chemo delivered in its entirety first. He was an older school oncologist and med school instructor and had the experience and confidence to go outside standard practice when he felt it would be the most effective. Other doctors try to stay more strictly within the bounds defined by current standard of care. I'm still here (stage 3a, grade 3) almost 5 years NED, so I guess he knew what he was about.

It is critically important that you have a gyn oncologist that you trust and who will answer all of your many questions because you will be having so many decisions to make as you go through this. We can help, but ultimately you have to feel confident in the oncologist who has your life in his/her hands. Whenever you have doubts, be sure to go for 2nd and even 3rd opinions because there is no such thing as a doctor who knows everything about everything.

While nobody ever wants this diagnosis or to go through treatment, the science for treating uterine cancer and making that treatment easier for most to get through has come a long way since your mom's experience with it. It's doable, especially if your cancer was caught at an early stage because you had your hysterectomy when you did. That's what I'm praying will be the result of your staging surgery. Just keep in mind that front line treatment is your best chance for a cure and is the time to throw the kitchen sink at this for a favorable outcome. Recurrences are treatable, but not considered curable. It's a scary place to be right now, but you won't regret doing what has to be done to be where you had thought you were going to be when you had your hysterectomy.