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My thoughts about chemo and radiation

Ribbons's picture
Ribbons
Posts: 79
Joined: Jan 2019

First of all I had stage 1A Grade 3 cancer, and it was clear cell. Rare and scary. I was diagnosed after some spotting led to further testing. I had an ultrasound and then a biopsy. Yes, the biopsy hurt pretty bad! Then had robot assisted hysterectomy with all the other stuff taken out also, and 22 lymph nodes which were clear. I am now 3 years cancer free and 2 years 5 months from my last chemo. I had 6 rounds of carbo/taxol, and then 3 brachytherapy treatments. In my opinion, I would choose chemo over that radiation. I have a real fear of any radiation and I only agreed to the brachytherapy because of my rare cancer. I still wish I had not done that but there are always the "what ifs." My Mom died from breast cancer when I was 13, so it was a long time ago since I am now 69. She had all kinds of experimental treatments and extensive radiation which caused her much pain and damage. My Dad had prostate cancer and he died at age 83, but he had extensive radiation before that to try to stop the cancer from spreading and it caused a lot of damage. I feel he would have lived longer with less complcations if he had not had radiation. So that is whre I get my fears of radiation. The chemo was doable although I almost did not go for round 6.  I feel like the chemo made my fibromyalgia and hip arthritis a little worse, but the brachytherapy has left me with a lot of scarring and the hated dilator has not helped much. I don't know if we are allowed to give recommendations for treatment locations or Drs. I live in Oregon and I would be thrilled to recomend both of those if anyone is in my area. Also I feel so bad for the people who have had to go throgh chemo during Covid. When I went, I could have visitors and everyone else in there had visitors and it was like a little community on treatment days. During Covid, the people are all alone except for the amazing chemo nurses. This is a long and rambling post, but I hardly ever say anything on here and just felt like I needed to share.

MAbound
Posts: 1150
Joined: Jun 2016

It's always good of you to pop in on occasion to give us an up-date because otherwise we're just left to wonder, so thanks for that.

I can appreciate how you feel about radiation. We never told my dad I had cancer (he was 92) because of how traumatized he was by his mom having it for breast cancer when he was 13 in 1939. He's convinced that it killed her faster and with so much more pain than the cancer itself would have done and he was probably right. Treatment has come a long way since then and was a lot easier for me (I had external, so no dialator). I think it was good we didn't bring back those worries for him again. He died a few weeks after I finished radiation, so all of our final conversations were positive. 

While I too favor chemo over radiation, this board helped me a lot to understand the circumstances for when it would actually be the better decision to go ahead and have it when it's recommended. That has saved me a lot of worry and sleepless nights these past five years and we all know how much that matters! The potential impacts on our lives afterward can seem a high price to pay, but they still beat the alternative. It just helps to know when to save it for recurrence vs. using it for preventing that.

I just had my right hip replaced last week and if the arthritis is an issue for you, I'd say don't be afraid to have it replaced. It's still considered major surgery, but it's really a piece of cake how they do it these days. It's just an overnight stay and often you can actually go home the same day depending if they have time to send you to PT or OT first. The biggest deal is that you need someone to help you a bit at home and with driving to appointments for a couple of weeks. I've had very little discomfort from it, so it's already a big improvement over what had me pretty disabled this past year.

Again, so nice to hear how you are doing. Your comment about your biopsy experience is also helpful to add to the knowledge base here.

 

txtrisha55's picture
txtrisha55
Posts: 696
Joined: Apr 2011

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

MAbound
Posts: 1150
Joined: Jun 2016

I remember you getting your butterfy for your 5 year anniversary.  Are you going to get another for your 10th? 

txtrisha55's picture
txtrisha55
Posts: 696
Joined: Apr 2011

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.

Harmanygroves's picture
Harmanygroves
Posts: 216
Joined: Jun 2021

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."

ConnieSW
Posts: 1570
Joined: Jun 2012

That is awesome!  Way to go!

Farrah786's picture
Farrah786
Posts: 1
Joined: Jul 2021

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. 

Harmanygroves's picture
Harmanygroves
Posts: 216
Joined: Jun 2021

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. 

cmb's picture
cmb
Posts: 723
Joined: Jan 2018

Farrah786,

I'm sorry you had to find this site but as Harmanygroves said, we're here to help. It's understandable to feel that chemo and/or radiation don't work when a family member or friend passes away from cancer, despite their treatment. My father died of complications from colon cancer. And my mother struggled with cervical cancer for several years with different chemos and surgeries.

But in my mother's case, a new chemo drug finally put her in remission after other chemos had failed to keep the cancer away. And while there have been women on this board who did not survive their cancer, there are others for whom chemo and/or radiation has worked to keep them cancer-free for many years.

Cancer treatments do have side effects, but these aren't the same for everyone. Some women have a harder time than others, but usually treatments can be adjusted if serious problems occur.

Chemo is usually given before radiation, although some women have what is called the "sandwich" treatment where they receive chemo for a few cycles, then radiation, followed by chemo again. Chemo treats the cancer cells systemically throughout the body, whereas radiation only targets a specific area. Generally, doctors will prescribe chemo even in the early stages for grade 3 cancer like Serous. This may or may not be followed by radiation, depending upon the pathology after surgery.

Genetic mutations like BRCA or the Lynch Syndrome that I, like others here, have do increase the possibility of developing cancer. All we can do is be vigilant in following the recommended screening tests and acting promptly when we notice something is off in our bodies.

Getting treatment during this pandemic can be harder than it usually is, but be persistent in pushing to move the process along. This isn't a cancer that you want to leave untreated for any length of time.

Please come back to ask any questions you have. Our experiences have varied, so you'll get different viewpoints from other here.

RainbowRita's picture
RainbowRita
Posts: 49
Joined: May 2021

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 14th, 2020 and my first chemo on February 4th. 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. :-)

 

MoeKay
Posts: 347
Joined: Feb 2004

I'm very sorry to hear about your Mom's ovarian cancer diagnosis and untimely passing.  I know you said that you truly don't believe that chemo and radiation work.  Since I had both surgery and radiation in 1999, I cannot say with certainty what impact my radiation had on my favorable outcome following treatment.  Perhaps I would not have recurred for 22 years without the radiation, despite having multiple poor prognostic factors increasing the risk of recurrence.

However, I can say that in 1976, my mother was diagnosed with cervical cancer that was too advanced for surgery.  Her only treatment was internal and external radiation.  Her radiation oncologist advised me at the time that her chances that the radiation would work were 50/50.  Since then, chemoradiation has become standard of care for some cases of cervical cancer, but chemo was not used at the time she was treated.  My mother's cervical cancer never recurred after treatment, and the radiation did not result in major side effects.  She passed away almost two decades after completing radiation treatments from other causes.  So in my mother's case, I would respectfully have to take issue with your statement that radiation doesn't work. 

I know this great group of women on this board will make every effort to answer any and all questions you have, so ask away!

Wishing you the best.

MAbound
Posts: 1150
Joined: Jun 2016

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. 

Lyn70
Posts: 56
Joined: Jan 2021

I was diagnosed with stage IIIA endometrial adenocarcinoma and the oncologist ob recommend the 6 rounds of carbo/taxol. He indicated I would require some radiation. He thought about 4 weeks. I, too, as very fearful of radiation. My Mother died of Melanoma at age 33. I was 3 and have no recollection of her. My Father said the radiation treatment she received hastened her death. My Father has since passed but his words stuck with me. It was the reduced statistics of a pelvic reoccurence and a very kind radiologist that got me thru the 28 days external and 1 brachy thus far. Looking back is easy, weeks 5 and 6 were not. I still have some incontinence issues I am addressing with pelvic floor therapy.

I applaud your 5 Year NED milestone and hope to celebrate the same one day. 

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