cisplatin and radiation

My gynecologist oncologist

My gynecologist oncologist said at the beginning I would get chemo, radiation, and brachy. My radiation Dr disagreed with the brachy as my tumor had been high up in the uterus (if that makes sense). All three does talked and decided to skip the brachy and just do chemo and IMRT radiation. I've been lucky and have no issues from the radiation. 

I had a similar issue with my Dr before we switched to Kaiser. I had bleeding and when I told him he said it was normal for a woman my age. I never even thought to mention it when we switched does and insurance until the bleeding suddenly got worse.So frustrating that some drs don't take this seriously.

Feelingalone74 said:

Yes, I agree Barnyardgal, Im

Yes, I agree Barnyardgal, Im sorry you went through a similar issue!  so frustrating when some drs. dont take the irregular bleeding seriously and then us ladies end up in the "boat" were in when if caught early a hysteretomy might have been all that was needed. 

It's also very frustrating when docs dont agree and and he patient with no knowledge of what is right or wormg is left to make the decision. I think I am going to go with my gyno oncologist whom performed the hysterectomy . He said no reason for brachy as where the cancer was found wasnt near the vaignl cuff.I hope I dont regret it down the road but he has been in practice for probably as long as the radioligist is old so one would assume he knows what hes talking about. I will also ask the oncoligist where i am being treated , next week when I see her what she thinks. 

I'm so glad that you had no issues with radiation and hope yoou are well now!

Did you have cisplatin chemo therapy during your radiation?

 

I didn't have cisplatin. When

I didn't have cisplatin. When it turned out that I was too allergic to Taxol to desensitize I was switched to adriamyacin. Typically, they combine cisplatin and adriamyacin, not carboplatin. I had already had carboplatin and wasn't allergic so I asked if I could continue with that and the adria and the docs agreed. I was nervous about the adriamyacin as that can cause heart problems but fortunately no issues.

It was mentioned that I would need a hearing test and kidney check before going ahead with the cisplatin. I ended up having the adriamyacin and carboplatin combo but the Dr did mention that carboplatin could cause hearing loss like cisplatin. 

It was never mentioned about cisplatin and radiation but if that makes things more effective I would certainly consider it.

 

BluebirdOne said:

My two cents...

I am certainly not a doctor, but something bothers me about not getting brachytherapy because the tumor was at the top of the uterus. I was advised to get brachytherapy because recurrence is most likely in the vaginal cuff, internally, and cancer cells do migrate, and we still have most of our vaginal tissue. Surgery gets rid of organs, chemo kills systemically,    but what if some cells are still present in in the vagina?  It was explained to me that chemo individually treats 20%, two chemos means 40%. Radiation gets another fraction. I had a Grade 3 tumor with cancerous polyps. I read a study about brachytherapy in that case to help OS vs. none. (I will try to find that study)  I was 1a, so no external radiation was advised at this time. It just seems rational to me if the number one spot for a recurrence is the vagina to have brachy to reduce the chances of recurrence, regardless of where the tumor was located. It all drains downward and out no matter where the tumor was located. Please correct me if I am mistaken. Also the same docs that pooh pooh the efficacy of using ice to stave off neoropathy also might pooh pooh probiotics. This treatment stuff needs to be more standardized. We want to trust the old timers due to their body of knowledge but then we see that they are closed minded to the newest protocols. It is so frustrating. 

Difference

The difference may be that you have UPCS which has to be treated much more aggressively even when found at an early stage compared to a slower growing hormone driven uterine cancer like endometrial adenocarcinoma.

There have been studies that show brachy ups your odds of NED after treatment in certain scenarios, but it is no guarantee and has the possibility to leave you with issues that can seriously impact the quality of the rest of your life. One's susceptiblity to those risks is likely impacted by what kind of issues you bring with you to the table. A younger, healthier person is probably going to tolerate it better than an older person or one that has other health issues. What has to be weighed is risk (permanent damage) vs. benefit (NED) and considerations of whether or not to "spend" this treatment option in frontline, or "save" it for just in case. The answer is going to be highly personal.

In the case of aggressive uterine cancer types, advanced stage, or low in the uterus origin, it makes sense to "spend" to decrease one's odds of recurrence. A cancer that originates higher up in the fundus has a lower risk of travel to the vagina than when it starts out lower and is a slow growing, less aggessive type or grade. Gravity does not impact the direction of cancer growth, so it is a mistake to visualize it "draining" downward. If that were the case, then there would be a lot of us with advanced stages that would have had lesions in our vaginas at diagnosis. I can't think of anyone here who has said that was noted on their final pathologies.

In the absense of those considerations, one has a reasonable option to "save" that treatment for if it becomes needed later. It's a tough place to be because the risks of either radiation or not having it are not insignificant. A lot depends on the medical advice one recieves and what one can sleep with at night after having made the decision, but I wouldn't say that having radiation should always be a standard part of all frontline treatment. Having one-size-fits-all treatment would be simpler, but there are just too many variables to make that possible. 

zsazsa1 said:

The rad onc I used swore that

The rad onc I used swore that he had designed the tx plan to bathe the vagina in radiation using external beam (which I wasn't too happy about) but he was adamant that this was the best way to do it.  Hope he was right.

 

That’s all we can hope for.

It is another surprise in this journey that there are so many approaches and so many variations of the same disease. I have yet to see a discussion of the effects of hER2 negative status on endometrial cancer. Maybe because it is not important? 

BluebirdOne said:

Thanks, MA bound

I agree with some of your premise but the fact that the many of 1st recurrences occur in the vaginal cuff or vault happen regardless of grade or type suggests that there is some mechanism where cancer cells populate that area after hysterectomy. Of course a UPSC  diagnosis will advise adjuvant therapy.  But having brachytherapy therapy based upon where the tumor was located in the uterus was never discussed with me. The Grade of tumor, not location was the defining factor. Cancer cells did not crawl up the vagina from legs or from toilet paper.  So where do you think they originate from? How do the cells get from the primary tumor to the vagina? You cannot have it both ways, either cells metastasize or they don’t. Vaginal cuff tumors are the 1st to recur, so obviously after surgery, and chemo there are still cells there.  Gravity or something else, the cells travel to the vagina regardless of tumor placement. The only place to originate from is the original tumor also known as metastasis. The entire point of adjuvant therapy is to rid the body of errant cells that originated in the uterus and were not removed by surgery. Systemically and targeted. If you are a stage 3 or 4, any type, does it really matter if the uterine tumor was high or low? Brachytherapy is for cells in the vagina, nothing more. People need to understand that this is the number one place of recurrence, and to get treatment according to their stage and type. Also if you could please cite the study about tumors higher up in the uterus having a lower risk of travel to the vagina let me know. Stage IIIb is defined by vaginal spread AT INITIAL STAGING, so pray tell if there was no migration as you suggest how is anyone staged at Illb and above?  You are suggesting that we have no stage 111b or recurrent cancer in the vagina women?  To make that happen uterine cancer cells had to migrate to the vagina, whether by gravity, mucous, blood, who knows. All treatment requires we weigh our odds and we take our chances, depending upon our dx and our physical tolerance for the short and long term side effects. 

Links

Location of where the tumor originated was probably never discussed with you because it was rendered to lesser importance by the type of uterine cancer you had, but.....it's not the only factor that weighs into whether or not radiation is needed. There is all this variation in pathologies so there there are other considerations such as lymphovascular invasion (LVI), myometrial penetration > 50%, and origin of the tumor to be taken into account in any decision.

Below is the link to the thread where I was going through a similar quandary that I think just about everybody goes through when radiation gets recommmended to them. 

https://csn.cancer.org/node/305795

It was quite a trip down memory lane for me and I cried when I re-read some of the posts from dear ones no longer with us. How I wish they were still here!!

Moekay's post is the one that addresses tumor location, so maybe she still has the study that discusses it; I can't find mine (yet). A year later, I'm still hunting for where I put some things after we moved and I lost a ton of bookmarks when my husband's laptop recently died. My pc was in MA when I was going through treatment in Buffalo, so I was doing most of my research then on his computer.

You may find this hard to believe based on how you visualize how this cancer spreads, but vaginal implantation of endometrial cancer is considered to be rare during early stages of slow growing, hormone driven uterine cancers. It can happen, so there are surgical techniques that are used during hysterectomy to help prevent implantation metastasis, but brachy for patients in those circumstances can be considered safe to reserve for if and when a recurrence happens. 

Location matters because while the cancer is still contained within the uterus, it tends to grow from the site of origin. It metastasizes elsewhere once it gets into the the lymph nodes (lymphatic metastasis) and vascular system (vascular metastasis) which is why early detection makes such a huge difference in survival. Metastasis to the vagina tends to occur from growth in locations nearest to it...the cervix, the neck of the uterus which has less myometrium to penetrate to reach the vagina, and the pelvic lymph nodes once it gets outside of uterus. It can also happen during surgery or procedures done without taking the right precautions (implantation metastasis). It's why we get sent to a gyn oncologist by our gyns at diagnosis. Brachy, in addition to chemo, is considered a form of insurance to increase ones odds of reaching and remaining NED when one has higher odds for a vaginal recurrence. Type of cancer, stage, grade, LVI, myometrial penetration, and site of origin all have to be considered. It's not a guarantee, so one wants to have confidence that it's really needed before taking on the potential risks of permanent impact on one's quality of life that radiation can cause. That's why it can't just be a given for everyone and needs to be a personal, but well-informed choice.

Regarding how cancer gets going: https://www.ncbi.nlm.nih.gov/books/NBK9963/

An interesting case study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4907293/

I had a similar treatment

Quick background. I was originally diagnosed stage 1A grade 1 endometrioid adenocarcinoma. Went two years without an issue. Had a recurrence (a rather large one) on my remaining ovary. I was also diagnosed young at 40. Since it was a recurrence of unknown origin for me and it was stuck to my lower colon, the doctors recommended two phases. 28 rounds of external beam radiation plus cisplatin then phase two was 4 rounds of standard carbo-taxol.

I hate to say it but the radiation+cisplatin was tougher on my body than the carbo-taxol (if you set aside the trauma of losing your hair for the second). Radiation was a breeze for the first two weeks. Once cisplatin was introduced, I was on anti-nausea pills around the clock. Everyone is different though. If you do get nausea, you must get ahead of it. Check to find out if e-mend will be given before your first dose of cisplatin, if not, try to get it. My insurance covered it. There are a lot of anti-nausea pills in your doctor's arsenal. If one combination doesn't work, ask for a different combination. I recall taking mainly two. The one that worked really well for me was Ativan. I also had Zofran and one other. Drink tons of water. Also, a steroids taper worked better for me than having nothing. I did end up with an IV after the second because I was extremely dehydrated no matter how hard I tried to stay hydrated. Having said that, I always felt nauseous but not to the point I couldn't eat nor did I ever need to vomit. I just felt queasy for the rest of treatment and roughly a month after it was done. You'll feel tired, probably lose a little weight and have bowel issues towards the end. I also have permanently darker skin and some other long term effects but it's been two years and I'm about as whole and well as I'll ever feel.

If you're unsure of the brachy therapy, I would ask for a second opinion. Every single percent in my favor mattered enough for me to just throw everything and the kitchen sink at it. But in the end, it's a numbers game with small potential gains statistically. There weren't any guarantees and of course everyone's outcome is unique. You should feel confident about your choice in the end. And don't feel bad about asking why they think you should pursue a particular therapy. 

You'll get through it and good luck!