WHY brachytherapy as WELL as external pelvic radiation?

RoseyR

Dear All,

Diagnosed with stage IB uterine cancer six months ago, I was originally told I'd need "sandwich treatment:

three rounds of carbo/taxol;
25 sessions of IMRT pelvic radiation sessions;
three brachytherapy treatments
three final rounds of carbo/taxol.

Three weeks through the pelvic radiation (with no adverse reactions so far), my radiological oncologist said last week, "I'm not sure you'll really need brachytherapy; there was no cervical involvement ..."

WHAT?

Why would thre be a sudden change of mind about my prescribed course of treatment?

Although it was stage IB, with 18 clear pelvic lymph node samplings, my tumor is rare and agressive (carcinosarcoma, formerly known as MMMT) and although it didn't reach my cervix, it was large (6.0 centimeters) and low in the uterus, with sixty percent myometrial invasion.

Three second opinions all agreed on the chemo regimen.

But they disagreed on the radiation protocols. One questioned why IMRT pelvic radiation when my lymph nodes were clear.

Most agreed that I needed at least brachytherapy since vaginal vault recurrence is such a threat.

Yet now my onc tells me that external pelvic radiation is nearly as effective as brachytherapy in preventing vaginal vault recurrence and MORE effective at preventing pelvic recurrence..

I do NOT look forward to brachyterhapy and the need to use a dilator every night for the rest of my life (which I'll have to as I am single again and have been celibate for a few years.)

But saving my life is more important--so I need to know whether all of you who had brachytherapy had tumors that extended beyond your uterus to invade your cervix.

Any advice would be appreciated because I now have a new decision to make within two weeks

Gratefully,
Rosey R

lkchapman

Hi Rosey,
The about face seems strange to me too. It seems it would be the other way around, that they would choose only brachytherapy and forgo pelvic, given your early stage disease. I had both pelvic and brachy and my cancer was no where near my cervix. I really don't know what your doctor is thinking. It seems to be going against current treatment protocol.
Perplexed,
Laura

Kaleena

lkchapman said:

Hi Rosey,
The about face seems strange to me too. It seems it would be the other way around, that they would choose only brachytherapy and forgo pelvic, given your early stage disease. I had both pelvic and brachy and my cancer was no where near my cervix. I really don't know what your doctor is thinking. It seems to be going against current treatment protocol.
Perplexed,
Laura

Hi Rosey:
I was the
Hi Rosey:

I was the opposite. At first they told my no radiation whatsoever, then I was advised to get pelvic and brachy. MY radiation oncologist was against the pelvic because of all of my scarring issues and he felt that the risks of pelvic outweigh the benefits. Because he said that I would develope more scarring which I didn't need. I ended up with just 3 brachy treatments.

My best to you,

Kathy

Northwoodsgirl

Rosey
I had 2B endometrial cancer which had progressed to my cervix. I had the same sandwich protocol with the 25 external and 3 brachytherapy. If I were you I would do the brachytherapy. The first "fitting" session is the most difficult. Cancer is such an unpredicatable disease in some ways that I would not want to take a chance. You said something like the doctor said "nearly or usually or typically" but that is not always so I would go for the brachtherapy just in case. Using the dilator is no big deal-just work it into your routine. There is only one you!!!
Lori

RoseyR

Kaleena said:

Hi Rosey:
I was the
Hi Rosey:

I was the opposite. At first they told my no radiation whatsoever, then I was advised to get pelvic and brachy. MY radiation oncologist was against the pelvic because of all of my scarring issues and he felt that the risks of pelvic outweigh the benefits. Because he said that I would develope more scarring which I didn't need. I ended up with just 3 brachy treatments.

My best to you,

Kathy

Two Second Opinions Advocated just Brachtherapy

Thanks, Kathy, for your response.

I had four opinions from prominent oncologists:

Two (including my current radiological oncologist) recommended both pelvic and brachtherapy.

Another two recommended just brachytherapy, one because "your pelvic lymph nodes were clear" (only 18 were sampled, however), one because "the PORTEC trials show it's just as effective as pelvic radiation with fewer side effects."

But then my onc said that the PORTEC trials were NOT for women with uterine carcinosarcoma, but for grade 3 tumors in early stages.

What NOBODY recommended was just pelvic radiaiton.

So I need to pin down my rad. onc. to find out why, suddenly, she is recommending that I stop with the pelvic radiation. (I am having no side effects at all after 16 of 25 treatments. But my hemoglobin is low-down to 9.9. Maybe that is the reason.

May I ask the type and stage of your tumor at diagnosis? And NOBODY mentioned "scarring" as a danger of pelvic radiation. Good lord, that sounds terrible; all I was warned about were urinary and bowel frequency and urinary burning ...

Appreciatively,
Rosey

RoseyR

Northwoodsgirl said:

Rosey
I had 2B endometrial cancer which had progressed to my cervix. I had the same sandwich protocol with the 25 external and 3 brachytherapy. If I were you I would do the brachytherapy. The first "fitting" session is the most difficult. Cancer is such an unpredicatable disease in some ways that I would not want to take a chance. You said something like the doctor said "nearly or usually or typically" but that is not always so I would go for the brachtherapy just in case. Using the dilator is no big deal-just work it into your routine. There is only one you!!!
Lori

Thanks for Advice

Lori,

I really appreciate your advice; you're probably right; better to be safe than sorry. I do NOT want vaginal vault recurrence within a year or two!

Thanks,
Rosey

Kaleena

RoseyR said:

Two Second Opinions Advocated just Brachtherapy

Thanks, Kathy, for your response.

I had four opinions from prominent oncologists:

Two (including my current radiological oncologist) recommended both pelvic and brachtherapy.

Another two recommended just brachytherapy, one because "your pelvic lymph nodes were clear" (only 18 were sampled, however), one because "the PORTEC trials show it's just as effective as pelvic radiation with fewer side effects."

But then my onc said that the PORTEC trials were NOT for women with uterine carcinosarcoma, but for grade 3 tumors in early stages.

What NOBODY recommended was just pelvic radiaiton.

So I need to pin down my rad. onc. to find out why, suddenly, she is recommending that I stop with the pelvic radiation. (I am having no side effects at all after 16 of 25 treatments. But my hemoglobin is low-down to 9.9. Maybe that is the reason.

May I ask the type and stage of your tumor at diagnosis? And NOBODY mentioned "scarring" as a danger of pelvic radiation. Good lord, that sounds terrible; all I was warned about were urinary and bowel frequency and urinary burning ...

Appreciatively,
Rosey

Stage and Grade
Hi Rosey:

I was diagnosed with endometrial adencarcinoma. Grade 2, stage ii/iiia. All washings were clear and nymphs were clear.

I hope you get an answer soon.

Kathy