PLEASE TELL ME . . .

I just got the "wonderful" news that I have a lesion that was not found in a cold knife cone biopsy that I had done back in March of this year !!!!

Although I recovered from that surgery amazingly well...I  thought I'd be out of the woods, except for 3 to 6 months check ups !!  Boy, was I wrong.  The news I got this past week was that I either have to have a RADICAL HYSTORECTOMY, (no thanks) or SEVERE RADIATION and CHEMO !!??

 This lesion that they "forgot" it no larger than the end of a pencil point !!  If I go with radiation, I will have 5 external treatments, 5 internal treatments (that will involve me being put out, each time) and then 5 sessions of chemo. 

Has anyone done this, or even something close to it??   I am scared to death, ever since this whole issue started back in December '08 with just a normal check up.

 I am still freaked out by this whole ordeal?????!!!!!!!!

PLEASE !!!  Will someone respond and tell me what is going on?  If these are the only options to curing this situation....Would you tell me what happened and how you got through all of this?????

I'm sorry that you are having to go through this.  It is decidely unpleasant and you have some big decisions to make.  I am glad, however, that they did find the lesion and that you are going to take some action. 

A radical hysterectomy isn't any picnic nor is the radiation and chemotherapy option.  If I were you, I'd do the hysterectomy because, if there is ever a recurrence, you could still have the radiation/chemo treatment.  If you go with the radiation as the first treatment, in the event of a recurrence, your options are much more limited.  Your body can take only so much radiation and the doctors would only be able to manage your cancer, not cure it at that point. 

The hysterectomy wasn't an option in my case, so I was stuck with the external (5 times a week for about 7 weeks) and internal radiation therapy with five treatments of low dose chemotherapy as an enhancer for the radiation.  Luckily I tolerated the treatment fairly well, but it was a fulltime job for about 8 weeks for me!  If you do decide to go for the radiation, try to go to a hospital that is a well-known cancer facility and has the medical equipment to do the internal radiation on an out-patient basis.  I had five internal radiation treatments (during the course of three weeks); the hospital I was at had the very expensive machine that delivers the internal radiation by robot (I think....I was under general anesthesia) and, after four or five hours, I was in the recovery room and ready to go home.  Without that specialized equipment, the other alternative is for the doctors to place radioactive rods into you, you stay in the hospital for 2-3 days each time, you can't move around, you aren't able to walk around or even have people visit (because of the radiation) and I was so relieved that I didn't have to deal with that aspect of the treatment.

Anyway, hope this was a little bit helpful.  I have a feeling that you'll manage just fine.  Good luck.  You can send me a private message if you want to.

Hey Sydsmom:  Thanks for the reply.  It helps just to hear someone else has gone through what I have to do.  WOW !

I am going for radiation, due to my severe asthma. I also have a boat-load of allergies to most pain meds.....After my cold knife/ cone and D&C surgery, the only pain meds I could take was Tylenol 3's.  I can't imagine having my stomach opened from below my rib cage to above my pubic bone, and most of my insides taken out - and then cutting the pain with only Tylenol 3's!!??????  YIKES!!!!!

Pain also makes me vomit violently.....amazing I gave birth to 3 children, huh?!   But, throwing up after stomach surgery is not something I would like to do......plus the fact of staying in Intensive Care for 5 to 6 days....My insurance company is starting to wonder now.....and I have 15 weeks of this left to do !!!!

Radiation is scary, but my only other option.  I can have the external here in my home town.  However, I have to return to the University Hospital & Clinic to do the internal....as no one has the facilities to do it here !!  They did tell me I would be put under (oh boy I hate that) and then allowed to go back home the same day.  I live an hour and a half from Iowa City !!  Could you ride that far in a car????  Could you sit down after the internals, or did you have to stay in bed???????

I am scarred to death about Chemo...and most confused.  One Dr. says YES the other one says NO!  Now I don't know who to believe???  I am afraid that during the course of that, I won't be able to teach school...because of the kids....and me left with NO immune system.  Catching a cold would be disastrous  !!  If I don't teach, the school district won't pay my health insurance.....What a deal, huh??????

The Dr's in Iowa City say if I do this, I will have an 87% to 95% cure rate......because they caught it so quickly!!?????

I look good, and feel terrific right now.  I cry at night thinking I will never be the same.  Also, my kids are grown, and my boyfriend of 6 years, decided to take an extended leave of absence due to the stress of all this....Yeah, I know, what a jerk, huh????

I try to keep my chin up and tell my self I will "kick ass" by doing this.  I want to just be on the right side of life again, because where I am right now, just plain SUCKS !!!!!

I'll try to answer some of your questions, but first of all, I want to say that you need to spend some time with your doctor and make sure you know as much as possible about your treatment.  You are your own best advocate and it's your job to make sure that you keep the doctors and the nurses on their toes.  If you don't understand something, or if you think they are forgetting something, or if you think they aren't doing what you were told they would do as far as the treatment goes, ask!  Be smart.  It's your health and your body.

After my first internal treatment, I felt a little nauseated on the ride home (about 50 minutes) but it wasn't too bad.  You will need someone to drive you home from the hospital as they won't release you otherwise.  The worst part of that treatment was that they positioned me in such as way as to make my back really sore.  The soreness made me unable to do much for the next day or two, but I told the doctor and nurses about it before the next internal radiation (called brachytherapy) and they positioned me better.  I was fine from then on and could have gone back to work the next day if I had to (I was on a leave). 

I'm unclear about your chemotherapy.  I had chemo (low dose cisplatin, once a week for five weeks) and it was for the sole purpose of enhancing the effects of the radiation.  I lost only a tiny bit if hair (could hardly tell).  It wasn't bad at all.  Everyone reacts differently, but I got lucky and suffered some mild side effects (gastrointestional mostly).  You do need to be careful about getting sick, but the chemo I got wasn't even close to debilitating.  Are you getting a different chemotherapy?

Sounds like the doctors are very hopeful that you'll be cured.  Three months after the last radiation treatment, you'll probably get a PET scan and, if it is clear, your chances of having been cured are very high (according to my doctor).  I'll be going for my 2 year checkup on Wednesday and I am crossing my fingers that all will be well.

It will take some time to feel like yourself again, but it won't take too long.  You'll start feeling stronger and stronger.  As far as your boyfriend goes, you don't need to be around people who bail when the going gets tough.  You'll find someone else who deserves you.  This ordeal will make you stronger emotionally, you'll see.  Good luck. 

How did the doctor miss this? If your case was more serious, did the doctor do any other tests to make sure nothing was missed? Did you look at all of your lab reports? Some women have said their doctors dilated them to look inside the endocervical canal to see if anything else was there. This to me sounds like a wonderful idea, in that it is so proactive.

You may need to report the doctor to the medical board.

I realize you are going through a difficult time, but please research your condition and all of your options. That way, you will be able to make an informed decision.

If your doctor does not educate you, please don't hesitate to get another one.

I have seen the lab and surgery reports.....However, the lab made the mistake in recording the test results.  On one page it describes the lesion as being a certain size and depth, and two pages later, it describes the SAME lesion as being so small, one needs a microscope to see it !!  BIG DIFFERENCE!!

When I inquired on having another pap test done...(it's been 3 months since the surgery), the Dr told me it wouldn't be an accurate report, due to the fact they would only be getting samples from the areas that had the surgery,  I guess that makes sense???

I am dealing with one of the top four Hospital and clinic in the country...but, I am very confused as to why all this radiation and chemo is necessary for a lesion that can only be seen by a microscope???  Surely I won't need as much radiation and chemo as someone who is in a STAGE 4????   (this is only a 1B?)

I have an appointment in less than a week with the radiation dept. to discusss treatments, ect.  I am scared and confused all at the same time!!!  Terrified of the end results??? Severe damages to bladder, intestines, healthy cells......Just plain unfair !!!!!!!!!!

On 6/22/2009 herenow wrote:

How did the doctor miss this? If your case was more serious, did the doctor do any other tests to make sure nothing was missed? Did you look at all of your lab reports? Some women have said their doctors dilated them to look inside the endocervical canal to see if anything else was there. This to me sounds like a wonderful idea, in that it is so proactive.

You may need to report the doctor to the medical board.

I realize you are going through a difficult time, but please research your condition and all of your options. That way, you will be able to make an informed decision.

If your doctor does not educate you, please don't hesitate to get another one.