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cervical cancer well-differentiated adenocarcenoma IB1 treatment questions cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

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  #1  
Unread 09-30-2005, 08:09 PM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

I'm wondering if others who also have had stage IB1 cervical well-differentiated adenocarcenoma could share what treatment they ended up getting?

I had a radical hysterectomy, kept my ovaries (only 33 yrs. old), pathology showed large (but still under 4) tumor, clear margins and spread to the blood vessels in the cervix.

I'm currently undergoing a 5 1/2 week course (just finished 2nd week) of daily, external radiation, will then take 3 weeks off, then have internal radiation once a week for 3 weeks.

A second opinion indicated I should NOT have kept my ovaries and should consider having them removed post treatment and that I should have chemo in addition to the radiation. I've read a dozen opinions now and they're all conflicting.

Any personal experiences/opinions you'd like to share?
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  #2  
Unread 09-30-2005, 10:09 PM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

Hi Rayona,

I had Stage 1-B squamous cell carcinoma of the cervix. My gyn recommended radiation prior to TAH/BSO. They removed my ovaries because the radiation just fried them, so they were no longer of any use to me. If you are having external radiation now, it is probably killing your ovaries. I would think that it wouldn't matter if they were removed are not. I would discuss that with the radiology/oncologist.

I know it is very confusing. When I went for my first consult with the radiology/oncologist, he said something about doing a radical hysterectomy then radiation. My gyn wanted the radiation first. I had been going to this gyn all my life, so I had built up a very trusting relationship with him. I remember distinctly...the radiology/oncologist had left the room for me to get dressed. I prayed to God to tell me what to do. He answered immediately, trust the gyn. I did! That was in 1991. I'm not saying that I haven't had troubles (abnormal paps), but I wouldn't do anything different.

I wish you good luck with your treatments, and peace of mind to help you make the hard decisions that face you.

Take care! Jeannie
  #3  
Unread 10-01-2005, 04:35 PM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

Hi Rayona

I had Stage 1B1 Grade 3 squamous/adneo(mixed type) tumour, 1.4 cm, less than 50% invasion into cervical wall. I had a radical hyst and told them to take the ovaries while they were at it. I was pretty freaked out by the diagnosis and because I was 42 I figured, I didn't need them anymore.

There was some discussion re whether I would need radiation after the surgery but it turned out what appeared to be lymphvascular invasion (no lymph node involvement, but cells on their way to the nodes), was an artifact on the slides, so the rad/onc and the tumour board decided no further treatment was needed.

There was never any question of me having radiation prior to the radical hysterectomy.

I understand the protocol now is, if the tumour is larger than 4cm, to bypass surgery entirely and just do radiation/chemo. Some ladies here have gone that route and may be along to share their stories.

They like to try to avoid doing surgery AND radiation/chemo if at all possible these days.

Best of luck to you!
xo
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  #4  
Unread 10-02-2005, 09:50 AM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

I had cervical cancer stage 1B1, squamous cell, moderately to poorly differentiated, measuring 3x2x.9 cm and invading about 41% into the cervical wall. Capillary-lymphatic space invasion was identified.

Before the surgery the gyn onc seemed to think the hyster would take care of it and no further treatment would be needed. After the surgery and after they got a chance to accurately measure the tumor, and saw it was bigger than they thought just by visual examination prior to the surgery; and when the vascular space involvement came back positive; he changed his recommendation to chemo and radiation (which scared me to death).

We did some research on our own and found that the vascular space involvement, which the doc said was a large part of the reason why he changed his mind and recommended chemo and radiation, actually isn't very predictive of anything. It's more that traditionally, vascular space involvement has been seen as a risk factor for the cancer recurring. But research doesn't bear that out. There's also a lot of error involved in deciding whether there is or isn't vascular space involvement. The main thing is how big the tumor is and how far into the wall it has penetrated. This is what my brother got from all the research he read for me during this time. (He got so good at it, that my gyn onc asked my brother if he was a gyn onc himself, during a phone conversation!)

Since my tumor was not too big (under 4cm I guess is the big thing) and not more than 1/2 way into the wall, we decided to forgo the chemo and radiation, and just do radiation to be on the safe side. I truly felt at that time I couldn't take both. I also had nerve damage in my legs from the hyster. and they said the chemo could cause nerve damage, I think in the extremities they said. But since I couldn't even walk at the time, I didn't want to do anything that could further hinder my nerves' recovery, unless I thought I could die without the treatment.

So that's how we decided. Nobody mentioned having radiation before the surgery, but that wouldn't have been an option for me because I was pregnant with twins at the time of the surgery. (Devastating.) There's no way I would have had radiation with them still in there.

IT's hard to decide the right thing to do. Learn as much as you can, and yes, go with your gut because the gut often knows.
  #5  
Unread 10-02-2005, 12:03 PM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

It seems that there are lots of varying opinions on exactly how to best treat cervical cancer, and you will read lots of different treatment stories. The best thing you can do is to get as many opinions as you are comfortable with and then make the best decision you possibly can.

The chemo that they typically use with cervical cancer is cisplatin. This particular chemo makes the cancer cells more sensitive to the radiation so that the radiation can eliminate them more effectively. The research does appear to indicate that there are better outcomes when chemo is done with radiation, but not everyone believes that the difference is significant enough to warrant having both treatments. And it may be that it is more beneficial in some cases than in others. Since I'm not a doctor, I can't really comment on your case, but I do admire your persistence in trying to find the treatment that will give you the best outcome. Keep talking to your doctors and keep doing your research.

Have you asked your radiation oncologist about this? Were you referred to a medical oncologist in addition to the radiation onc and the gyn/onc?

Good luck! Please let us know how you are doing!

  #6  
Unread 10-02-2005, 09:21 PM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

Hi there. It seems we have a lot in common. I am only 31 yrs. old and just had my radical hysterectom 6 weeks ago. I have had 5 days of radiation and hate it so far.

I had well differentiated adenocarcinoma 1B1 (later turned into 1B2) with no lymph node or vascular involvement/clear margins.

I had a terrible time making up my mind as to whether or not to do the chemo PLUS radiation. One great hospital wanted to add Chemo and the other refused to do so.

I need to re-read your post. I can't remember if you had vascular involvement, which makes a diff. in how you treat things. I had 40 nodes removed and all were clear. The team of dr.'s that said NO to chemo and internal radiation really didn't take the decision lightly. They said the chemo would sensitize the RT (radiation) and that the long term side effects would outweigh any benefits I could have from the combined treatment. In other words, the chemo would offer me little or no survival improvement--and the side effects ("eating my supper on the toilet due to my bowels being so messed up in 20 yrs."). I have had lots of pelvic problems due to child birth, so this was only going to be complicated further with the chemo.

I was literally losing my mind trying to read the literature. I need to read your post. Please send me a private email if you have any more questions. I pray you are getting some good advice from this website.

Shawna
  #7  
Unread 10-02-2005, 09:26 PM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

One more thing-I would ask them what they are basing their decisions on. Ask them to give you copies of the literature. Is it the vascular involvement that they are basing the chemo or internal RT? The cancer tumor is gone.

And yes, I kept my ovaries too. They are being fried in the RT each day. STINKS!

We are so young--and the literature is very gray on whether or not to add the chemo. Look forward to hearing from you.
  #8  
Unread 10-03-2005, 02:55 AM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

I am sorry that you are having to face this.

I had a 1B1 squamous cell cancer of cervix which was about 10-15 mm x 5 mm deep. There was extensive lymphvascular space invasion. The depth of invasion was difficult to tell as I had had a cone biopsy first which alters the size and shape of the cervix, but we think it was about 40% invasion based on our best guess.

I had a rad hyst with ovarian transposition (only 31 years old, no kids and ?????possibility for surrogacy later???). All nodes negative, with negative margins and negative parametrium.

I thought long and hard about radiation, with the gyn-onc saying no, and the rad-onc saying that he would give it to me if I wanted to reduce as much as possible the chance of recurrence but that he would not recommend it based on the high risk of significant side effects after rad hyst, and the fact that in me at least, the benefit of the rads was not greater than the risk of serious side effects.

I didn't have the radiation and still wonder about it every day if I made the right choice.

The rad-onc was great - I had printed out a whole lot of medical journals about who should have radiation, and he knew them all, and we went through them together and calculated my risks of recurrence versus life-threatening/life-changing side effects. This was how we came to the decision not to have radiotherapy.

I hope that you feel as though you are getting answers to your questions. I know that I started to feel a lot less lost and upset when I realised that some things the doctors just don't know - they can only treat you based on what they feel is the best thing for you. Once I accepted this, I started to feel a bit better about what I have chosen to do. There are no guarantees and there is no-one to blame, although originally I wanted someone to be accountable or take responsibility for my treatment decisions.

It is so hard to not be in control about this, and to have no firm pathway or guarantee. I hope that it all goes well and that you start to feel better. xxx
  #9  
Unread 10-04-2005, 08:01 PM
cervical cancer well-differentiated adenocarcenoma IB1 treatment questions

Thank you everyone for your concern, feedback and shared stories. I spent a lot of time doing research and fortunately have two OBGYN's I am very close with who spent lots of time researching on their own and talking with other oncologists they know. After all of that I finally decided to just stick with the radiation I am already doing and skip the chemo. I will also be keeping my ovaries. It looks like this is what the majority of people consulted recommend in my personal situation. You are right - there are no solid answers and no guarantees. I just have to trust that I've made the best decision I could and hope for the best.
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