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New Member - Post Surgical Radiation?

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

My name is Josie. I am new to this board and looking for answers.

At 58...59 next week...I am mom/stepmom to 5 grown children...2 are mine and 3 are my also widowed husband's kids. Between us, we have 4 grandchildren...my 15 year old grand daughter; his 2 1/2 year old grand daughter; and his 4 year old and 6 month old grandsons.

On Nov. 17, just one month after diagnosis, I had a radical hysterectomy, including pelvic lymph nodes and peritoneal wash, and am at home recuperating from surgery. Being menopausal, it was an easy choice. I saw no reason to hang on to reproductive organs that no longer work anyway.

My surgical follow-up gyn/onc visit was for staple removal and pathology results. Surgery went well, little to no bleeding, but had a severe allergic reaction to pain meds and now have aligator skin due to the frickin' rash. Ugh.

Path report: All biopsies were negative; but one area of concern is that the cancer had moved more than 1/2 way through the uterine wall. How much more than 1/2 I was too stoopid to ask. There is no evidence that it breached the muscle, but it is an area of concern for recurrence of the cancer. Again, I didn't think to ask what the typical odds are.

Doc has given me the option of choosing to have "preventative" radiation of my remaining pelvic area. He told me the old thinking used to be that a choice wasn't really given and that women were pretty much pushed into doing it. These days, he says, modern thinking is not so regimented. Gotta appreciate that.

Don't know what type or how much. He said I should do some research and talk to women who opted to have it as well as those who did not. I go back on Dec. 14 for pelvic exam and to further discuss radiation options.

After some reading here, I realize there's a LOT I don't know about my particular cancer even though I THOUGHT I had asked plenty of questions. I'm developing a long list of new questions to which I need my onc. to answer before making my choice...what type, stage, how far past 1/2, etc; what kind of radiation is he thinking and how long; what are the pap smears every 3 months going to tell him; how will they know if it's come back. And probably more as I continue my reading.

Other than find info on what types of radiation are available and possible side effects, I'm having challenges finding the kind of info I really want.

ie: For the type of uterine cancer I had, what are the chances of recurrence in the pelvic cavity?

How do you deal with the side effects and what are typically the chances of having them?

Where exactly is the treatment going to be pointed...wide...narrow...how do they know where it needs to go and how many treatments are needed to gain the most likelihood it won't come back?

After my initial euphoria that it was all gone, I suddenly feel like a time bomb.

Help?

Josie

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

Thanks for the comments, Patricia.

I don't actually have any physical copies of any of the reports...it's on my list of things to ask for.

The grade given to me by my reg. gyn after the Vabra and before referral to the gyn/onc was GRADE 2. Onc. Doc said more than half way through the muscle at my first post surgical visit, but I'll get clarification on that.

Looking around the boards a bit, I haven't found anyone yet who got the same type of "all paths are negative, but..." who has talked about how they made the choice eithr TO have the preventative radiation or who decided on observation...but, I'm still looking.

I'm still hoping they'll read this and give me some insight to their thinking. My own current thought is NOT and take some holistic/alternative measures if and as I can afford them on my own towards preventing recurrence. (no insurance and don't qualify for most forms of aid. :( ...the oncologist's bill is going to take me forever and 3 days to pay off...a local free clinic is covering hospital and lab fees, thank the universe.)

Anyway, I just need some feedback to help me look at all sides before I give my oncologist an answer in 2 weeks.

MoeKay
Posts: 63
Joined: Feb 2004

Josie:

I was treated for endometrial cancer in 1999. All of the 30 nodes removed were negative for tumor, as were the pelvic wash, tubes and ovaries. I was surgically staged as a 1c, grade 2. I had both internal and external radiation, which my gyn-onc prescribed. I had several factors that made my risk of recurrence more likely: a tumor arising in the lower uterine segment, extensive lymph-vascular space invasion, a tumor larger than 2 cm., (mine was approx. 4 cm.) and outer 1/3 myometrial invasion (mine had invaded approximately 80% of the myometrium).

I would recommend that you get a copy of your surgical and pathology reports and schedule a consult with another gyn-onc. You need some guidance on how a professional who sees this type of cancer regularly feels about the benefits versus the risk of radiation in your particular situation. There has been a tendency over the past few years to prescribe less radiation for early stage endometrial cancer based on the results of the research studies. However, the studies are not without their limitations and inconsistencies.

I suggest that you become well-versed in the details of your case, prepare a list of questions, and then ask the same questions of several gyn-oncs and compare their responses. This is not a decision to be made lightly.

Best of luck and health to you.

MoeKay

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

That's my concern, too, Patricia....the side effects...I'm a natural redhead and burn easily...my vagina has always been what my regular gyn called "friable"...I don't douche except when absolutely necessary and I've never used tampons. I already have issues with sporadic IBS and know all too well what a painful (and messy) situation it puts me in.

Some of what I've been reading elsewhere the last few days also says that exposure to radiation is suspect in causing some gyn cancers. Do I want to add to my risk?

I suspect that at the basic level my cancer is/was 1c and I know, initially the cells were graded at 2...but, without other details it's hard to look up statistics of recurrences that mean anything at this moment.

None of this is taken lightly...I want to live as long as I can...but LIVE it is what I want to do with it. It boils down to quality of life as much as quantity...we kayak and camp and are planning to live a gypsy life a few years down the road before we are too old to enjoy it. (selling it all and hitting the road inna pickup with a 5th wheel tied to the back...plenty of time for the retirement home later.) Truth is none of us are promised past this moment...I could walk out the front door and be hit by the garbage truck tomorrow. Yanno what I mean?

As for the avatar...it was sent to me a few years ago by a dear, now deceased, also widowed friend with the title "Do ONE Brave Thing Today" when I was down and needed a laugh. I thought it was pretty appropriate to my attitude towards my cancer. Glad you liked it.

Thank you, MoeKay, I appreciate your input. The more I can talk to people who have been or are in my boat, the better I will be able to make my decision on what's right for me. Statistics and studies are an aid, but real people carry a lot more weight since uterine cancers are not as funded and studied as breast and cervical.

Kaleena's picture
Kaleena
Posts: 998
Joined: Nov 2009

Hi Josie:

I had a total hysterectomy in 2005 (age 45) due to endometreosis. After the surgery, the path came back indicating they had found cancer in what they took out. I had a staging surgery with lyphn nodes dissection and washings. All washings and biopsies came back negative on second surgery. They classified me as a Grade 2 IIIa endo cancer since they found it both in the uterus and on my left ovary. It was suggested that I do preventative treatment.

I decided to go thru with it having 6 treatments of chemo (carbo/taxol). I had a reaction to the taxol so I was put on gemzar. I do not know why if it was preventative that I had the same chemo as everyone else. In August of 2006 my gyn onc wanted me to have radiation. The rad. onc didn't want me to have pelvic radiation due to all of my scarring and decided just to do 3 brachyrads. He said that the risks of pelvic radiation outweighed the benefits. Further, they also gave me a port (which to this day I still have).

I went regularly for check-ups and had a CT scan done yearly along with mamograms.

Recently, I was just diagnosed with endo cancer again in an area which had shown up on CT scans since 2005 but did not "qualify" as cancer on either PET/CTs, CTs or MRI scans. It shows up as scarring or fibrosis.

I was concerned about just getting radiation with chemo sensitization (which they suggested because they indicated they could not operate due to location). But I was concerned because once they would radiate that area, it is a one time deal. Further, the long term effects of radiation are unclear, but some can be bowel obstruction, fistula, more extensive scarring, which if you needed surgery would cause problems.

Also, for your information, my CA125 never was an indicator.

I have gotten a second opinion (more like third opinion) at a top notch hospital facility several hours from my home. They indicated that they can remove this tiny tumor with a short surgery (not a long one). I am opting for that. I want to try to save radiation IF I need it later. (My regular gyne/onc doctor retired back in 2008)

I hope this was of help to you. My best to you!

Kathy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

josie and everyone,

first, i want to add my name to those who have conveyed to linda how important she is to this discussion group, and how sad we are at her recurrence, yet still hopeful for her remission and long life.

piggy backing on what josie has asked, i recently finished chemo, after a very big surgery, and also need to decide re: radiation. i have 4 different opinions from 4 different doctors, all of whom i respect. my main doctor has recommended brachey therapy only (radiation of the vaginal cuff), while the three other doctors have recommended pelvic radiation of one kind of another. i do understand that there are significant, sometimes permanent side effects to more extensive radiation, so i'm leaning towards vaginal cuff only.

for those of you who have been diagnosed with upsc stage 3/4, what have you done? i'm wondering how many of you did more than brachey therapy, or other than? what has been your experience?

thanx,
maggie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Josie and Maggie,

Hopefully you are seeing GYN/ONC and not just a regular onc. Talking preventive radiation without telling you the stage and grade sounds strange to me. I think a second opinion is a valid consideration and please check the treatment guidelines on the NCCN.com website. This is a legit resource.

I have stage 3a uterine papillary serous - aggressive - and my doc recommended chemo only. He didn't recommend radiation "because the science does not support it". There are major side effects with radiation and radiation can cause cancer.

With the recurrances that are talked about here, I wonder how many of these women had radiation. Fran, I believe was stage 1 and had radiation and recurrence. UMMM - maybe radiation contributed??

I wonder if this doc would want to prevent his/her own cancer with radiation.

Mary Ann (a cautious skeptic)

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

Thank you all for your replies. I appreciate the time you've taken to share your stories with me.

Recurrence wasn't even in my vocabulary when I went for my post-op visit. My focus was recuperating from the surgery. I was thinking cure...done...over when he said all the paths were negative. I was too shocked to ask for details when he mentioned it and radiaton in the same sentence. I reckon I'm fortunate I heard that the choice was mine as opposed to 5 years ago when it was an assumed part of the protocol.

In talking to my Handyman (what I call my hubby becuz he is) the onc doc did give me basic idea...the cells were 2nd degree and the stage was 1c. I can get the fine details when I see him next week.

Howsumever, at this point I'm not finding enough large surveys to indicate that with negative paths on lymph, ovaries, cervix and a negative pap return from the first visit that radiation is the way to go for me. And in 2 of the surveys I read there was also your note of possible recurrence caused by radio.

I'm seriously thinking of alternative therapies for rehab and future prevention....diet, yoga, accupuncture, etc. With the current economic status in this house of 1 sick leave with no pay me, 3 laid-off adults (only 1 still qualifies for unemployment), a teen-aged granddaughter, no insurance and just enough financial resources to keep me from qualifying for aid, I'm going to have to manage this on the cheap. We're gonna find out how creative I can be.

Look here for some good accupuncture info: http://acupuncture.com/newsletters/m_dec05/main2.htm

For as soon as my belly healing allows, I also just found a website for restorative yoga: http://www.beliefnet.com/Health/Emotional-Health/Bipolar/Restorative-Yoga-for-Body-and-Mind.aspx (you'll have to do some ad skipping)

And this for working on that scar tissue: http://therapythatworks.org/postsurgicalmassage.aspx

I'm not into gardening (brown thumb) but our local stores are carrying more and more certified organic produces I plan to add to the grocery list. I don't have a juicer, but I've got a damned good 33 year old Hamilton Beach blender that works better than most modern ones. If anyone would be willing to e-mail me their favorite recipes, you can reach me at j o s i e s h o u s e @ c h a r t e r . n e t (from experience on other boards, I've learned to be careful giving out my e-mail addy, so you'll have to take out all the spaces between the letters...sorry)

Seems I'm about to become a "fringer."

culka's picture
culka
Posts: 158
Joined: Oct 2009

which mean I will copy that page for you
http://greensmoothiesblog.com/

you can go through their web (raw family) and find lots of valid information and nobody talking about cancer only about health.

Watch blog from November 12. Young Sergei making smoothies, don`t be surprise if you get body reaction after starting to drink it like headache or blisters in mouth. Toxins have to go.

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

Thank you, Culka, for the link. It is saved in my bookmarks for future shopping trips.

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Sorry I haven't responded sooner but I was on vacation. I am in the same boat as you and there's not a lot of information on Stage 1C, Grade 2 Uterine Cancer. Initially, the doctors thought I was Grade 3 but after surgery I was downgraded. My concern was reoccurance. The gyn/onc didn't feel any other treatment was necessary. However, I went for a second opinion at Moffitt in Tampa, FL and they recommended Brachy therapy. After their opinion, I asked my gyn/onc who said that he wasn't opposed to Brachy but not any other treatments. The main reason was brachy was that it lowered my chances of reoccurance and since I'm 48 (young for uterine cancer) Moffitt thought it would be a wise treatment.

I then opted to have the brachy and went for a total of 4 treatments. My last treatment was Friday, Dec 13th. No side effects of any kind except being a little tired the week after my final radiation.

Hope this helps.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Susie,

Welcome back from Vacation...gosh I could sure use one :)

Glad to hear the Brachytherapy sessions went well....I am trying to get thru week 2 (of 5) Radiation treatments and my first round of Chemo....

Any tips for me???

Laurie

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Hi Laurie:
I only needed the brachy treatments. However, my mom is in remission from breast cancer and she went through chemo and radiation. One of the tips that she told me was to eat an ice-pop during chemo to help prevent sores in the mouth. Also, to drink ginger tea to help calm the stomach.

Hope this helps a little.

Thoughts and prayers to you as you go through these treatments.

Sue

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