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Endo cancer Stage1A-Grade 2

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

Whooowhee!!
Went to gyno-onco today for first f/u since robotic laproscopic radical hysterectomy done on 1/12/11.
Stage1A-Grade2, cancer contained in uterus, fallopian tubes clear, Ovaries clear, cervix clear, 7 lymph nodes clear. No chemo/no rad needed. Going bk to work this Monday.(desk job)
Says pelvic washing found some abnormal cells says it was not cancerous yet but mutated. Must have come up from uterus thru open end of fallopian tube. Says she feels should not worry about it, not important to go thru chemo. Said yes there could be more hidden but in her opinion she does not think it's a real threat.
Says caught it very early, if I notice any abdominal changes like boating, swelling,pain or pain or shortness of breath in lungs (that is not asthma related) or obvious like vaginal pain or bleeding I should see primary or the gyn right away & then they will send me to gyno-onco if needed.

I believe she knows her stuff, what does anyone feel about these some stray abnormal cells found in the pelvic washing?

I am very pleased & God blessed. Thank you all for your wishes & prayers.
Thank you for your input.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hello Domina:

I am happy for you. Many blessings to you for good health and happiness!

On a different note, when I had my hysterectomy, it wasn't for cancer. I had severe endometriosis. (I had even had a laparoscopy and transvaginal sonogram which showed nothing). After the pathology examined it (they exame anything that is removed from the body), they found endo cancer in the uterus and one spot on ovary. When I went back for a staging surgery one month later, they found nothing. Nothing in lymph nodes, washings clear, etc. They staged me as Grade 2, Stage iia. I was advised that I should have preventative chemo for any rouge cells that might be roaming around. I decided to have chemo because I knew how I am. They didn't think I would need radiation, but a year later after my chemo, they decided to give me 3 brachytherapies only.

If you decide to do chemo, I would do the gemzar carbo. I say that because of your stage and grade. You don't lose your hair and you don't need all the presteroids stuff. (anyway I didn't get that).

That was back in 2005. I had a small recurrence (acknowledged by a biopsy) (something they missed at original surgery), which was removed in Feb of 2010. They removed it and it was negative. They did find one lymph with microscopic cells but it was removed. I did not do any treatment for this. I just get PET scans (not PET/CT) every six months. I have had 2 PET scans since then and all has been good.

I hope I didn't confuse you. But I did it both ways. My only thought is that if your doctor says there can be more hidden, why wait for it to show? Get before it developes. If you are not sure, I would get a second opinion.

I would feel better for you if you got a second opinion. I have actually gotten three opinions because I felt the first two doctors were working together. Just so you know, I was all against chemo when I first found out but then I thought about it and I would rather zap any and all cells that might be there than to worry about every little ache and pain that it was returning. So then I opted for chemo.

Also, what is your follow-up? With my one microscopic cell (which was removed), I was on two three-month visits (with PET scans) and now every six months (with PET scans).

Sending hugs your way!

Kathy

PS Also, look on other posts on ladies who had the same "low" cancer diagnosis as you.

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

Kathy:
Ty for your reply & good wishes. After I wrote the above post I read the full path report & the "one" abnormal cell I heard the onco say verbally reads "some" cells so I edited the post to correrct it. The path reports says these "some" floating pelvic washing cells had no malignancies in them.
She set a f/u w/onco on 3/4/11 & said every 6 months for at least a yr or two to go see my the gyn. She said she will not do cat scans. I never had a pet scan.
She said since my stage was so low & the tubes/cervix/Ovaries/lymph nodes were clear of cancer & the pelvic washing cells were not cancer she would not recommend any other treatment like chemo/rad unless I presented in future w/anymore symptoms. Now that I thought I heard "one" but it says "some" on report I don't know if that's just semantics.
I don't know what to think. I was not a candidate for hormones since I was too overloaded w/estrogen. In past progesterone was given to thin out my endometrial lining but that was 10 yrs. Ago & d & c tissues,biopsies & transvaginal ultrasound showed no cancer.
The endometriosis saved your life, wow! You would never have had the hysterectomy in first place to do a staging if you did not have the endometriosis.
You said you had a small recurrence that was missed in original surgery & you had it biopsied & it came back clear.(fantastic) but I am a little confused (sorry).
#1 how was it missed, #2 where was it,#3 if you had a hysterectomy what was still in there to biopsy,#4 can it really be a recurrence if it was negative?

I'm sorry I am so new w/this. I am going to talk to my family & consider getting a 2nd opinion. I know the 2nd opinion should be close in case you want to continue treatment but I was thinking of contacting my previous the gyn in FLORIDA. I am in NC now. He is not a gyno-onco but I think that is a start. Then maybe a 2nd opinion w/ a different gyno-onco.
Does this make sense?
Anyway hope all goes well for you. God bless & continue the survival,Ty for your words & story it has given me some things & ammo to say to the onco.

nempark
Posts: 683
Joined: Apr 2010

I was dx in November 2009. Had the works, every thing removed. First Doc said to me "do the Hyst next day you will be out of the hospital 1-2-3- done No further treatment. Second opinion with gyn/onc Same as previous doc, only that the cancer is very aggressive STAGE 1A Grade 3 and to be on the safe side (chemo carbp/platin) which was a breeze. Doc said you cannot take any chances with micro cells. Let's know what you think. by the way every thing else was negative for me. Why wait for anything to show up later when you can take care of it now. You are the only one who can made the decision. Get another opinion. June

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

June:
Ty for your concern & info. Iam glad you r doing well now.
I did question gyno-onco & she said my cancer was small, did not invade the muscle, wall & no other organs, lymph nodes involved. She said if my stage was higher than 1A and or my grade was higher than the current grade 2 than chemo/rad would be recommended. She feels since the pelvic
washing cells were not cancerous the chemo/rad would hurt more healthy tissues/organs then it would help trying to find remaining cancer cells. She said since the washing cells were not diagnosed cancerous she made that decision based on all factors like the staging/grade,no organ or lymph involvement.
I am still thinking about a 2nd opinion.

Thank you for your advice/concern & best wishes for you.

nempark
Posts: 683
Joined: Apr 2010

You put all this behind you and go forward. I wish you continued health. Your Doc knows best. Love and best wishes. June Please keep in touch and also enjoy working live. June

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

in decision making about further treatment. Remember how worried you were that you were at high risk for surgery? Chemo and radiation are really hard on a body. Even if you have few side effects, the chemo is still running around all through your body, creating havoc on everything in its path. It's nasty stuff, but it can save your life and often the risk of chemo is worth the risk of serious side effects.

I trust and am comfortable with the advice of my gyn oncologist for MY diagnosis (Stage 1b, Grade 1 - no adjuvant treatments, pelvic and Pap every 4 months). I don't want a second opinion, I've done my research, and my breast cancer oncologists have independently given me their 2 cents that they agree. If I had not been comfortable with this, I would not hesitate to get a second opinion. If you feel you need one, please get one. Peace of mind is important.

Suzanne

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

Thank you for your reply. I have thought about a 2nd opinion but I am confident my gyno-onco would have recommended additional treatments such as rad and/or chemo if she felt it would benefit me. She was also the one who was the most concerned w/all my other
Health issues that rendered me high risk before surgery.
She explained because of my low stage & no cancer was found in lymph nodes etc. she didn't feel the addit therapies would help she felt under my situation it would hurt.
Believe me no one wants to go thru that if not needed. There is no gty if I had it that it still would not re-occur & no gty the 2nd round would work if the first was given for a "just what if" situation.
I don't want to put my head in the sand but I also don't want to become so alarmed about every "what if" cause that is not a life either.
It is a decision we all have to make & it is hard.I am not knocking the other women who did have addit. Therapies because everyone's case is different & each stage & grade is different.
I am very thankful I did make it out of surgery & I am very thankful I have wonderful women (like you) & the rest here who have helped & will help me go thru & survive. Good luck & God bless us all. TY

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

June, Ty I have been at work all this wk, except for 4 hr. Primary appt yesterday I would have put in 32 hrs. Feel a little tired the 5 laproscopic holes are really healing fast. The only pain I notice is internally when I get up out of chair I feel a pulling sensation but it goes away after I walk around & only hurts again when I am sitting & start to get up again. Hope all is well w/u. Blessings

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Domina:

It seems that you are making a wonderful recovery. Those little pinches are just part of the healing process. Don't forget they removed stuff! Each day you will get more energy. My blessings to you!

Kathy

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

Kathy:
Ty for your concern & post, I am feeling unexpectedly great for being out of surgery so recently. That vaginal cuff stuff is what feels sore when I lift up from a chair, guess it will get better in time, doc says that takes a really long time to heal. Only other prob is I am leaking urine big time. I wrote about it in a separate post.

Hope you are doing well. All you wonderful ladies really are supportive, thanks to you & all.

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