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Final pathology

Sisters three's picture
Sisters three
Posts: 158
Joined: Nov 2012
I was graded-Endometrioid  Adenocarcinoma
STAGE  1-A The cancer is only in the endometrium, which is the uterine lining.
GRADE 2- Intermediate
With Peritoneal Washings positive for malignant cells
 
This is the first time my husband was able to go with me to an appt. with the GYN/ONO.
He was not impressed with the doctor either. I'm sure she is a good surgeon, but a little batty. She stood up the entire appt. pacing, just giving us the body language that she was rushed and needed to go. I had my surgery two weeks ago and yesterday was the first I heard of the positive washings test. Some questions I asked she said, look  at your path report. I asked her what needs done for the positive washings and she said we will talk about it in two months when you come back. I am very unhappy with her and may go back for the surgery follow up in two months but will try to find someone who will give me the time of day. 
 
Anyway our happy joy dance ended yesterday, her initial response to my calls asking about the results of my pathology last week finally produced an email from her with two
lines on it.
"The cancer is very superficial and there is no spread outside the Uterus, that is good news see you next week."  Now we find out about the positive washings. Big Sigh!

 

 
 

 

ConnieSW's picture
ConnieSW
Posts: 627
Joined: Jun 2012

I would not be willing to wait 2 months to hear what the positive washings mean to your treatment plan and future.    She isn't batty, she's cruel to treat you like this.i am so angry for you.  Now the board members will have to help you come up with a plan for how deal with this.  I'm still thinking but someone must have a good idea.   Did you get copies of everything?

Sisters three's picture
Sisters three
Posts: 158
Joined: Nov 2012

I have copies of all pathologies. I was thinking it was me due to being emotional over the whole thing but with the husband sitting there he confirmed it is not me. He said he didn't jump in and push her for answers because he realized he didn't care about any answers she would come up with after her behavior. Yes , woman came highly recommended by two trusted doctors. Apparently brains aren't everything when she doesn't share any of her thoughts with you. Oh well.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'm going to be rather blunt right now....GET A NEW OB ONCOLOGIST.  If we don't feel comfortable with our doc and they treat us like a "bother" and can't be kind, plain and simple -- why go to them?????  I'd run out the door and never go back unless to get copies of all your reports.  These reports are yours and you should march back in there and request copies of everything in your file.  I get a copy each time of all my blood numbers, pathology, scans, etc, etc.  I feel in control this way and if the doc misses something which I think he did, I can call back to his office for guidance.  

Positive washings?  Well I sure wouldn't wait 2 months on this one as the cancer is floating around in that area.  Why would she suggest you wait?  Then have the audacity to tell you to LOOK AT YOUR PATH REPORT, which is her job...isn't she the expert?

Feel sorry you've gotten the run around and told to wait...with cancer, even floating in washings one shouldn't wait.  What will she tell you about the "positive washings"?  Thought that would be part of the original pathology, but I must be wrong on this one.

Possibly I've not kept up with your original diagnosis, therefore, could you could relay again what type of surgery did you have 2 weeks ago?  

Sorry to be "out there" with my comments, but when dealing with cancer, we all deserve a "qualified" and "respectful" doc as there is so much to cancer.  Not a one question/answer diagnosis, and the patient is off taking pills for example to get their high blood pressure lowered.

I know there are quite a few others on this site who have some great experience and able to add more thoughts.  

 

Breathe in deep and let it out, know we're all here for you!!

Hugs...this is what I'd do if you were right here with me...as you deserve better~

Jan

 

 

 

Sisters three's picture
Sisters three
Posts: 158
Joined: Nov 2012

This is to catch up Jan and anyone else: My surgery, two weeks ago was a hysterectomy, usually you are scheduled to come back after 1 week, the nurse gave me a two week after appt. and when I told her per the doctor it was to be 1 week she said the slots were all filled and two would be fine, this was the doctors right hand lady. I couldn't wait two full weeks to get the pathology so I called at the one week mark to find out the results, no one ever called me back so I sent the doctor an email. She emailed me back with the two lines that everything was fine. Then when I came in the next week she  handed me the pathology and then mentioned the positive washings, yes that was on the path with everything else from surgery. She just didn't bother to put THAT in the email.

I had a whole week to be happy then to find out about the wandering cells in the washings it was like having my toy taken away. So of course I acted like a mad child!!!!

I just did some research they used to upgrade your staging  to a higher number when you had positive washings now they don't. If you have positive washings and everything else is negative other than a uterine tumor that hasn't spread outside the uterus they kind of ignore it. That is my category, everything clear now that the tumor is gone. Nothing else had positive other than the washings. 

I guess this is why all you ladies who aren't docs and nurses, which of course we have some of those too, talk like you are. I'm starting to understand some of this mumbo jumbo I'm looking up. Anyway It still would have been nice if she had told me there was a reason she wasnt addressing it. 

Jan you hit the nail on the head with the word respect, it was definitely missing.

I will be doctor hunting soon.

Thanks,

Lisa

 

PS ladies: They took out all my hormone making parts and I believe I'm turning into a major witch with a b!!!!!!!

One minute I'm mad the next minute I'm apologizing all over my self. I'm only two weeks out, the moods get better right!?

 

ConnieSW's picture
ConnieSW
Posts: 627
Joined: Jun 2012

I'm with Jan on this.  I did some googling and what I came up with only brought more questions to mind.  Where did you get the info you read?  I don't care how skilled this doc is, I don't think you wilL be able to establish a good relationship with her.  I forget where you live.  Do you have nearby choices?  Anyone here from Lisa's area?

Hybridspirits's picture
Hybridspirits
Posts: 155
Joined: Nov 2012

the process that took place with me was very different.  I went to a fairly large hospital who had a gyno oncologist.  The gyno oncologist shared the report but at this hospital she doesn't determine treatment or no treatment. It goes to a tumor board who reviews the case and suggests.  there are a number of disciplines on the tumor board.  Once mine went to tumor board the gyno oncologist was a communicator not the decision maker.  Is your gyno oncologist in private practice, associated with a hospital?  maybe find out the process of determining treatment or no treatment. 

interesting i am assuming all the lymph nodes were ok?  how about the omentum if the positive washings?  how far into the lining and did it touch andy lymphatic channels.   You get all this information from the pathology.

yours is grade 2 not grade one so it is middle of the road there.

Mine was 1A as well and only touched 4MM out of a wall thickness of 20mm.  it did show that where it was there were some lymphatic vessels. what i am told the staging doesn't take into account but history has shown that even though they test lymph nodes they can't test all and if some involvment with the lymphatic vessels it is a factor in treatment,  usually for radiation.

my washings and everything was totally clean,  lymph nodes (61 pelvic and 25 arota)  washing etc.

i chose to get a second opinion at Dana Farber and was happy i did it. My gyno oncologist arranged it.  Actually once the oncologist found out i was going to Dana Farber she was happy as she trained there and had a personal converstaion with the Dr i saw before she concluded on what to do.

my ins paid for the second opinion and support it as well.  only cost me 35 and gas.

what i have found where I live if you have breast cancer they are right on it, but with this cancer it isn't as popular and less attention unless you have someone who puts attention to it. I chose an oncologist who's interest is gynocological cancer

don't stress,  you are in good shape as you see the problem.  that is step 1.  next step is to get a plan in place and find someone to get a second opinion.  when i did go for the second opinion they required tissue samples, i am assuming they did a tissue assay and kep the samples so they can look at them as well.  Dana Farber redid the pathology reviewed the report and gave their recommendation

hang in there,  there are plenty of good Dr's out there

sharon

 

Hybridspirits's picture
Hybridspirits
Posts: 155
Joined: Nov 2012

the process that took place with me was very different.  I went to a fairly large hospital who had a gyno oncologist.  The gyno oncologist shared the report but at this hospital she doesn't determine treatment or no treatment. It goes to a tumor board who reviews the case and suggests.  there are a number of disciplines on the tumor board.  Once mine went to tumor board the gyno oncologist was a communicator not the decision maker.  Is your gyno oncologist in private practice, associated with a hospital?  maybe find out the process of determining treatment or no treatment. 

interesting i am assuming all the lymph nodes were ok?  how about the omentum if the positive washings?  how far into the lining and did it touch andy lymphatic channels.   You get all this information from the pathology.

yours is grade 2 not grade one so it is middle of the road there.

Mine was 1A as well and only touched 4MM out of a wall thickness of 20mm.  it did show that where it was there were some lymphatic vessels. what i am told the staging doesn't take into account but history has shown that even though they test lymph nodes they can't test all and if some involvment with the lymphatic vessels it is a factor in treatment,  usually for radiation.

my washings and everything was totally clean,  lymph nodes (61 pelvic and 25 arota)  washing etc.

i chose to get a second opinion at Dana Farber and was happy i did it. My gyno oncologist arranged it.  Actually once the oncologist found out i was going to Dana Farber she was happy as she trained there and had a personal converstaion with the Dr i saw before she concluded on what to do.

my ins paid for the second opinion and support it as well.  only cost me 35 and gas.

what i have found where I live if you have breast cancer they are right on it, but with this cancer it isn't as popular and less attention unless you have someone who puts attention to it. I chose an oncologist who's interest is gynocological cancer

don't stress,  you are in good shape as you see the problem.  that is step 1.  next step is to get a plan in place and find someone to get a second opinion.  when i did go for the second opinion they required tissue samples, i am assuming they did a tissue assay and kep the samples so they can look at them as well.  Dana Farber redid the pathology reviewed the report and gave their recommendation

hang in there,  there are plenty of good Dr's out there

sharon

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

A positive washing means that they found microscopic cancer cells floating around in the surrounding tissue they removed. The jury is out as to whether to treat early stage patients who have positive washings yet no evidence of cancer anywhere else. If it's highly aggressive cancer, then I would challenge the doctor on doing just nothing at all. 

Here is a bit more on positive washings from a physician I found on another site where the uterine cancer patient asked virtually the same question as you did:

Christina S. Chu, MD, Assistant Professor of the Division of Gynecologic Oncology at the University of Pennsylvania Health System, responds:

You have asked a difficult question. "Washings" are used to detect microscopic cancer cells that may be floating around in the abdominal cavity outside of the uterus. If your friend's washings are positive, but all other tests show that disease is limited to the uterus (no spread to lymph nodes), there are several options that should be discussed with the oncologist. First of all, if your friend has certain risk factors such as a high grade tumor, or deep invasion of the tumor into the wall of the uterus, she may be counseled to undergo radiation therapy to the pelvis. This would be true whether the washings were positive or not.

In the case of positive washings and cancer confined to the uterus, the studies are unclear as to whether these patients should have additional treatment just for the positive washings. Some treatments that have been tried have included intraperitoneal radiation with radioactive phosphorus, progestin therapy (like Provera or Megace), whole-abdominal radiation, or no treatment. There is currently no research to support a definite answer; so all options should be discussed carefully with your doctor.

Kathy G.'s picture
Kathy G.
Posts: 117
Joined: Dec 2012

Hi Lisa!

I was looking forward to hearing your results today and figuring you would be able to continue the 'happy dance!' I am disappointed to hear what you reported.

I have little to no knowledge to share with you about your results, but it appears our trusty board members are willingly doing so much research on your behalf. What a group! I hope you can get some clear answers from what you research, read here, and find out from a follow-up consultation so you have a sense of direction and peace of mind.

It sounds like your doctor is really unprofessional and an a**hole to boot which is doubly disappointing. Sometimes I wonder if doctors who go into specialities are in it for the power and glory (and money!) or because they have a sincere interest in helping people in their chosen field. Her attitude of being in a rush is bad enough, but to tell you...a layman to read and interpret a pathology report is just over the top!

I am not impressed with my doctor having only met him one time, and then having the surgery screw-up which really is not his fault, but still.... I will see how he is when I go in for surgery and at my follow-up and then I will decide from there. He lacks a bedside manner which I really require in a doctor...my regular OB-GYN is such a sweetheart.

I live in the Delaware area so I am close to John Hopkins and Thomas Jefferson in Philly, but due to my claustrophobia and major fear of elevators I decided against treatment at those places. Sad state of affairs, but my justification was I am already rattled enough and do not need ongoing anxiety at this point to make things worse. Plus it is a hardship for my husband to travel due to his disability, and I really need his support. However, if I got a response like you did I would definitely be looking elsewhere in the DE area although there are only a few gyno-onclogists in our state.

I will keep you in my thoughts and prayers as you deal with this situation. Overall, it appears your news sounds good...I am just not educated enough though to know fully about the 'washings.'

Kathy

Kathy G.'s picture
Kathy G.
Posts: 117
Joined: Dec 2012

Hi Lisa!

I was looking forward to hearing your results today and figuring you would be able to continue the 'happy dance!' I am disappointed to hear what you reported.

I have little to no knowledge to share with you about your results, but it appears our trusty board members are willingly doing so much research on your behalf. What a group! I hope you can get some clear answers from what you research, read here, and find out from a follow-up consultation so you have a sense of direction and peace of mind.

It sounds like your doctor is really unprofessional and an a**hole to boot which is doubly disappointing. Sometimes I wonder if doctors who go into specialities are in it for the power and glory (and money!) or because they have a sincere interest in helping people in their chosen field. Her attitude of being in a rush is bad enough, but to tell you...a layman to read and interpret a pathology report is just over the top!

I am not impressed with my doctor having only met him one time, and then having the surgery screw-up which really is not his fault, but still.... I will see how he is when I go in for surgery and at my follow-up and then I will decide from there. He lacks a bedside manner which I really require in a doctor...my regular OB-GYN is such a sweetheart.

I live in the Delaware area so I am close to John Hopkins and Thomas Jefferson in Philly, but due to my claustrophobia and major fear of elevators I decided against treatment at those places. Sad state of affairs, but my justification was I am already rattled enough and do not need ongoing anxiety at this point to make things worse. Plus it is a hardship for my husband to travel due to his disability, and I really need his support. However, if I got a response like you did I would definitely be looking elsewhere in the DE area although there are only a few gyno-onclogists in our state.

I will keep you in my thoughts and prayers as you deal with this situation. Overall, it appears your news sounds good...I am just not educated enough though to know fully about the 'washings.'

Kathy

debrajo's picture
debrajo
Posts: 796
Joined: Sep 2011

Just my two cents worth, but get the Heck outta there and get another Dr. ASAP!  We have different cancers (I have UPSC 1a, Grade c) but all organs AND washings were negitive.  When I talked with my Dr.(at M.D. Anderson) she said she was so relieved the washings were negative and that it was TRULY confined to the endrometrium.  They do take washings Very seriously at M.D. and she said it would change the whole prospect of HOW they would do Chemo.  Get out now, this is your live, and while I'm a drama queen about the "what if's" I wouldn't take the risk of "middle of the road" treatment....just my opinion!  Best, Debrajo

Sisters three's picture
Sisters three
Posts: 158
Joined: Nov 2012

I will be working on a 2nd opinion/Dr. Replacement tomorrow!!!!!!  I am sitting here next to my husband and reading over some of your replies. He is also impressed with your care and answers. You all have put the fire under me to get out of my depression rut and  get busy!!!!

I have located 5 more Gyn/Onocologists within 25 miles. No problem!!!!

Thanks again!

 

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

Lisa,

Sorry you got such unsettling news from your doctor. I agree that you deserve better.

It's smart of you to be looking for another doctor, even if only for a second opinion. I got a second opinion after my diagnosis and felt much better after knowing my doctor and the second doctor were on the same page concerning my treatment.

This link may help you with your decision, since you're looking at 5 gyn oncologists.

http://health.usnews.com/top-doctors/directory/best-gynecologic-oncologists?page=3

Best wishes as you navigate through this medical maze.........

nempark
Posts: 597
Joined: Apr 2010

First opinion said hysterectomy no treatment.  Endo cancer MMMT stage 1a grade 3.  Second opinion said radical hyst and to  be on the safe side because of agressiveness --- 6 treatment of carbo/taxol. 3 years in remission.  

Please, again I am urging you to get another Doc and please for the sake of others write the Director of the hospital now that your surgery is over.  Beila as a Doctor herself thought this was okay after surgery.  So please do not let her disrespect more patients.  Be well friend and don't wait two months.

susangr
Posts: 63
Joined: Oct 2010

But you have time...... Generally they wait 4-5 weeks postsurgery to begin chemo, radiation, etc.....  Make sure you get hold of your patho slides and that they don't toss your tissue samples out.

Often they want to assess them again.....  I may have missed it but did they check any lymph nodes?  Usually they sample in the range of 20 to get enough of an idea of whether there is lymph node or lymph space involvement.  I have UPSC an aggressive form of uterine cancer with lymph vascular space involvement.  The doctor explained this to me as the cancer is on the highway but not yet in the nodes.  It increases your risk of spread and I would think positive peritoneal washes would be similar.   I had chemo, pelvic radiation treatments and internal radiation too at MD Anderson.  I will be 2 years out in February......   Find a gynelogical oncologist you can feel comfortable with and make sure you can get all your questions answered.  

 

Cookiemookie
Posts: 6
Joined: Oct 2011

I was the same stage and grade of cancer as you.  I also had positive washings.

My gyn/onc referred me to a rad/onc.  Was told I could do 3 bracys.  Was given lots of facts and stastictics.  I chose not to do it.

My gyn/onc put me on Megestrol for 6 months because tumor tested positive for estrogen.  This was May 2011.

I also had a radical hysterectomy,bso,56 lymph nodes removed also my omentum.  All were negative.

All of my checkups have been great.

Having positive washings is a very gray area.

 

Double Whammy's picture
Double Whammy
Posts: 2338
Joined: Jun 2010

It really sounds like that's where you are.  The good news is the type of cancer, someone here called it the "garden variety".  That's what I had and the prognosis is really good.   The bad news is it was cancer and it is unpredictable.   I'd say the positive wash was not expected given your stage, yet yours was positive.  Your grade was not grade 1, but it wasn't grade 3, either.  The positive wash is concerning to me, but I'm not a gyn oncologist.  I would want as much information about that as possible, tho.  It will probably always be in the back of your mind no matter what treatment you have because well, it wasn't negative.

I think one of the most important part of anyone's healing is their relationship with their doctor.  I can almost guarantee you that a second opinion will be better because that person will not know all the anwers to your case, and the purpose of a second opinion is to discuss treatment options and diagnosis and that's what you will do.  Regardless of your interactions with your current doc, with your path report being so "gray" (can't think of a better word), I have a feeling treatment options will pretty much be left to you and you need to have as much accurate information/statistics/expertise under your belt to make those decisions as possible. 

I hope you will get a second opinion as soon as you can.  I'd keep your next appointment with your surgeon and you can be better prepared to discuss her recommendations in the context of having the second opinion.  It will force that conversation and you can maybe better weigh pros and cons.  You would not be starting any adjuvunct treatments until you are cleared from surgery, anyway, so you have time.  I know it doesn't feel like it, but you do.

Your surgeon's behavior sounds inexcusible (dear God, did she need to use the bathroom?).  I don't care how busy they are - they know how frightened their patients are.  I had a sort of rocky start with my gyn oncologist.  I love him now.  I can now look back on those initial encounters from a different perspective, but at the time . . .   

Bet of luck.  It's difficult to find peace when things are so uncertain, but you're taking action to get there.

Suzanne

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