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janaes
Posts: 800
Joined: May 2016

So my dad called the office of my Gynocological Oncologist today.  The nurse called me back and I was able to find out why my gynocalogical oncolist had told me I didnt need to have chemotheropy.  The nurse told me that my  doctor said that the cancer is not a sarcoma.  She said it was the more common kind of of uterine cancer and that is why he didnt recomend chemotherapy. So the nurse said that the doctor thinks that my radiation doctor might still think my cancer was a sarcoma which was origanally thought i had right after sergery.  Im wondering what you guys think of this information.   Im really in need of some help so i can make a desision.  Im feeling more ready to get this stuff going,

txtrisha55's picture
txtrisha55
Posts: 696
Joined: Apr 2011

Get a copy of your pathology report and read over it to see what it states.  Then if still not sure get a second option from a different gyn onc doctor.  Also most hospitals now have a board they go to so all the cancer doctors can have input to make it a team effort.  If they have that ask for that to take place.   Having a few rounds of chemo would not hurt but having the radaiation can effect other organs and bones.  But my thing is ask questions and be your own advocate on your health.  Get copies of all your test, surgery reports and the pathology report.  It is your because it is your body, you have a right to them.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I think you really need to get clear on exactly what your pathology report says before you can make a rational decision here.  Your post yesterday said endometrioid adenocarcinoma which is not sarcoma.  Why does your radiologist think it is sarcoma?  Is that mentioned anywhere in the report?  

Also, was the grade of your cancer upgraded after surgery?  I know that sometimes happens and could be why both grade 2 and 3 are mentioned, but you need to look at the report carefully to see what those grades are referring to.

I thought endometrioid adenocarcinoma was not a Grade 3 cancer but I could be wrong about this. Anybody want to chime in on this?

In any case, I would want to be absolutely certain of the diagnosis/pathology before I made a decision.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

janaes, the nurses at my gynecologic oncologist's office were great.  I had one that I could call and ask questions and hopefully you were given that too.  Maybe you can ask them:  the Stage of your cancer, the Grade of your cancer, and what Type of cancer.  I think a pathology report has a lot medical-speak, which can be confusing for your average person.  

If you get the Stage, Grade and Type, I think we all would be able to help answer some of your questions.

Believe it or not, there is a Grade 1 cancer that is refered to as "typcial garden variety type" and they don't give any treatment for that.  It is what Editgrl was referring to in her post.  Here was a pretty good link from the American Cancer Society site:

http://www.cancer.org/cancer/endometrialcancer/detailedguide/endometrial-uterine-cancer-what-is-endometrial-cancer

janaes
Posts: 800
Joined: May 2016

Thank you for all of your posts.  Notimeforcancer, its good to know that there is a type of uterine cancer that doesnt need treatment for.  That is what is exactly what is confusing to me ( the grade of my cancer).  When the nerce called ealier I asked her if she could tell me the exact mane of my cancer and she told me that would have to be something you need to ask the doctor.  I felt stuck after that because my doctor is not that avalible and its hard to get in to see him.  He works in another city and is only down here once a week.  I guess I was hoping she could ask the doctor for me and be able to tell me what he said.  I guess I was so shocked by her repy that I didnt know what to say and just hung up.  She did tell me that the Doctor called my cancer a garden varity type but I still want to know the grade.  I think that would help.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Can you call your radiologist's office?  Since he is the one who wants to treat it more aggressively, he or his nurse might be more accessible to you.  I just think it's crazy that you can't get a clear answer to the type, stage and grade of your cancer.

janaes
Posts: 800
Joined: May 2016

Imight try that tomarrow thanks

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

was what might be called "garden variety.". Endometrial Adenocarcinoma. Clear lymph nodes. No Cancer cells found in other parts. Only 35% intrusion into the muscle of the uterus (myometrium). Grade 1. Stage 1-A. No chemo and no radiation recommended. Just follow up exams every 3 months to monitor for any surprises because a very few patients like me do have recurrences. I know exactly how lucky I am; some with my same stage/grade get a more aggressive approach. My point is that there are many different ways to attack this diagnosis.  Good luck. Whatever you do, we stand with you. 

janaes
Posts: 800
Joined: May 2016

So I called the radiation office today and asked the nurse the grade of my cancer.  She told me i have uterine cancer stage 2 grade 3.  That is what it looks like to me on the pathology report.  Im still confused why my gynocalogical oncoligist said it was a garden variety cancer.  I am trying to get another doctors opinion.  He is a chemotheropy oncologist that works with a whole different facility.   My dad might have a connections with someone in the office to get a quicker responce.  I will find out  more about that on monday.  I do have another appointment I think it is tuesday with the chemotherapy oncologist that my radiation onclogist had recomended.  My plan was to just go there even if I didnt have the 3rd opinion yet and just get my questions answered.  Im a little wooried the doctor my try to talk me into doing chemo even though I am not and wont be ready for that.  I really want this 3rd opinion before I make my desion to even do chemo.  I just dont think that asking him questions would hurt.  What do you guys think?

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

is usually a grade one cancer but not always. I was surprised to learn that Endometriod adenocarcinoma could actually be a grade 2 or 3. I don't think that is common, however.

I agree with advice you have already received- have your tissues examined by another pathologist. I had Moffitt in FL examine my removed tissues for a second opinion and learned that my cancer had actually spread slightly more than 50% into my myometrium. From what I've read- and I have read a lot of research studies -it increases my odds of a recurrence to have it invade more than 50%. 

MonkeyBubbles
Posts: 1
Joined: Apr 2011

If there is a question about your pathology and you're not getting straight answers from your onc, you can do one or both of two things.  You can get a new onc who will explain all of this to you, or you could send your path slides to a new pathologist.  I had both done.  My new onc sent my slides to the #2 gynecologic pathologist in the country and we both felt secure in the diagnosis. 

From what the nurse said, "stage 2, grade 3", that implies a high grade tumor like sarcoma.  It is conceivable that your doc got you confused with someone else.   

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

Seems incomplete to me.  Maybe it's just the way it is interpreted.   You should ask for a copy of it (a typical request) so that you can see the full type, grade, and stage.  The report has so much valuable informaiton you may need now and in the future. NO, asking questions won't "hurt."  You SHOULD get all the additional opinions you want to feel confident in the path you will take.  You have time to check on these.

Mary Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Ask as many questions as it takes for you to understand your diagnosis and your treatment options.  If any doctor has a problem with that, get another doctor.  You should not be rushed into anything.  If you are stage 2, that means the cancer had spread to the connective tissue of the cervix but not out of the uterus.  Grade 3 means it is a high grade cancer.  It could be serous carcinoma or UPSC, carcinosarcoma, or a high-grade adenocarcinoma among others.  None of these are "garden variety" cancers.

Is your dad or somebody going with you to your appointment on Tuesday?  It is always helpful to have another set of ears to hear what is said, because there is so much information.  Ask him/her to explain the pathology report to you and explain what ALL of your treatment options are.  This is your opportunity to get all of your questions answered and don't leave there until you do.  

Chris

janaes
Posts: 800
Joined: May 2016

Thanks again every one.  After I talked to the nurse yesterday morning it was starting to bother me that my gynocological oncologist didnt see grade 3 as something that needed much treatment, especially no chemo. It took me most of the day to figure it out, but i called my insurance i/2 hour before closing to see if they could help me find a gynocalogical oncoligist for a second opinion.  To me it is sounding like i need some chemotheropy,  I live in a good area and my radiation oncloligits office is in the hospital which believe it or not is literally 15 blocks from my house.  It is so close.  I could choose to do chemo there too.  The proglem is if i decide I dont like the radiation doctor and dont want to use him i have to go prabably about 1 hour away to do it.  When I called the nurse at this radiation doctor office yesterday and after I asked her whate grade my cancer was i asker her about what my gynocalogical onclogist said about my cancer being the garden veriety.  She told me that my gynocalogical oncoligist should not have even diagnossed the cancer at all and the diagnosing the cancer is not even a gynocaloggical oncologist job.  I didnt like that because that is not what i heard before.  In fact ive heard that they can bee very valuble,  She told me he was supposed to just take the cancer out and that was it.  I was upset that she said.  The doctor whom was alot more repectful than her(whwn I saw him before) even said that I should go to a chomo oncologist to see if I should have chemo and the he would know better than the gynocalogical oncologist.  I just want to believe that the gynocalogical oncologist would play an importan role. 

Anonymous user (not verified)

A gynocologist/oncologist is certainly the person to diagnose the cancer, and bases the stage (how far it's grown in your body) and grade (how normal to abnormal the cells look).  My gyno/oncologist is leading my medical team, he was the one who said chemo.  He did say if I wanted to get chemo closer to home, that any infusion facility can administer the chemo.  But HE was the one to decide how many and the chemo drugs (taxol/carbo for 6 sessions), he also lowered my dose when I was having troubles tolerating the chemo.  If I needed radiation, he would have recommended it and would have oversaw my entire treatment.  Do you have an appointment with him?  If not, make one soon.  Grade 3 is always indicitive of chemo unless you can't tolerate it for some reason.  It does sound like you have a copy of your pathology report.  Please read it and look up everything it says, if the cells looked normal it is more a garden variety, if the cells were differentiated, it would be a higher grade.  Mine said my stage and grade.  Also, you will get more information with a face to face meeting with doctors unlike calling and talking with the nurse.  Actually, they should not be discussing stage, grade etc with you.  They should always refer your questions to your doctor and HE will tell you.  Hugs Nancy

txtrisha55's picture
txtrisha55
Posts: 696
Joined: Apr 2011

Wow!  I had a OBGYN do my D&C.  Once it came back as cancer she referred me immediately to a gyn onc dr.  The Gyn Onc Dr si the one that did the surgery and gave me the results of the pathology report.  She also gave me the options of chemo and told me I did not need radiation unless it came back.  I saw her every 21 days during chemo treatmetns then once done saw her every 3 months for 4 fours now I am down to every 6 months.  I would get another doctor and make sure it is a gyn onc dr.  I do not know where you are but if close to Dallas I would give you my dr name and number.  I have referred someone else that lived in Waco because she was not sure of what her dr was telling her.  She got a second opinion.  Sent all her files to my dr and then came up for a meeting.  She did not have to have any treatments because hers was stage 1A and grade 1 cancer so it worked out well for her.  Just saying if you need a second get it.  IT is your body and you should be your own advocate. Good Luck trish

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

and reports the findings. My path report clearly states that I had grade 3, stage 3A, uterine cancer. My gyn oncologist reported these findings to me and discussed with me a treatment plan. My gyn onc at no time studied my tissue samples (slides) himself as that is not his specialty.

janaes
Posts: 800
Joined: May 2016

Yea!  I think any ways.  I defenitly have a lot a emotions so excitment isnt really the word.  I guess Im just relieved today because I saw a Chemotheropy Onclogist and he had  acopy of my full pathology report and a copy of another pathology report that was done when I had my byopsy when they found the cancer.  It said the name of my cancer and he explained to me why i needed chemotheropy.  His explanation of why I need chemo made since to me.  It went along with what I was reading and thinking.  I liked what he said.  Now do I want to do chemo?  No  Ive spent the afternoon trying to process all these emotions I have.  Ive been crying, talking with family, and deciding what I want to do to go forward.  I am a single mom with two kids. 10 and 13 years old.  I recently became single just before all this cancer stuff came out so I am trying to find the support I will need.  Im going to find out wednesday i think when I will start.  Im scared.  Im scared because I did chemo 20 years ago and know what it is like.  Im using different drugs he said which Im hoping will be better on me.  

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Janaes, you can do this. Chemo is so different today than it was 20 years ago. They know how to manage the side effects better now and there are so many options if one chemo doesn't work. If you trust your oncologist and he thinks this is your best chance then please, please consider it. Of course, we will support you no matter your decision.

You are stronger than you think. We will be here to support you no matter what. Please lean on us. Kim

txtrisha55's picture
txtrisha55
Posts: 696
Joined: Apr 2011

You can do it.  The drugs are different than 20 years ago.  I know that it will affect everyone differently but try and keep a postive attitude and take it one day at a time.  I went back to work and worked through mine so I know it can be done.  Good Luck. trish

janaes
Posts: 800
Joined: May 2016

I went and bought a wig today.  When my sister offered to go with me yesterday I got a little excited and thought doing that would be a step in the right direction to having a better attidude about this so I asked if she wanted to go today.  we aranged it and my dad and his wife came.  Although I felt sad that I had to get a wig and know one else that was there needed one nor wanted to buy one, I found the perfect wig.  The lady has to order it because the style I wanted wasnt in the color I wanted.  It will be here in a week.  I dont think anyone will notice I even have a wig because it looked much like my current style and color. 

txtrisha55's picture
txtrisha55
Posts: 696
Joined: Apr 2011

Congratualtions of the wig.  It was just to hot here in Texas the year I went thorugh 100 degrees everyday the summer of 2011.  It should be here before you have your chemo or if after the first treatment before it might start coming out.  Good Luck. trish

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

To find a wig in the style and color much like your own hair. I found 2 wigs that I really liked when I went to the local American Cancer Society office and, in addition to the wigs, I walked away with lots of head coverings. I found that I needed to wear head coverings when I slept as my bald head got cold at night. 

 

 

 

 

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Congrats on getting a good wig! I also got one that looked a lot like my own hair. It has really helped my attitude. I even had false eyelashes put on before I went to a special party recently and it really made me feel good, like my self. There were some people that didn't even know I had cancer and didn't realize that I was wearing a wig.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I was reallyl happy with my wig, too.  I got lots of compliments on my new hairstyle from people who didn't know I was bald!

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