Adencsarcoma with sarcomatous overgrowth of lsiomyosarcoma

Dear Annabella Rose:

So sorry to hear what you are going through.   One advice I can give you, watch what you google on the internet.    I find this site can give you the most up to date information and there are a few other links linking you to CDC and NCIA.   Most of the stuff on the internet is way outdated and has changed dramatically.   New advances are made every day as you will find from the posters here.

I first of all would seek a second opinion.  Go out of the current health system you are in and seek an opinion.    If you stay in the same health system, sometimes the doctors just look at your records and agree with your first physician.  I had that happen to me.

With regard to taking chemo and/or radiation, that is definitely a hard decision for one to make.    I was diagnosed with Endometrial Adenocarcinoma Stage IIIa, Grade 2 (found in uterus and ovary) and it was suggetsed to me to do the chemo.    It was my choice and after great deliberation I decided to do the treatment.   But I didn't have the other health issues that you have.   With the chemo, you will become very fatigued and depends on the type of chemo.  Since you are very sensitive to medications I would really do some research into this.    Did they do a tissue assay of your cancer?   This will tell the physicians what type of medicines work best.   Ask about this.

With the pain with urinating, have you checked to see if you have an infections?   I would bring this up to your PCP.  Also with bowel issues, you can develope scar tissue which presses against the colon and other intestinal parts causing pain.   I have this.

For now, take a deep breath.   You start making the decisions.   One by getting a second opinion and then make your own decisions.  When you are in control, you will be able to make more decisions when they appear.  Finally, you have to be comfortable with your physician.  

Sending you hugs.

Kathy

Annabelle Rose, you have quite a bit going on and chemo / radiation, not unusual for agressive cancer even in the early stages, is an attack on your body.  You had major surgery, so please don't be too hard on yourself about a slow recovery - it takes longer than you think.  Be careful about what you read on the internet, as said already, it is dated. 

It sounds like you are very familiar with your body and how it handles drugs, so when you go for your second opinion, make a list of your concerns and ask for them to take all your health issues in to account.

Please let us know how your visit goes and what your decision is.  We are here to lend an ear and a shoulder.

Annabella Rose said:

Thank you Kathy

I hate it when the doctors look at me and question why I'm still not feeling well after the surgery. He did an internal and said everything is healing properly so I should be doing everything in life like before the surgery. I am trying to do more, walking and light chores but it gets painful and so fatiqued by time anything is done.

i'm sorry that you had the same recovery time but I'm glad you shared with me because now I know I'm not the only one and God Willing, I'll get back to my normal too.

The cancer and treatments has really shook me up. The Doctors first told me before the D&C that he was 99.9% that it wasen't cancer. Then 4 days later calls and tells me it is cancer and that he would have to do a radical hysterectomy because of the type of cancer. Then after the hysterectomy he was so happy for me because he found it hadn't spread so he tells me that I'm cancer free and I wouldn't need any treatments. Then I went to the oncolgest and he to said how lucky I was and didn't need any further treatment. While he was explaining how lucky I was his student Doctor who was sitting next to him was going over my pathology report line by line and looked concerned. He tried interrupting the oncolgest to show him there was something not right on the report. Finally he put the report under the doctors nose and said to him, look here and here. The report was conflicting from the first page and then what was said on the last page. The oncolgest then got quiet and then asked my husband and I to come back the following Tuesday because he had to have my slides from pathology redone to figure out what's going on. Yikes!

when we went back he explained the confusion and said I need to have the cancer and radiation. We were shocked how one minute he's congratulating me and the next such discouraging news.

So of course I asked for a second opinion. And so we wait and wonder...but I know now not to do research with google.

 

What an awful experience.  shakes your trust in the whole medical system.  Do get the second opinion and ask for copies of everything.  Reading them will be intimidating at first but you will become educated.

NoTimeForCancer said:

Annabelle Rose, you have

Annabelle Rose, you have quite a bit going on and chemo / radiation, not unusual for agressive cancer even in the early stages, is an attack on your body.  You had major surgery, so please don't be too hard on yourself about a slow recovery - it takes longer than you think.  Be careful about what you read on the internet, as said already, it is dated. 

It sounds like you are very familiar with your body and how it handles drugs, so when you go for your second opinion, make a list of your concerns and ask for them to take all your health issues in to account.

Please let us know how your visit goes and what your decision is.  We are here to lend an ear and a shoulder.

I agree, I would seek a second opinion most definitely!

Annabella Rose said:

This was my second opinion...I forgot to post

I went for my second opinion yesterday. It went bad.
This gyn oncolgest is suppose to be highly rated and won awards for the best patient doctor. He also has many years of experience with gyn cancers including sarcomatous.
I had to wait for 2 weeks to get in to see him but I thought he must be worth the wait.

We got to the cancer center nervous but very interested in what he was going to say.
He was running 2 1/2 hours late. I finally get brought into the exam room and the nurse said because it was the first time with this doctor he had to do a full exam including a internal.
I told her I was there to go over my pathology reports not to have another internal. I had one just two weeks ago and everything was healing fine. She became very insistent so I went ahead an got ready to have the exam.

Again I waited there another 1/2 hour waiting for him. He finally comes in says hello very quickly and then asked me what brings me here. I told him I came for a second opinion about my pathology report and a treatment plan.
He looked at me and said I don't know what you are talking about. What pathology report ? I have no reports or records in this file! He was upset and very much annoyed because he was rushing and now I was taking up to much of his time 

I said I have a copy of it plus I wrote down a lot of questions for him. I told him that I was surprised and upset that the first oncolgest didn't sent him my records because they said that they did.
He got flustered and said, let me go look again if I can find it!
He rushes out the door then come back in a few minutes holding all my records.
He sits down and starts reading through them, but he was actually skimming through them quickly.

He said to me, yes, you have a aggressive cancer and the other doctor recommends chemo and radiation and so do I. 
I said, I wrote down questions I need answered and if after the internal exam, can we sit and go over them. He said quickly, yes,yes of course.
Boy did I feel like I was bothering him!

He did the exam which I have to say was very heavy handed. The word shove comes to mind when I try to decsribe it. Very fast and not gentle in anyway.

I didn't have time to even tell him ouch, you are hurting me!
He said to me ok, everything looks fine, sit up. With the help of the two nurses I was able to sit up.

I told him I wanted to talk to him about my health and the treatment plan.
He said I told you Chemo and radiation.
I told him I have two chronic diseases and I am concerned the the chemo will set of the M.S. And M.G. into a bad relapse.

So he looked through my records again to see if it says I have these illnesses. He finds it and says will, yes the chemo can make the diseases worse, maybe paralyze or make your muscles a lot weaker which can slow down your swallowing more and can even effect your breathing because of a weaken diaphragm from the M.G.

He then said, will you can choice not to have the treatments and just go with being watched.
He said right now you are clear of the cancer so the chemo and radiation is a precaution from it returning.
The chance of it coming back within 18 months is 50% if you don't take treatment and the cancer if it does come back can go to my stomach, liver or lungs. It's very unpredictable.

If I choose to get the treatments then the percentage goes down to 30% that the cancer will come back by 18 months.

I said, the other doctor said with treatment the % goes down to 6%.
He said, No, he is wrong!
So I said with your math I only have a 20% less chance of it coming back verses the 6% that the other doctor said.

He said, he was wrong. It a 50%, 50% chance that you will be back here with a reacurence by 18 months if no treatments are given.
He went on to say that it's the way you want to look at it, is the glass half empty or half full?

He was trying to hurry up the appointment and with each question I asked him I could tell he was getting upset. The answers he was giving me were very vague and a lot of I don't know about that, kind of answers.

Like one of the questions for example was, how should my diet change in order to help the cancer from coming back or spreading? His answer was, I don't know anything about that!

He kept getting confused about the names of the other diseases I deal with, I had to correct him once and the two nurses had to correct him two more times. He said twice I had fibromyalgia , which I don't, never did.
If I wasen't so upset and angry with him I would have felt embarrassed for him.

When he left I heard him telling the staff, come on, we have two more patients waiting!!

So how we left it is ,he order me a cat scan of my pelvis, stomach and chest. That will be in two weeks. The same day I will see him for the results and tell him my decision weather or not to take the chemo and radiation.

He also had said the chemo can cause damage to my heart so he wanted to get a muga scan first if I decide to go with his treatment plan.
I had asked him what type of chemo he uses. He told me in such a rush, that I don't remember so I am going to call his office today to ask his nurse so I can ask my neurologist if he thinks I'd be able to handle it without big problems.

 

I myself found second opinions difficult.  While you go to a big cancer hospital and with well known dr's somehow when they find out it is only for a second opinion and they aren't the primary dr you don't get as much attention sa you are hoping.  I was fortunate enough that my gyno/oncologis and oncologist team supported second opinions and they arranged them.  Because this happens enough from this office the Dana Farber INstitute tends to have a relationship with my dr's so they worked togher in discussing the treatment.  I would agree with are you comfortable with this Dr. in continuing care with your first impression.  I am not a medical expert but i thought chemo with early stage agressive cancer was to get microscopic cells not visible ones which scans don't show.  I have read from other woman's posts that a better test sometimes is a PET and dr's order this before treatment.  Not sure if this is an optoin to get a better baseline.  Others could pipe in as my Dr doesn't like to do them for early stage, even high grade or agressive types.    it is good you are talking to your other dr's about your treatment as sometimes dr's get so focused on their area of treatment tend to sometimes not treat the whole person.

i am sorry you have to deal with this stress on top of everything else you are going through

Annabella Rose said:

I talked to my M.S. Doctor

I talked to my M.S. Doctor last week, I wanted to know if he felt the chemo would do more trouble to the M.S. M.G.
He called me back which surprised me and said the nature of my diseases are from my immune system being too high which makes it attack my body. So he said most of the M.S. and M.G. are actual forms of chemo. He feels the chemo may actually help suppress the diseases even though I may feel weaker in the short run and will help me in the long run. He also said the percentages the oncologist are giving me with taking the chemo from it not reoccurring is very good! I didn't think it was but he said 20% less liking the the cancer would come back is huge and worth the side effects and fatique I may experience.
So, I'm still thinking about it and asking questions from as many as possible.

I also called my regular gyn and asked him what he thought about me taking the chemo. He said he was surprised to hear that the oncolgest feels that I need to because he was sure that all the cancer is gone after the hysterectomy, so he thought if I had a choice go with the check ups to keep an eye on things and no chemo. After I explained to him what both oncolgest said about the percentages of it coming back, then he said, well, they are the experts in sarcomas which is a very ugly cancer, so I should follow their reccomdations and take the chemo and if I can't tolerate it I could stop even if I can get through 3 rounds instead of 6 it's better then nothing. 

I went to my heart doctor and had my heart checked out and asked him if he thought my heart was strong enough to tolerate chemo. He took a couple of test and said my heart was fine to take the test and if I took the chemo that May harm the heart muscle they would be doing scans to make sure it wasen't causing damage and if it was they would change chemos.

So much to think about  I don't have peace about any decision right now. The truth is I feel like a deer in the headlights.
My swallowing has got ton slow again ( M.S.) and I have lost more weight since the D&C and the a month later the hysterectomy. I really have no appetite and when I do eat it takes a lot out of me because of the swallowing problem.

The oncolgest nurse told me not to worry about eating so healthy at this point because I'm too underweight and if I take the chemo I'd have no room to lose more weight. She said for me to eat anything that looks good to me and try to put on calories before starting the chemo.

But I thought eating healthy would stop the cancer from growing or coming back, especially the sugers, which I love.

I also called back my 1st oncolgest to ask him why his % was different from the second opinion Oncolgest about the cancer coming back after taking the chemo.
So far he hasen't called back, infact I called him 3 times and each time the nurse took my questions and said the doctor would call me back or she would with the answers, but never did. 

I feel there is a conspiracy going on with these doctors. They don't want to say anything differant about the Guru oncolgest at the cancer hospital because they had at some point trained under him or have worked with him with their other patients.

I think it's a good idea for me to see another oncolgest if this one didn't change from the first appointment with him. I'll give him the benefit of the doubt that he was just having the worst day of his life that day and I happened to be in his way.

I don't know if the cat scan is enough to show him if there is any cells of cancer hidden. That is all he recommended for now.

The way I'm feeling today is that I don't think I can survive the chemo even if they did find the cancer has come back. I don't have that kind of fight in me. I know depression is setting in and this cold hard winter is not helping my mood. I'm finding myself not wanting to invest my energy in things of this world.

Welcome to the site.  I feel so bad for you.  You have a difficult decision to make.  Your MS and MG  certainly complicate your decision.  Difficulty swallowing is another problem for you.  You may need to use your feeding tube to get extra calories in you so you do not lose any more weight.  A CAT scan will not show hidden cancer cells until the growth becomes big enough to be seen.  Microscopic cells will not show up on the CAT scan.  That is why many take the chemo to kill these microscopic cells that may be wandering around.   I found it interesting what your MS doctor said about the chemo suppressing the MS and MG.

I certainly understand your depression.  I hope you energy improves for you.  Feel free to express your fears and frustrations here.  Good luck in making your decision.  In peace and caring.

flyerette65 said:

Annabella Rose

Annabella I am so sorry you had to deal with such an uncaring doctor.  Sometimes many of them forget that there's a person on the other end of the surgical reports, charts and test results.  I do not know in which state you live, but I live in Ohio and I love my gynecological/oncologist. He has been practicing for 10 years but he listens to me and takes his time answering all my questions.  You definitely need to go outside of your network for another opinion.  Also if you are having pelvic pain I would recommend pelvic floor physical therapy.  In fact, I don't know why the oncologists don't recommend this therapy for all of their gyn patients.  It can be uncomfortable, sort of like a very long pelivc exam but it has helped me, plus they give you exercises and suggestions on how to get rid of the pain. Cancer is so scary particularly if you have a positive "abdominal wash" which as you probably know, means there are free floating cancer cells that have broken off from the primary tumor. That's why I was told I needed both chemo and radiation but after talking with the radiologist who acted as if I was going to die if I didn't do 35 external and 3 internal radiation treatments, I went back to my gyn/oncologist and demanded another scan.  They did a PET scan which showed no cancer anywhere so I didn't do the radiation. It's now 3 years, 8 months later and I have had, and am having some issues now and am kind of stuck in limbo while the urologist and gyn/oncologist try to figure out what is going on. But I'm happy with the decision I made not to have the radiation since it only gave me a 7% reduction for recurrence.  I'm sending positive energy your way (I do Reiki) and also prayers.

Barb

and so many decisions to make with so many variables. 

It seemed to me that my gyn oncologist "forgot" most of the other medical things he learned in medical school and it soon became clear to me that his job was to focus on the cancer and nothing else. He even said "we hand you off like a baton" one time.  Good that you saw your neurologist about the MS and MG.   And remember, gynecology is a surgical specialty, gyn oncology is a subspecialty of that, and it makes me wonder why so many gyns do primary care but maybe their training has broadened.   I dunno.  Basically, surgeons approach things differently than medicine folks, and they may even problem solve differently.  Again, I don't know.   I had the same experience a few times about feeling my gyn onc was too busy for me, but in hindsight he answered all of my questions and took very good care of that part of my body.  I am, however, hoping that March will be my last visit with him - just because I'm tired of it and I feel I'm really fine now. 

You probably have time to make these decisions facing you.  Trust your oncologist about the effects of chemo on your neurological diseases, trust your gyn oncologist to take care of your cancer within your parameters.  You might want to visit the nccn website http://www.nccn.org/ and also the American Cancer Society website http://www.cancer.org/cancer/uterinesarcoma/index, and be sure to post here because there is a whole lot of knowledge and support here.

About the diet thing:  And this is only my 2 cents.  A cancer fighting diet is just plain good for your overall health.  If your overhealth is improved, you will be stronger to fight whatever ails you.  I have made some changes to my diet, but I do still enjoy indulging and the simple pleasures (like ice cream) from time to time.  Your gyn oncologist is not going to discuss diet with you.  Ask to be referred to a nutritionist (they do love to refer you) if you want to discuss this more.  His job is to keep you alive and well with the tools at his disposal.  Or ask if there is a intergrative medicine person you can see if you want to do that. 

Good luck.  It's so easy to say to try not to be consumed by this, but none of us seem to have conquered that - it least in the beginning.  Just try to make thoughtful and informed decisions as best you can.

Best,

Suzanne

Annabella Rose said:

Last minute change in plans..

Last week we got up extra early to get ready for my cat scan and right after the doctors appt. I had done all I knew how to help make the best decision on taking the preventative chemo and radiation or not.

i even call my oncolgest office to see if they would change the Cat Scan to a Pet Scan because I read on here that the Cat Scan wouldn't give me the answers that I was looking for. That is, if the Cat Scan didn't show any new signs of cancer then I'd go with the watch and see plan instead of the chemo and radiation plan.

When I called ther office the nurse said No, the Doctor order you a Cat Scan and after you take the Cat Scan he would decide if you needed a Pet Scan, period!

so I felt at least I tried and the next morning got ready to go for the Cat Scan.

We were just about ready to walk out the door when the phone rang. I picked it up and was Greatly surprised to hear my First oncolgest voice asking for me. I said yes this is me and he said I have something very important to talk to you about, can you come into my office today? I told him no because we were just getting ready to leave for my Cat Scan and appt with the 2nd opinion  oncolgest to give him my answer about weather or not I was going to take the Chemo.

he then said, that's want I need to speak to you about, actually two things. May I go over these concerns with you over the phone.I said yes of course.

He said he knows the answers I'm looking for won't come out of the Cat Scan. I would need a Pet Scan for that.

the second thing is the Chemo that oncolgest wants you to have is a very outdated Chemo, all three of them. He said they were used back in the 1970's last time he seen anyone use them.

He said they have come up with much newer and persise Chemos that would do So much better and has less bad side effects.

I was stunned to know he took the time to call me even if it was the last minute and inform me of these things!

He said he was shocked along with his coleques that this very highly rated oncolgest with many years of experience would still be using these 3 Chemos. 

He told me He would order me a Pet Scan and then go over the results. He told me the names of the two chemos he has been using with great success and tolerable side effects on patience with the same rare cancer as mine.

So I said yes, let's do that and Thank you for calling me!

I then called the 2nd opinion oncolgest and canceled the Cat Scan and appt with the Doctor.

The next day the nurse from the the First oncolgests office called and we set up the Pet Scan appt..

This takes you up to yesterday...

I had the Pet Scan on Friday. Then I went to talk with the doctor for results and thoughts on the Chemo and radiation.

he went over the Pet Scan results first. He said everything looked clear up to when thet got to my lungs. He showed me that they found two hypermetabolic lung lesion, including a 1 cm pleural-based mass of the left anteromedial left lung SUV 6.7, and a medial right upper lung 8 mn nodule contiguous with the pericardium, 4.7 SUV. These lesions must be considered metastatic until proven otherwise.

So now they are setting up a needle biopsies of my lungs and at the same time they will put a port in my chest for the chemo that I decided to try.

of course the plans my change depending on the out come of the biopsies.

Does the needle biopsies hurt? Does the port in my chest hurt? 

He said these lesions would not have shown up on a Cat Scan and that it's good we were able to see them with the Pet Scan so we can find out IF they are cancerous or not. Plus if they are, what type of cancer to decide how it would be treated.

so back to waiting..

I Thank God this Doctor called me back. I feel like my prayers have been answered. God is in control and I feel safe knowing that.

Annabella, oh my, so much to cope with and so much on your plate ! The doctor who called you at the 11th hour is a gem ! I am very much impressed . I saw a doctor in Orlando , FL, for a second opinion - supposedly the " best " in Florida-  and was taken aback by his lack of decency, humanity and knowledge of my case. He didn't bother to read my pathology report and had the audacity to ASK ME what the report said!!!  My friend and I were disgusted with his "professional manner ". Quite frankly, I was shocked by his lack of preparation prior to my appt..  It made me wonder what his experience has been with women he has treated prior to seeing me .  Does he think we are all idiots, too much in awe of his brilliancy to question his approach?  I will NEVER expose myself to that A_s _ o_e again and regret that my emotional pain then was so raw and intense that it never occurred to me to file a complaint against him with the state regulatory board. 

 If you have been diagnosed with an aggressive stage 3 cancer then I suggest you do all that is appropriate to treat it, given your physical health.

Warm Wishes,

Cathy