Moli at another cross roads and mentally crying out loud.

molimoli said:

Cuculigata I believe it, Be hopeful with your treatment,

It is what we have,  I wish you much success , Try not to be distressed about the hair ,it will grow back for sure.We will be with you all the while just reach out we are huggers, the ladies here are good with breaking falls, hope your low days are few.   HaHa! I don't know about brave. I have seen cancer cause people to eat their words about treatment many times, We may have to redefine brave moving forward, but I am going on a diet I am not eating  any words,we'll see,  OOOOH I NEED JE--SUS. ( eyes rolling up to the sky) 

                                                                                             Feel the hugg. Moli

                                                                                    

I deal somehow with the hair loss.

On Friday is my second chemo, and I don't remember what you ladies said about it...

Is it getting worse or could be better than the first?

molimoli said:

New scan / update

Hello my sisters, Good morning, This is a new  pit stop on  my journey,

THORAX

Scan report : There is no nodal enlargement

                     The pleural surfaces are clear

                      The central airways are clear

                      The  right lung shows no interval change 

                      The Left lung shows no interval change

                       No  interval change is demonstrated

There is no evidence for intrathoracic metastatic disease.

PELVIS :          No liver mass, pancreas,spleen,adrenal glands and kidneys are normal, no hydronephrosis ,no lymphadenopathy.

Impression      The  two Nodules in the anterior pelvis  are larger in keeping with progression. measuring 5.7 x 4.9  (was 3.7 x3.4)

                                                                                                                                             )         3.6  x2.6   (was 3x.2. 2)

            That's the report, I did not get to see my usual oncologist she sent her fellow to talk to me  as they sometimes do . The fellow doctor started off by telling me that "You have many small tumors and 2 large one and we think you must have chemotherapy ,we have to start asap."  I asked her where the many small ones are  she couldnt tell me ,I immediately knew that her job is to frighten me into chemo, I felt Dis-appointed that a doctor would bear false news  to have their program fed . I immediately asked for the oncologist to see me as I needed to discuss surgery ,I knew she was in the unit ,the fellow offered to relay my message to her . The fellow returned to say the oncologist  was busy and that they run a chemo clinic  and since it is obvious that I am not signing up today they can't do anything for me until then,I asked her to  transfer my file to the surgical oncologist that had offered to review and possibly do surgery if there are no other masses found. I again asked where the other many masses are,again the question was side swiped. not a good sign for me, an obvious sales pitch,I asked the success rate that she has seen from the  treatment proposed, she said " 25 % will  gain average 6 months of ned,75 %  we are failing as they will progress through treatment with this kind of  cancer ,all over the world "   for that reason I am out so I told her that at this time  my answer is still no to chemo and thanks for transferring my file to the  surgeon, She was not pleased at all but neither was I.,so we are even, I fully understand that my oncologist is the head of the chemo dept,is very brilliant  with good bedside manners and experienced but  chemo is the business they run,and chemo is the brute I am running from. until such time that it catches me by default.

 

Before leaving the Hospital I  obtained a copy of the report and nothing in it stated that I had MANY ANYTHING. and I am a lot annoyed at the tatics for its smell of dishonesty.

My appt. with surgeon is on the 14th so i'll see. If she can't or won't take the 2 masses before they start compramising other structures I will go hunting for a good surgeon in another hosp., we have many good cancer surgeon and centers in this country.  I am on team Moli,  So my sisters ,how do you suppose I can keep the new masses away for now? any suggestions welcome.

I repeat ,We are all different people and my decisions on treatment doesn't mean yours is wrong ,I may be dead wrong (literally ) but I will be doing the rest of my life my way , Informed, stepping out of the box, opening my mind , living  and fighting..

 

 

 

 

Impression : There is no strong evidence for intrathoracic Metastatic disease.

Moli, I truly understand your frustration.   Right prior to my 5 year mark, I had a new gyne/onc because my original one retired.   I saw this guy several times and still hadn't gotten the warm fuzzy feeling nor did he ever do any of the exams.  He always had his interns do it.   So when I had a scan (which previously this doctor said was fine) reread because the report said I was an 80 year old woman (at the time I was 49), when he got the report back he said I had a recurrence.  I have had a small soft tissue mass that had been there.   I wanted to meet with him to discuss this stuff.  When I got there, all he wanted me to do was sign the paperwork, get a PET Scan, schedule the biopsy and he told me that I would need chemo to shrink it and surgery and that I would end up with a permanent colostomy.    This is the same guy who didn't know where my paperwork was when I got there and never even performed an actual exam on me.   He wanted the biopsy done in two days because he was going on vacation.  Needlessto say I said no.   I still had a port and when I went to get it flushed, they said no you are to get chemo.   I said definitely not.  Just a port flush.   Because I didn't go get the biopsy, he wrote on my chart client seeking help elsewhere.   Also, he wanted me for a study too.

Then I went to another hopsital and had the biopsy which came back positive.  But this doctor used to work with the other one and wanted me back over there.   I had to leave the state altogether because I didn't trust anyone by this time.  I was also told that it was inoperable.

I went to another doctor in another state.  They retested the results which were positive but he said he thought he could do the surgery and a short one at that.  He did the surgery and the mass itself turns out it was benign.  He did find a lymph node that had microscopic cells in it though.   From that day forward, I have been on a wait and see approach.  I did not do any type of treatment. (2010)

Currently, I have another soft tissue mass.   Originally it was 2.6 x 1.6 cm with a SUV of 2.4 (on PET scans) it is now 6 x 2.1 cm with a current SUV of 3.4.   I have had 5 PET scans since last year.  It has also caused hydroureternophrosis for which I now regularly get stent changes for.  I had the mass biopsied in April of 2014 but the part they biopsied was negative.   They couldn't biopsy the part that lit up on PET scans.  They still think it is just scar tissue.

However, my urologist wants to do an implant surgery (removing my ureter and replacing it into another part of my bladder so that I don't have to have stent changes every 3 months).   My gyn/onc now wants to be part of this as he can take a biopsy of this mass while they are in there.   This way we can be sure that it is nothing to be concerned about.

I get frustrated because the last 3 PET scans I feel they only cut and paste the results.   I get something like "No significant interval increase"   What does that mean?   Was there SOME movement?   Was there an increase, just not intervally?   And if they say that each time what is the size of it now because they don't give the size?

Also, everytime I go to a doctor with a problem, they want to push drugs right away.   I don't use them unless I absolutely need to.  I want to know the real cause of all my problems, no masked them by taking drugs.  - Sorry for my little rant.

MOLI, I know you want to know what you should do with regard to your masses.   All I know is that the one I have for me to remove it would be a MAJOR surgery.   I have so much scarring that they really don't want to do anything unless they have to.   Have you had a PET Scan?    This can tell whether or not there is active cancer.   You don't want to take chemo if the masses aren't active.  I know they are growing but so did mine.   

Sending you thoughts and prayers that you can find a solution that you are comfortable with.

All the best,

Kathy

Cucu me said:

thanks for the whole support

I deal somehow with the hair loss.

On Friday is my second chemo, and I don't remember what you ladies said about it...

Is it getting worse or could be better than the first?

cuculigata, we are all different, and with that said, you are going to surprise yourself when you see how strong you really are.  We are all cheering for you.

Cucu me said:

Moli is brave

Believe it in or not I started chemo on June 17.

Today I noticed my hair started to fall...

Yeah,such a journey we have.

I've lost it twice in chemo .... head, eyelashes, and eyebrows.  Funny, but the only part that bothered me was losing my eyebrows.  Eyebrows really define your face and I'm not a makeup kind of gal ... so I just did without.  But everything grew back, twice.   Two advantages is that I also lost my "menopause mustache" and I didn't have to shave my legs for awhile.  I guess there's always a silver lining.  Of course, now I'm hairier than ever thanks to the estrogen inhibitor.  

I'm sorry to hear of some of ya'lls doctor/chemo experiences.  Since being out on "the economy" (outside of military medicine), I've had some great docs.

molimoli said:

Kathy G.Thanks for the well wishes and prayers because

I am going out on a slimber limb without a net , I'll need showers of blessings all day every day.So don't any of you renege on the prayers  , I need it in a bad way.

When I was young  and was defiant with my mother,she would roll her eyes, look at me with  a certain knowing look as if she got the answer to something ,point at me and  blurt out loud  "YOU NEED JESUS "  She was right then but I only know it now,for sure.  R.I.P  Mama G. I get it.

 

Kathy, nothing Happens in health care  without the say so and the go ahead of the multi billion dollar corperations  saying so , They won't ever be willing to let any one else in ,Small Pharmaceutical research companies with brilliant scientists from all over the world is constantly  petitioning and submitting new promising drugs for cancer and all kinds of illnesses  to the FDA  but they are not given the light of day.not even permission to run a trial with willing participants . Why?  Because money talks and talks and won't shut up. No one wants to see their kick backs eliminated because they allow a newbie with  promising  or God forbid positive alternative on the block, no one. Think about it.

UPSC has been around and recognized as different  for many years yet we are still piggy backing on ovarian cancer  so-so treatment, Why, because we are too small in numbers , too distressed about our plight , too timid to upset the applecart of the very people we rely on for treatment to cry out loud enough to be heard.  so they dont have to do thousands of clinical trials for us with new manufacturers when they can just sell us what they already have,Chemo and Radiation combination that is woefully lacking for most.

Oh what a beautiful thought I am thinking,That one day UPSC and all other uterine cancers will be as important as breast and heart or even just as important as damn acne, for crying out loud I am mad as hell.      Nuff love ladies ,I am too pumped so I better go to bed, Yes I need Jesus,

Hi-

Some questions and food for thought that might raise some questions for discussion with the surgeon.

I recently spent a lot of time with my bff who had kidney cancer mets and I learned a couple of things from her thoracic surgeon (she had lung mets) at Stanford.  She was on an oral chemo for 6 months and scanned often before they concluded that she had only a single nodule in her lung and that surgery would give her the best quality of life - and a 30% chance of a cure.  I realize that this is kidney cancer - not UPSC.  But what was interesting to me (because I asked lots of questions) was that the thoracic surgeon explained that Kidney cancer can sometimes metastasize differently than other cancers, that it can often be a single lesion only and that in the case of most other cancers, once there is one lesion noted, it is assumed that the "horse is out of the barn" and that lesion is simply the only one that is large enough to show on a scan, that there are other cells elsewhere but they haven't grown large enough to show up.  That is why chemotherapy is typically recommended vs. surgery.  As you know, lots of cancers like to take up residence in the lung, but he typically does not do surgery in the case of other cancer mets.  This may raise some questions for you about why the Fellow was assuming other small lesions that were not noted on the scan report. 

I also asked if there wasn't a danger of that lung nodule metastasizing while they were waiting for her to complete a course of oral chemo.  He told me that the mechanism of metastasis is not fully understood, but they don't think that (in her case the lung nodule) the mets make more mets (and remember, this may be specific to kidney cancer) that cells had already metastasized from the getgo and it had just taken a while for them to settle and grow.  In her case, she was 5 years post surgery, and that was in her favor - the length of time it took to show up.  The oral chemo was given to hopefully kill off anyother rogue cells that might be elsewhere before they found an opportunistic place to plant themselvs.

And the bottom line is it's all a guessing game with this cancer stuff and all they have to go on is statistics.  We're all different and we all respond differently.  I hope the above information (which I may have misunderstood) might raise some questions for you to have a conversation with your surgeron about.  Basically - why or why not surgery?

Best,

Suzanne

Abbycat2 said:

You were awake rather early, moli!

Good Morning, moli,

 

I had 6 cycles of both Carboplatin and Taxol, so I can't answer your question.  However, I do believe that the Taxol is what caused my incredibly severe lower back pain while undergoing chemo treatments.  I ended up having two epidural shots spaced strategically between chemo treatments.  I was really miserable.  I can remember not being able to stand or walk for more than a few minutes at a time.  It was tricky taking a shower, even.  The pain would come on quite quickly and felt as though someone was trying to cut my leg off at the hip with a knife.  The only thing that helped- before I received the epidurals- was sitting with my legs elevated.   I am certain that the Taxol caused my neuropathy in my toes and the balls of my feet.  The neuropathy has not improved since chemo ended in March, 2014.

I hope that you know that I often think about you and your cancer journey.  I pray that all goes well for you, moli, and that you find joy in living each and everyday.   Yesterday, I was thinking about the word "enjoy" and what that means to me.  When I enjoy something- swimming for example- I am experiencing a form of joy.   It struck me that it is often the smallest and most inconsequential things in life that bring me the most pleasure.  This cancer journey is as much emotional as it is physical.  I am now saying such statements to myself as "Stop it!" when I begin to dwell on the negative aspects of this journey.  moli, you are such a beautiful and strong woman and I admire your strength and determination.  Keep up the good fight!

Warmly,

Cathy

Moli, that is quite an honest and straightforward explanation from your surgeon.  What is your next step? 

Sending best wishes,

Suzanne

Abbycat2 said:

Thanks, moli

A long, arduous journey is less so with a friend by one's side.  Thanks for joining me in my journey and for allowing me to participate in yours.  Just wish our journeys were overseas and not with cancer!

nuff love,

Cathy

I agree!  This is not the girls trip I had in mind!  But good things are happening because of it and for that I am grateful.  And Moli, I love your doctor - mine have always been very straight with me which makes it so much easier.  I hope you enjoyed your vanilla ice cream.  i do the same thing too from time to time.  

Hugs - Anne