gyn/onc and what to do...help please

meggg

Hi everyone, this is my first post to CSN

In April 2010, at 39, i had a hysterectomy done by my gyn, not a gyn/onc.  The endometrial tumor was rather large at 10x5 cm, and was a grade 2, with a nuclear cell of 2-3.  I not only had no lymph nodes taken but also had no "experienced eyes".  The gyn/onc i was referred to, i can say in the two times i met with him, had the mindset of "out to lunch".  When i finally connected with another gyn/onc, eight months later, he could not believe given the size of malignancy and more agressive grade that i had not had any staging surgery done and said i would have a significant risk for recurrance.  About 4 months ago, i began having a pain in my left pelvis/hip and low back, intermittent at first but has become much more troublesome along with long time bowel problems (constipation etc).  I recently (8/7) had a routine 6 month appt with the gyn/onc, the appt was a "train wreck", he had a student doc with him, which i don't mind, but made matters worse.  Because gyn/onc are so limited, in my area, the appt times are way to short, and i can accept that too, what i can not accept is this doc being negligent.  He brushed off everything, i brought to his attention regarding this discomfort i am dealing with.  He told me to see an orthopedic doctor, and i am thinking, this could be a pelvic lymph node etc pressing on a nerve, am pretty sure not like a bone/orthopedic situation, it feels different and i have, what feels almost like pressure in the left pelvis.  I brought up possibly having a pet scan, i have never had one, and he practically laughed at me.  This is not the first time, i have seen this cavilier attitude in him or brushed off concerns but this is the first time i have been in this kind of pain.  I went home and thought about it for a day and decided to schedule another appt, where both my husband and myself can speak to him.  I would like to request again a pet scan, but am looking to see if that would be useful or maybe an mri is better, i have have had ct scans, but actually ct scans have missed different things occasionally, so i am not sure if i would be satisfied with just that or not.  Any suggestions/ideas would be super appreciated, thanks so much.

Sara Zipora

Don't give up, keep holding your ground

I was diagnosed in July 2010 with Stage IV stage III adenocarcinoma clear and mixed cell.

since then I have had three or four recurrences, been on carbo taxol, doxil carbo, I had a second surgery to remove a four inch tumor growing during chemo!

My bloods, including markers, were fine but the cancer was growing. I had CTs that were inconclusive, the only test that consistently 'tells it like it is' for me is the PET scan.  I asked for MRI but they said there is no slouch thing as a full body MRI and I require a whole body lookTo see off there are tumors growing in distant spots, as there were along my lymphatic system. I received radiation treatments to zap them.  I had four Radiation series.

Right now I get Pets once every three months. Recently they saw 'something' pushing on my ureter causing kidney backup. I had anMRI of that area which was very helpful as it gave a clear picture of the scar tissue which was pushing on the ureter.i have now had sonograms to monitor these.

so my answer is dont take no for an answer and get the Pet scan!

Do go with your husband, and use a smart phone, yours or borrow one, to record the meeting. Today everyone can put their phone on the desk, while a tape recorder may cause problems.

you deserve the doctors full consideration and respect, he would want no less for him or herself!

This isn't the time to be polite, calm, and incredibly 'sweet', you have to save your life!

make sure the doc is clear about your intentions as they should be his too!

good luck,

Sara

p.s. Don't understand what's going on here with the fonts!

meggg

Sara Zipora said:

Don't give up, keep holding your ground

I was diagnosed in July 2010 with Stage IV stage III adenocarcinoma clear and mixed cell.

since then I have had three or four recurrences, been on carbo taxol, doxil carbo, I had a second surgery to remove a four inch tumor growing during chemo!

My bloods, including markers, were fine but the cancer was growing. I had CTs that were inconclusive, the only test that consistently 'tells it like it is' for me is the PET scan.  I asked for MRI but they said there is no slouch thing as a full body MRI and I require a whole body lookTo see off there are tumors growing in distant spots, as there were along my lymphatic system. I received radiation treatments to zap them.  I had four Radiation series.

Right now I get Pets once every three months. Recently they saw 'something' pushing on my ureter causing kidney backup. I had anMRI of that area which was very helpful as it gave a clear picture of the scar tissue which was pushing on the ureter.i have now had sonograms to monitor these.

so my answer is dont take no for an answer and get the Pet scan!

Do go with your husband, and use a smart phone, yours or borrow one, to record the meeting. Today everyone can put their phone on the desk, while a tape recorder may cause problems.

you deserve the doctors full consideration and respect, he would want no less for him or herself!

This isn't the time to be polite, calm, and incredibly 'sweet', you have to save your life!

make sure the doc is clear about your intentions as they should be his too!

good luck,

Sara

p.s. Don't understand what's going on here with the fonts!

Sara, thank you!!

Sara, thank you!!

First let me say, i pray for your return to good health and hope today is a good day for you!!!

Sara, you have put my mind at ease and now i feel more confident in my quest to get that pet scan and be heard.  Just as you have experienced, i have heard where blood tests/markers and imaging have been negative, inconclusive or showed nothing, all the while, it is growing.  I will let you know how i make out from my appt on monday (8/19). Oh and your right, we will be recording!!!

pinky104

Pain

There are many things your pain could be, including a combination of various conditions.  Pain in your hip might be bursitis.  Pain in your back might be sciatica.  I've had both for years.  The sciatica hurts more in the muscles than in the actual spine itself.  My chiropractor has told me that a back out of alignment can cause constipation, as well as a number of other problems which you wouldn't think would be caused by a back problem. 

Another possibility which is probably unlikely from the location of your pain is an incisional hernia which resulted from your surgery.  I had that for months before my gyn/onc finally was able to feel it.  I worked in one hospital but I'd had my big surgery in another hospital where there was a gyn/onc practice.  I followed the surgery with chemo at the hospital where I worked, as it was much closer to home. The oncologist at that hospital told me my pain was due to scar tissue.  When I had a follow-up appointment a year after surgery with the gyn/onc at the other hospital, I complained to him about it, and he found I had a small incisional hernia when he did my internal exam.  I had surgery about a year later and wished I'd gotten it done sooner.  Lifting things kept getting more and more painful.  I guess you could describe some of the feeling I had as a sensation of pressure.  If you get diagnosed with something like this, be sure your surgeon puts in mesh, as hernia repairs without mesh often don't last.

Of course, cancer is always a possibility, too.  If you can afford it, go out of the area to see someone else for another opinion. You have enough on your plate without dealing with an unsympathetic doctor.  My doctor is extremely busy, too, but makes the time to discuss my concerns.  If you want to discuss your home location on this site, I'm sure if there is someone in your general area who reads this who might be able to recommend someone to you.  I should mention that when I was originally diagnosed, my gynecologist recommended a specific gyn/onc who was tops in his field.  When I called that guy's office, he was booked so far ahead that I settled for his partner.  I later found out that the top guy had a rotten bedside manner, and the guy I "settled" for was much better.  I had stage IV b UPSC, and I'm currently NED three years after surgery, so I'm doing well.  I did fine without the "expert."

Try not to worry too much. It may be something less serious than cancer.  I hope for your sake that it is.

HellieC

Stay strong

I'm so sorry you've been experiencing such discomfort.  As the other ladies said, it can be any number of things, from scar tissue to sciatica - not necessarily a return of the cancer.

However, any woman who has had a pelvic cancer and reports pain or discomfort should have it thoroughly checked.  So please stand firm and ask for it to be investigated further, by whatever scan  is deemed appropriate. 

Kindest wishes
Helen

meggg

pinky104 said:

Pain

There are many things your pain could be, including a combination of various conditions.  Pain in your hip might be bursitis.  Pain in your back might be sciatica.  I've had both for years.  The sciatica hurts more in the muscles than in the actual spine itself.  My chiropractor has told me that a back out of alignment can cause constipation, as well as a number of other problems which you wouldn't think would be caused by a back problem. 

Another possibility which is probably unlikely from the location of your pain is an incisional hernia which resulted from your surgery.  I had that for months before my gyn/onc finally was able to feel it.  I worked in one hospital but I'd had my big surgery in another hospital where there was a gyn/onc practice.  I followed the surgery with chemo at the hospital where I worked, as it was much closer to home. The oncologist at that hospital told me my pain was due to scar tissue.  When I had a follow-up appointment a year after surgery with the gyn/onc at the other hospital, I complained to him about it, and he found I had a small incisional hernia when he did my internal exam.  I had surgery about a year later and wished I'd gotten it done sooner.  Lifting things kept getting more and more painful.  I guess you could describe some of the feeling I had as a sensation of pressure.  If you get diagnosed with something like this, be sure your surgeon puts in mesh, as hernia repairs without mesh often don't last.

Of course, cancer is always a possibility, too.  If you can afford it, go out of the area to see someone else for another opinion. You have enough on your plate without dealing with an unsympathetic doctor.  My doctor is extremely busy, too, but makes the time to discuss my concerns.  If you want to discuss your home location on this site, I'm sure if there is someone in your general area who reads this who might be able to recommend someone to you.  I should mention that when I was originally diagnosed, my gynecologist recommended a specific gyn/onc who was tops in his field.  When I called that guy's office, he was booked so far ahead that I settled for his partner.  I later found out that the top guy had a rotten bedside manner, and the guy I "settled" for was much better.  I had stage IV b UPSC, and I'm currently NED three years after surgery, so I'm doing well.  I did fine without the "expert."

Try not to worry too much. It may be something less serious than cancer.  I hope for your sake that it is.

pinky, thanks for the reminder

Your absolutely right, not all pain spells out cancer!!!  I sure hope it is not, not, not.  Such a dreaded disease, i watched as my dad went from an active, happy man to a pancreatic cancer diagnosis, that took him in less than a year, just horrible.  I do worry though because of how this all started for me and nothing was done the correct way.  Besides the obvious discomforts, something has changed with me, i was walking pretty darn close to 4-5 miles per day, and now most days, i have so much fatigue, i can barely muster up 1-2 miles.  I am so ticked right now, i got a call from gyn/onc office that my doctor left yesterday, kind of a last minute thing, his baby, youngest of five, going to college down south, decided both mom and dad were going, while i totally agree that he should go, my appt has now been moved from this monday the 19th to wednesday the 28th.  Whats another week and half, ugh!!!  I hope your doing really well and your right it is not always about the "best".

meggg

HellieC said:

Stay strong

I'm so sorry you've been experiencing such discomfort.  As the other ladies said, it can be any number of things, from scar tissue to sciatica - not necessarily a return of the cancer.

However, any woman who has had a pelvic cancer and reports pain or discomfort should have it thoroughly checked.  So please stand firm and ask for it to be investigated further, by whatever scan  is deemed appropriate. 

Kindest wishes
Helen

Helen, thanks for your kind thoughts!!

I agree, i need to keep reminding myself, "not always cancer"!!!  I hope to get answers soon, unfortunately, i have a bit longer to wait, as i just received a call saying that the doctor has went out of town, a last minute thing, so now my appt this monday has been moved to wednesday the 28th.  I hope your feeling well and today is a wonderful day for you, thanks again Helen.

Sara Zipora

meggg said:

Sara, thank you!!

Sara, thank you!!

First let me say, i pray for your return to good health and hope today is a good day for you!!!

Sara, you have put my mind at ease and now i feel more confident in my quest to get that pet scan and be heard.  Just as you have experienced, i have heard where blood tests/markers and imaging have been negative, inconclusive or showed nothing, all the while, it is growing.  I will let you know how i make out from my appt on monday (8/19). Oh and your right, we will be recording!!!

Good Luck on Monday

Have good news to share. Had Cataract surgery last week on only seeing eye, success!

We had a great-grandchild on Thursday and our son is getting married tomorrow.

Thank God and all the supportive docs and family and this group of warriorettes, that I'm here to see these happy occasions!

 

Sara

meggg

Sara Zipora said:

Good Luck on Monday

Have good news to share. Had Cataract surgery last week on only seeing eye, success!

We had a great-grandchild on Thursday and our son is getting married tomorrow.

Thank God and all the supportive docs and family and this group of warriorettes, that I'm here to see these happy occasions!

 

Sara

Sara, congratulations, so awesome!!

God bless you Sara, enjoy all of life's blessings, enjoy your children, grandchildren and your great grandbaby, sweetie you deserve it and oh yeah, good eye sight too!!  (by the way) my appt for monday, now has been moved to 8/28, sigh, ugh, sigh, just keeping calm, i guess!!  prayers, love and best wishes sara.....

 

 

 

Ro10

Sara Zipora said:

Good Luck on Monday

Have good news to share. Had Cataract surgery last week on only seeing eye, success!

We had a great-grandchild on Thursday and our son is getting married tomorrow.

Thank God and all the supportive docs and family and this group of warriorettes, that I'm here to see these happy occasions!

 

Sara

Sara , so happy for you

Glad your cataract surgery was a success and you can see better.  I hope You are able to attend your son's wedding.  Congratulations on your great grandson, too.  Many events to celebrate.  I too am glad you are able to enjoy them.  In peace and caring.