papillary serous carcinoma of cervix

Honordon

am not sure how to post so am just going for it am 47 years old and was Diagnoised on 1st April. I have papillary serous carcinoma in my cervix/womb 8.5 cm ( hopefully shrinking ) my two lymphnodes in my pelvis and my kidney stem right side . I was rushed into hospital when I hemoraged during my papsmear test. I have had radiotherapy everyday for last 4weeks and also chemo called cystiplan once a week for these weeks. 5 treatments of chemo and radiotherapy has been everyday except on weekends.

Am told it may be in my lung and this is realy why I posted when I was first admited to hospital I had a few infections in my body I beleive that I had the left over of a bad flu/puemonia from last year my first scanns showed that the cancer was maybe a shadow in my lung ( or a left over infection) ct and mri then after six days in hospital and getting my anemia treatment fixed with blood transfusions I was sent home and come back for a PET scann about three weeks after . This PET scann showed not in my lung. But now my treatment seems to be hanging on a CT scann for next wednesday and if it is in my lung they say I will not be given the internal Brachy to be given in hospital intensely for 2 days straight and my treatment will stop at what they have allready done.

Am realy scared I so wish it not to be in my lung . Also they told me that they do not remove this type of tumor though I read that alot of you have had Hysterectemy's I have not been given that option at all and I wonder why.

waiting for some answers I feel totally lost and just sick about the scann next week I so wish it to be clear and that my lungs are clear

thankyou for listening Donna:)

Honordon

Desperate for someone who is gone through this also
would appreciate all the help I can get in learning more about this cancer
never been so scared in my life am so not going to die from this. I just can;t think about that at all I just want to kick its butt BIG TIME
Am a stubborn Aussie

regards Donna

beckyracn

Honordon,
Your feelings are
Honordon,
Your feelings are natural with all thats going on. I'm sure your head was already spinning with the initial diagnosis and now you have been thrown for a loop again.
Do you have a good support team around you? Outside of this, a fighting stature (which it sounds like you have) is the most important part of this journey...along with great docs.
Your initial tumor was too large to remove surgically prior to radiation and chemo. Some docs do choose to perform a radical hysterectomy after treatments are complete(once the tumor has shrunk), but many choose not to as the damage from the radiaton treatments can be severe and the surgery difficult. And with the spread into the pelvis and kidney area...well, surgery can't do much for these. I sure hope your scan of your lungs turns up negative.
Have they staged your cancer?
Your journey sounds much like mine, but I received 10 chemo, 33 external rads, and 5 internal rads. I was declared in remission 12/08 and still hanging around to talk about it. It's a long and difficult journey for sure, apprehesion lingers wondering when/if it will return, after effects of treatments always a reminder...
Hang in there! Keep posting...it's a great way to express your feelings to those that have been on this crazy rollercoaster ride.
((HUGS))

Honordon

beckyracn said:

Honordon,
Your feelings are
Honordon,
Your feelings are natural with all thats going on. I'm sure your head was already spinning with the initial diagnosis and now you have been thrown for a loop again.
Do you have a good support team around you? Outside of this, a fighting stature (which it sounds like you have) is the most important part of this journey...along with great docs.
Your initial tumor was too large to remove surgically prior to radiation and chemo. Some docs do choose to perform a radical hysterectomy after treatments are complete(once the tumor has shrunk), but many choose not to as the damage from the radiaton treatments can be severe and the surgery difficult. And with the spread into the pelvis and kidney area...well, surgery can't do much for these. I sure hope your scan of your lungs turns up negative.
Have they staged your cancer?
Your journey sounds much like mine, but I received 10 chemo, 33 external rads, and 5 internal rads. I was declared in remission 12/08 and still hanging around to talk about it. It's a long and difficult journey for sure, apprehesion lingers wondering when/if it will return, after effects of treatments always a reminder...
Hang in there! Keep posting...it's a great way to express your feelings to those that have been on this crazy rollercoaster ride.
((HUGS))

You are my Hero today !!
wow 2008 am in awe I am so going to get myself into remisiion also. The Doc say I have a good postive attitude the gastro is realy getting to me have had it all weekend but I just keep thinking this be last week of this radiotheraphy. You know I feel like I don;t wish to know what stage I am - maybe this is denial - I just don;t know if I wish to know and I have not asked. But I am not silly I realise if its in my lungs its about stage 3 ish up somewhere . The Kident stem was only small I beelive less than 1 cm the two on nodes being around 2.5 cm and the larger one in womb/cervix was a long leasion about 8.5 cm ,the Radiologist Specialise showed me the PET scann. Showed that the lungs were clear and lets hope that this new CT scann shows clear lungs as well.

Does make sense that I need to have the tumor shrunk before it is removed . Am allways told one step at a time my mind is allways jumping forward to what next so desperate to get on with things am allways in fast forward thats sure got to change.

Did you change your diet and lifestyle much I am looking at Gawler Foundation here in Australia as a means of changeing my life for the better of my health. Meditation and Diet.

thankyou so much for replying to my post .......warm hugs from Australia .. Donna

beckyracn

Honordon said:

You are my Hero today !!
wow 2008 am in awe I am so going to get myself into remisiion also. The Doc say I have a good postive attitude the gastro is realy getting to me have had it all weekend but I just keep thinking this be last week of this radiotheraphy. You know I feel like I don;t wish to know what stage I am - maybe this is denial - I just don;t know if I wish to know and I have not asked. But I am not silly I realise if its in my lungs its about stage 3 ish up somewhere . The Kident stem was only small I beelive less than 1 cm the two on nodes being around 2.5 cm and the larger one in womb/cervix was a long leasion about 8.5 cm ,the Radiologist Specialise showed me the PET scann. Showed that the lungs were clear and lets hope that this new CT scann shows clear lungs as well.

Does make sense that I need to have the tumor shrunk before it is removed . Am allways told one step at a time my mind is allways jumping forward to what next so desperate to get on with things am allways in fast forward thats sure got to change.

Did you change your diet and lifestyle much I am looking at Gawler Foundation here in Australia as a means of changeing my life for the better of my health. Meditation and Diet.

thankyou so much for replying to my post .......warm hugs from Australia .. Donna

Donna,
Good to hear back
Donna,
Good to hear back from you...you have the fighting spirit, which will get you a long way. This is a crappy disease, more like the rollercoaster ride from hell which you cannot get off when you want, and here in the states they are starting to put it into the category of 'chronic diseases' as it's becoming an epidemic and with today's treatment plans, people are living longer after diagnosis.
I'm sorry to hear that your experiencing gasto problems...they can be nasty! They do get better, most of them, with time. Hang in there!
I wasn't worried about the stage of my cancer at first. They told me a IIB at first, then when I sat down with my radiology oncologist part way through treatments, he told me I was a stage IVA. Down the line, after treatments were done, he says "Let's change you to a IIIB, it sounds better." None of it really matters, I fought it and am here to talk about it...that was my goal.
I am not one of those that went about making drastic changes to my lifestyle due to this disease. But do to the after effects of treatments, my diet/lifestyle has been somewhat limited. As time goes on, it gets better. I have always eaten fairly healthy and still do, but I try to stick to more organic foods when possible. I'm not a fastfood person and never was. I love my fruits and veggies. I exercise, but not a 'go to the gym' type person. I have a recumbant bike that I ride daily as I cannot ride a normal bike due to the bending over to reach the handle bars. Due to the scar tissue/adhesions from radiation, I have a lot of left over GI problems. If I bend over too much, my GI tract shuts down. I received a lot of radiation to my abdomen as well as my pelvis as the cancer had spread to the lymph system in my abdomen too. I spent the first 1.5 years after treatments ended on pretty much a liquid diet. Docs couldn't figure out the problem, so I had to figure it out myself. I am an RN, so I knew a few of the tricks to make things right before they got out of hand. The chemo severly damaged my inner ears, so the tinnitis and vertigo really sent me for a loop. I worked diligently on the WII daily to get back my balance. Slowly but surely, thats improved...but I still don't hop on any rollercoaster rides and avoid heights.
I also did a lot of yoga after the treatments to regain some of my strength; they were really tough on me. I haven't stuck to it as I went back to working 10 hour days two weeks after my last treatment. It was excrusiating, but I did not want to lose everything I worked so hard for. To this day, my WBC has not reached the normal range, so I'm constantly washing my hands. My daughter calls me a "germ afobic". I work with juvenille deliquents, so I need to be diligent.
Mentally, things have changed for the better. I don't sweat the small stuff. Life is too short to focus on the negative. I've become a volunteer for the ACS Road to Recovery program; I transport cancer patients to radiation/chemo/doc appts. that don't have transportation. I love working in my flower gardens and keeping the bird feeders full so I can just sit and watch. I have several hummingbird feeders set up so I can watch them a foot away...they are awesome! These are things I've always done, but now they have much more meaning to me.
Keep up the good work and keep your chin up! You will beat this! And I'll keep my fingers crossed that your scan this week comes back NEGATIVE!!
((HUGS))

Honordon

beckyracn said:

Donna,
Good to hear back
Donna,
Good to hear back from you...you have the fighting spirit, which will get you a long way. This is a crappy disease, more like the rollercoaster ride from hell which you cannot get off when you want, and here in the states they are starting to put it into the category of 'chronic diseases' as it's becoming an epidemic and with today's treatment plans, people are living longer after diagnosis.
I'm sorry to hear that your experiencing gasto problems...they can be nasty! They do get better, most of them, with time. Hang in there!
I wasn't worried about the stage of my cancer at first. They told me a IIB at first, then when I sat down with my radiology oncologist part way through treatments, he told me I was a stage IVA. Down the line, after treatments were done, he says "Let's change you to a IIIB, it sounds better." None of it really matters, I fought it and am here to talk about it...that was my goal.
I am not one of those that went about making drastic changes to my lifestyle due to this disease. But do to the after effects of treatments, my diet/lifestyle has been somewhat limited. As time goes on, it gets better. I have always eaten fairly healthy and still do, but I try to stick to more organic foods when possible. I'm not a fastfood person and never was. I love my fruits and veggies. I exercise, but not a 'go to the gym' type person. I have a recumbant bike that I ride daily as I cannot ride a normal bike due to the bending over to reach the handle bars. Due to the scar tissue/adhesions from radiation, I have a lot of left over GI problems. If I bend over too much, my GI tract shuts down. I received a lot of radiation to my abdomen as well as my pelvis as the cancer had spread to the lymph system in my abdomen too. I spent the first 1.5 years after treatments ended on pretty much a liquid diet. Docs couldn't figure out the problem, so I had to figure it out myself. I am an RN, so I knew a few of the tricks to make things right before they got out of hand. The chemo severly damaged my inner ears, so the tinnitis and vertigo really sent me for a loop. I worked diligently on the WII daily to get back my balance. Slowly but surely, thats improved...but I still don't hop on any rollercoaster rides and avoid heights.
I also did a lot of yoga after the treatments to regain some of my strength; they were really tough on me. I haven't stuck to it as I went back to working 10 hour days two weeks after my last treatment. It was excrusiating, but I did not want to lose everything I worked so hard for. To this day, my WBC has not reached the normal range, so I'm constantly washing my hands. My daughter calls me a "germ afobic". I work with juvenille deliquents, so I need to be diligent.
Mentally, things have changed for the better. I don't sweat the small stuff. Life is too short to focus on the negative. I've become a volunteer for the ACS Road to Recovery program; I transport cancer patients to radiation/chemo/doc appts. that don't have transportation. I love working in my flower gardens and keeping the bird feeders full so I can just sit and watch. I have several hummingbird feeders set up so I can watch them a foot away...they are awesome! These are things I've always done, but now they have much more meaning to me.
Keep up the good work and keep your chin up! You will beat this! And I'll keep my fingers crossed that your scan this week comes back NEGATIVE!!
((HUGS))

Had very positive News

- first significant reduction in all tumours

- second shadow in lungs is still just a shadow and has not turned to tumour

So plan now is for me to have internal brachy on 20th of june so I get to go home for 7 days am realy happy about that and then travel back for the brachy on the monday stay in hospital 3 days and home for a while he said another scann in three months to check lung. This is fine I am so postive its not cancer in there.He did say he can;t cure me of this cancer but will give me time ... well I dunno I think I can give me ALOT of time if they keep shrinking and I still have two radiotheraphy;s left for this round so they will shrink more and the brachy will focis on main tumour .
Am realy happy I feel like I am winning this fight , I know I can beat this maybe I am just palin stubborn HAHAHA ((((((hugs )))) your support has been wondeful I am going to keep you posted Love Donna xoxox

beckyracn

Honordon said:

Had very positive News

- first significant reduction in all tumours

- second shadow in lungs is still just a shadow and has not turned to tumour

So plan now is for me to have internal brachy on 20th of june so I get to go home for 7 days am realy happy about that and then travel back for the brachy on the monday stay in hospital 3 days and home for a while he said another scann in three months to check lung. This is fine I am so postive its not cancer in there.He did say he can;t cure me of this cancer but will give me time ... well I dunno I think I can give me ALOT of time if they keep shrinking and I still have two radiotheraphy;s left for this round so they will shrink more and the brachy will focis on main tumour .
Am realy happy I feel like I am winning this fight , I know I can beat this maybe I am just palin stubborn HAHAHA ((((((hugs )))) your support has been wondeful I am going to keep you posted Love Donna xoxox

HOORAY for you Donna! That's
HOORAY for you Donna! That's GREAT news!! Hang in there and keep fighting...you can do this! Keep me posted. (((HUGS)))

Honordon

beckyracn said:

HOORAY for you Donna! That's
HOORAY for you Donna! That's GREAT news!! Hang in there and keep fighting...you can do this! Keep me posted. (((HUGS)))

well am still fighting the good fight
OK June saw me with chemo and radio which seemed to work well . I also had brachy therapy hence I have one zapped uterus and no cancer in it as is the cervix but seems my ovaries come to party and one of them had a massive tumor which was removed last week . I am home now an in recovery had both tubes and ovaries removed.
They tell me I am stage 4B ,,,,sorry I don;t buy it . If cancer is removed am pretty clean atm and well the main site is not active and its not traveled into anywhere else I am pretty happy about that also they say now that it may of started in my ovaries ,,,,which in essence may not be purely papillary serious but another type of cancer or presenting itself as ....

So full hysterectomy turned into only having tubes and ovaries removed . Am ok with that am hopeful my cervix and uterus will stay clean ..

well that how its all going atm some talk of more chemo after my six weeks recovery ..merry Christmas from Donna xoxo

longtermsurvivor

Honordon said:

well am still fighting the good fight
OK June saw me with chemo and radio which seemed to work well . I also had brachy therapy hence I have one zapped uterus and no cancer in it as is the cervix but seems my ovaries come to party and one of them had a massive tumor which was removed last week . I am home now an in recovery had both tubes and ovaries removed.
They tell me I am stage 4B ,,,,sorry I don;t buy it . If cancer is removed am pretty clean atm and well the main site is not active and its not traveled into anywhere else I am pretty happy about that also they say now that it may of started in my ovaries ,,,,which in essence may not be purely papillary serious but another type of cancer or presenting itself as ....

So full hysterectomy turned into only having tubes and ovaries removed . Am ok with that am hopeful my cervix and uterus will stay clean ..

well that how its all going atm some talk of more chemo after my six weeks recovery ..merry Christmas from Donna xoxo

You are right
that the staging is not really important in the long run. You really are only staged once, under the strict FIGO rules, and that is when you are first seen. The staging doesn't change later on. But that proves not to be important, because each situation proves to be pretty unique.

Was this ovary malignant? And if so was it the same tissue type as your original uterine cancer? This will make quite a difference in what you will be talking to them about in six weeks.

It sounds like you've done well so far. Sorry for this setback, but you certainly have the right attitude.

Best wishes to you.

Honordon

longtermsurvivor said:

You are right
that the staging is not really important in the long run. You really are only staged once, under the strict FIGO rules, and that is when you are first seen. The staging doesn't change later on. But that proves not to be important, because each situation proves to be pretty unique.

Was this ovary malignant? And if so was it the same tissue type as your original uterine cancer? This will make quite a difference in what you will be talking to them about in six weeks.

It sounds like you've done well so far. Sorry for this setback, but you certainly have the right attitude.

Best wishes to you.

yes I believe that it is
yes I believe that it is malignant but not exactly the same as the other cancer was .Is that a good or bad thing I don;t know , yes hopefully a new plan now when I see them in 6 weeks . Am so glad you say that about staging that's exactly how I feel ........best wished also

mamadawg

beckyracn said:

Honordon,
Your feelings are
Honordon,
Your feelings are natural with all thats going on. I'm sure your head was already spinning with the initial diagnosis and now you have been thrown for a loop again.
Do you have a good support team around you? Outside of this, a fighting stature (which it sounds like you have) is the most important part of this journey...along with great docs.
Your initial tumor was too large to remove surgically prior to radiation and chemo. Some docs do choose to perform a radical hysterectomy after treatments are complete(once the tumor has shrunk), but many choose not to as the damage from the radiaton treatments can be severe and the surgery difficult. And with the spread into the pelvis and kidney area...well, surgery can't do much for these. I sure hope your scan of your lungs turns up negative.
Have they staged your cancer?
Your journey sounds much like mine, but I received 10 chemo, 33 external rads, and 5 internal rads. I was declared in remission 12/08 and still hanging around to talk about it. It's a long and difficult journey for sure, apprehesion lingers wondering when/if it will return, after effects of treatments always a reminder...
Hang in there! Keep posting...it's a great way to express your feelings to those that have been on this crazy rollercoaster ride.
((HUGS))

glad to say ur statement is false
Please don't take this personally, but I am glad to say that ur statement about spread into pelvis and kidneys and surgery being unhelpful is false. I was not diagnosed until late in the game also. Actually had normal pa just 2 most before a stage 4 diagnosis. Actually diagnosed because tumor had grown so lrg it cut off kidneys and caused blood pressure to rocket to 210/180 and cause seizures and put me in coma twice. (Initial occurrence had no explanation) when they found cancer it was too lrg to remove surgically, so I had 5 weekly treatments of chemo and 28 daily doses of radiation along w/ 7 internal radiation. All this time I had nephrostomy tubes to save kidney function. First follow up pap showed recurrence with vaginal wall growth as well. So last may I had a total pelvic exteneration surgery. They removed all female organs, my bladder, part of rectum(as it had spread there too) and my left vaginal wall. I was left with an Indiana pouch for a bladder which I catheterize, a colostomy which is to be reversed in few months, vaginal reconstruction with muscle from left leg. So right now I may look like bride of Frankenstein, but I am only 39 and was not ready to quit. Plus I have 5 teenagers to be around for. So although it maybe a tougher battle, (I have had 21 surgical procedures since last august) it is not impossible to beat. As I am now cancer free and last Aug. I was given 6 most to a yr if I was lucky.

mamadawg

beckyracn said:

Honordon,
Your feelings are
Honordon,
Your feelings are natural with all thats going on. I'm sure your head was already spinning with the initial diagnosis and now you have been thrown for a loop again.
Do you have a good support team around you? Outside of this, a fighting stature (which it sounds like you have) is the most important part of this journey...along with great docs.
Your initial tumor was too large to remove surgically prior to radiation and chemo. Some docs do choose to perform a radical hysterectomy after treatments are complete(once the tumor has shrunk), but many choose not to as the damage from the radiaton treatments can be severe and the surgery difficult. And with the spread into the pelvis and kidney area...well, surgery can't do much for these. I sure hope your scan of your lungs turns up negative.
Have they staged your cancer?
Your journey sounds much like mine, but I received 10 chemo, 33 external rads, and 5 internal rads. I was declared in remission 12/08 and still hanging around to talk about it. It's a long and difficult journey for sure, apprehesion lingers wondering when/if it will return, after effects of treatments always a reminder...
Hang in there! Keep posting...it's a great way to express your feelings to those that have been on this crazy rollercoaster ride.
((HUGS))

glad to say ur statement is false
Please don't take this personally, but I am glad to say that ur statement about spread into pelvis and kidneys and surgery being unhelpful is false. I was not diagnosed until late in the game also. Actually had normal pa just 2 most before a stage 4 diagnosis. Actually diagnosed because tumor had grown so lrg it cut off kidneys and caused blood pressure to rocket to 210/180 and cause seizures and put me in coma twice. (Initial occurrence had no explanation) when they found cancer it was too lrg to remove surgically, so I had 5 weekly treatments of chemo and 28 daily doses of radiation along w/ 7 internal radiation. All this time I had nephrostomy tubes to save kidney function. First follow up pap showed recurrence with vaginal wall growth as well. So last may I had a total pelvic exteneration surgery. They removed all female organs, my bladder, part of rectum(as it had spread there too) and my left vaginal wall. I was left with an Indiana pouch for a bladder which I catheterize, a colostomy which is to be reversed in few months, vaginal reconstruction with muscle from left leg. So right now I may look like bride of Frankenstein, but I am only 39 and was not ready to quit. Plus I have 5 teenagers to be around for. So although it maybe a tougher battle, (I have had 21 surgical procedures since last august) it is not impossible to beat. As I am now cancer free and last Aug. I was given 6 most to a yr if I was lucky.

mamadawg

beckyracn said:

Honordon,
Your feelings are
Honordon,
Your feelings are natural with all thats going on. I'm sure your head was already spinning with the initial diagnosis and now you have been thrown for a loop again.
Do you have a good support team around you? Outside of this, a fighting stature (which it sounds like you have) is the most important part of this journey...along with great docs.
Your initial tumor was too large to remove surgically prior to radiation and chemo. Some docs do choose to perform a radical hysterectomy after treatments are complete(once the tumor has shrunk), but many choose not to as the damage from the radiaton treatments can be severe and the surgery difficult. And with the spread into the pelvis and kidney area...well, surgery can't do much for these. I sure hope your scan of your lungs turns up negative.
Have they staged your cancer?
Your journey sounds much like mine, but I received 10 chemo, 33 external rads, and 5 internal rads. I was declared in remission 12/08 and still hanging around to talk about it. It's a long and difficult journey for sure, apprehesion lingers wondering when/if it will return, after effects of treatments always a reminder...
Hang in there! Keep posting...it's a great way to express your feelings to those that have been on this crazy rollercoaster ride.
((HUGS))

glad to say ur statement is false
Please don't take this personally, but I am glad to say that ur statement about spread into pelvis and kidneys and surgery being unhelpful is false. I was not diagnosed until late in the game also. Actually had normal pa just 2 most before a stage 4 diagnosis. Actually diagnosed because tumor had grown so lrg it cut off kidneys and caused blood pressure to rocket to 210/180 and cause seizures and put me in coma twice. (Initial occurrence had no explanation) when they found cancer it was too lrg to remove surgically, so I had 5 weekly treatments of chemo and 28 daily doses of radiation along w/ 7 internal radiation. All this time I had nephrostomy tubes to save kidney function. First follow up pap showed recurrence with vaginal wall growth as well. So last may I had a total pelvic exteneration surgery. They removed all female organs, my bladder, part of rectum(as it had spread there too) and my left vaginal wall. I was left with an Indiana pouch for a bladder which I catheterize, a colostomy which is to be reversed in few months, vaginal reconstruction with muscle from left leg. So right now I may look like bride of Frankenstein, but I am only 39 and was not ready to quit. Plus I have 5 teenagers to be around for. So although it maybe a tougher battle, (I have had 21 surgical procedures since last august) it is not impossible to beat. As I am now cancer free and last Aug. I was given 6 most to a yr if I was lucky.