Diagnosis not easy

24242

Well,
I had written about my best friend in the past and her having to fight over and over the past two years to have spots on her body biopsied for another bout of possible skin cancer. She was not taken seriously until a month ago and found out the spots were indeed skin cancer once again. What are doctors thinking when patients come in with problems and they can't see the forest for the trees. If there is no looking and testing there will never be any early diagnosis for any of us.
My heart breaks now to learn that my best friend is now facing lumps in her breast and arm pit that sound so much like my own, very painful and now she is waiting to hear if she will now have to face breast cancer.
She had a very serious stage of skin cancer the first time around and her risk factors are huge since mother and grandmother both died from breast and bone cancer. I am shocked to learn that wouldn't be enough to keep doctors on her case and do things that should be done to ensure her of her health. It is sad when young women are ignored time after time because doctors think the chances of cancer are very slim. Guess what we get it and cancer can and does hurt.
I am tired of people saying that cancer isn't painful. I have to ask if tumors are growing what are they pressing on that might cause pain? How about nerves, they too cause pain when pressed and obstructed. It is time we change the face of cancer to include everyone, everywhere and stop poo pooing people who come in with spacific concerns.
I was hoping 2007 would start with a bang and it has, be careful what you wish for once again...
I hope this finds you all well and ready for another year!
Tara

LesleyH

Tara - I am so deeply sorry.

I agree about incompetent medical staff. We are never going to cure or even control cancer while we have doctors that STILL don't have a clue! I think that they should face criminal charges and then maybe we would see a change in attitude.

Hugs.

Lesley

Susan956

Tara,

Sorry that your friend is having to deal with this issue. I have been convince that we must be our own best advacate, because Doctors just appear to be too busy.

We will keep her in our thoughts and prayers.

Susan

mssue

Hi Tara,
Well I am starting again...I had about a page written out to post on this subject.After reading back over it though I realized that it was a rant and a ugly one too about my own disgust with the system,physicians and every aspect of the medical field. So in light of my own ramblings I thought I would put aside my own gripes and tell U that I am sad and sorry to hear about your friend,your best friend at that,going through so much to get answers to something that deep down inside she probably already knew.

But please know that heartfelt thoughts and prayers are sent her way and yours too.

Hugs,
Sue

OregonSeaStar

I'm so sorry, Tara, that you are going through this yet again! I can deeply empathize with what you are going through and what your friend is experiencing. For me, it was my 27 year old daughter that no doctors believed and so was misdiagnosed; it caused her years of her life. She complained to doctors for 4 years that she was having pain, eventually severe, in her abdomen and sides, and that she could not sleep on her stomach anymore because of great discomfort. She was told over and over that she 'probably' had recurrent ovarian cysts that would resolve themselves. Guess what! They didn't. When she married at 27 and wanted to make sure everything was okay to start a family, the doctors finally agreed to do a quick look/see and remove any stubborn cysts. When they got in . . SURPRISE! No cysts! Instead they found that both of my daughter's ovaries had ruptured, spewing cancer throughout her body. They said it couldn't be! They said no one this young gets this type of ovarian cancer! Despite her very tough fight - 7 chemo regimes and 3 operations - she died 3 years later at age 30.

Fight hard for yourself. Encourage your friend to fight hard to make sure she is heard and taken seriously! We usually KNOW our bodies so much better than anyone else and we MUST be our own best advocates.

My thoughts and prayers will be with you and your friend.

-shelley

24242

OregonSeaStar said:

I'm so sorry, Tara, that you are going through this yet again! I can deeply empathize with what you are going through and what your friend is experiencing. For me, it was my 27 year old daughter that no doctors believed and so was misdiagnosed; it caused her years of her life. She complained to doctors for 4 years that she was having pain, eventually severe, in her abdomen and sides, and that she could not sleep on her stomach anymore because of great discomfort. She was told over and over that she 'probably' had recurrent ovarian cysts that would resolve themselves. Guess what! They didn't. When she married at 27 and wanted to make sure everything was okay to start a family, the doctors finally agreed to do a quick look/see and remove any stubborn cysts. When they got in . . SURPRISE! No cysts! Instead they found that both of my daughter's ovaries had ruptured, spewing cancer throughout her body. They said it couldn't be! They said no one this young gets this type of ovarian cancer! Despite her very tough fight - 7 chemo regimes and 3 operations - she died 3 years later at age 30.

Fight hard for yourself. Encourage your friend to fight hard to make sure she is heard and taken seriously! We usually KNOW our bodies so much better than anyone else and we MUST be our own best advocates.

My thoughts and prayers will be with you and your friend.

-shelley

Rant Sue if you like,
I too am very sorry Shelley for you having to face what you have. I use this post to rant about my life or it simply sometimes would just drive me crazy with all that wirls around in this head of mine.
I have found letting everything I think and feel have its place and if that is still in my head then I must get it out. Still to this day I am so grateful I am a talker and not afraid to be honest about myself and my life.
It is disheartening when my story is still being played out to this day. You would think somewhere along others would learn and want to know what to do that is right. I still have no confidence in my own medical system and that seems to be the hardest to bear.
Cancer is everywhere and I wonder when it is going to be treated as such. The sooner the better diagnosis takes place and that would be the savings to our governments and health care system. Young women, daughters and sisters still get cancer even though wish it wasn't so. Cancer is Painful sometimes to some people and some of us meet no criteria in place we are simply different.
Listening to our bodies seems to be our own best defense.
thank you
Tara

LesleyH

OregonSeaStar said:

I'm so sorry, Tara, that you are going through this yet again! I can deeply empathize with what you are going through and what your friend is experiencing. For me, it was my 27 year old daughter that no doctors believed and so was misdiagnosed; it caused her years of her life. She complained to doctors for 4 years that she was having pain, eventually severe, in her abdomen and sides, and that she could not sleep on her stomach anymore because of great discomfort. She was told over and over that she 'probably' had recurrent ovarian cysts that would resolve themselves. Guess what! They didn't. When she married at 27 and wanted to make sure everything was okay to start a family, the doctors finally agreed to do a quick look/see and remove any stubborn cysts. When they got in . . SURPRISE! No cysts! Instead they found that both of my daughter's ovaries had ruptured, spewing cancer throughout her body. They said it couldn't be! They said no one this young gets this type of ovarian cancer! Despite her very tough fight - 7 chemo regimes and 3 operations - she died 3 years later at age 30.

Fight hard for yourself. Encourage your friend to fight hard to make sure she is heard and taken seriously! We usually KNOW our bodies so much better than anyone else and we MUST be our own best advocates.

My thoughts and prayers will be with you and your friend.

-shelley

Shelley,

I am so sorry. I am so deeply sorry. Your story is so terribly sad. My story is not quite as bad but I also had my chances of survival cut by an incompetent women's clinic. I went with a lump and the mammogram was negative so they refused to send me for a biopsy. I went back 5 times in the next 10 months saying there is something seriously wrong with me. Finally, skin puckering showed that it was serious. By that time I was stage III.

Hugs.

Lesley

LesleyH

mssue said:

Hi Tara,
Well I am starting again...I had about a page written out to post on this subject.After reading back over it though I realized that it was a rant and a ugly one too about my own disgust with the system,physicians and every aspect of the medical field. So in light of my own ramblings I thought I would put aside my own gripes and tell U that I am sad and sorry to hear about your friend,your best friend at that,going through so much to get answers to something that deep down inside she probably already knew.

But please know that heartfelt thoughts and prayers are sent her way and yours too.

Hugs,
Sue

Please rant. This is the only way our stories will be heard. There are a lot of board certified idiots out there.

Hugs.

Lesley

krkath

Hi Tara,
I am so sorry to hear this news.
My best friend also has several ??? spots on her face and even though no cancer history in her family....with what we have both been through I am also a sceptic as you are.
I was going to ask how your Holidays went since I haven't talked to you in a while. Slightly inappropriate to say the least. I am so sad for you.
Keep pushing the issue and PLEASE let us know how she is doing and what recommendations the Doc's are giving. I also wish she would get on the site, maybe now she'll be able to. I have even shown my friend all your responses, and believe me it HAS helped.
For those who are wondering, Tara and I both have best friends that are VERY reluctant to even talk about anything concerning the "C" word, after watching us suffer through our terrible painful side effects from treatment.
OH, and off the subject just a little. Tara, Thank-You so much for the advice on Neurontin. My doctors ALL agreed and guess what? IT'S WORKING. It has lessened my bone pain considerably.
That's what this site is ALL about. And I Thank All of you for sharing your stories.
In the mean time Tara, my prayers and thoughts go out to you and your very good friend.
HUGS,
Kathy R.

24242

krkath said:

Hi Tara,
I am so sorry to hear this news.
My best friend also has several ??? spots on her face and even though no cancer history in her family....with what we have both been through I am also a sceptic as you are.
I was going to ask how your Holidays went since I haven't talked to you in a while. Slightly inappropriate to say the least. I am so sad for you.
Keep pushing the issue and PLEASE let us know how she is doing and what recommendations the Doc's are giving. I also wish she would get on the site, maybe now she'll be able to. I have even shown my friend all your responses, and believe me it HAS helped.
For those who are wondering, Tara and I both have best friends that are VERY reluctant to even talk about anything concerning the "C" word, after watching us suffer through our terrible painful side effects from treatment.
OH, and off the subject just a little. Tara, Thank-You so much for the advice on Neurontin. My doctors ALL agreed and guess what? IT'S WORKING. It has lessened my bone pain considerably.
That's what this site is ALL about. And I Thank All of you for sharing your stories.
In the mean time Tara, my prayers and thoughts go out to you and your very good friend.
HUGS,
Kathy R.

Thank YOU kathy,
I am so glad that you have found something to improve the quality to your life. I am such a believer in no one should be suffering because that too is so traumatic for the body. That is one reason I share all of me with you all. I have been responding to messages since the 200th and continue to learn so much more myself. I think that is one reason asking questions is so important because we truly can help each other more I think sometimes than medicine itself.
My Christmas quiet since I didn't go back home to the family. It was nice to spend so much time with the son and having him so much more attached to his family is truly a wonderful thing. I am truly blessed to have survived so much and that includes that son of mine, lolololol.
"It is what it is" I have come to terms with it. I know my friend is a fighter like myself and she too will find her voice. I guess I find it so sad that after all this time women still have to fight so hard for the care they need.
Love you all,
Tara

mssue

Oh my God,I can't believe that happened with your daughter Shelley.That ripped my heart out to read,;[ I cannot imagine,it is making me cry now, to think if that were my own daughter. Don't these Doctors take a hipocratice (sp) oath , to do EVERYTHING that is possible to save a LIFE???? Sometimes it just feels like no one really cares.
I know things happen all of the time but it really burns a good one when it is someone U Love.My Husband, due to a Kidney Stone, found out last August after a CT scan that he had kidney cancer,they took his left kidney-I thank God he is still with me.It is scary though - there was no pain,no signs-if they hadn't done that test when they did,I would not have him much longer. It breaks my heart to think of all the suffering everyone goes through with this disease,the medical community and every thing else that jumps on that band wagon...It is definantely not one that plays happy songs.

I take Neurontin too Kathy,my left foot is numb,pain sometimes,my legs goes numb if I stand for a while,my lower back hurts all the time.The Neurontin helps but it doesn't give total releif,I can't seem to find it.They have me taking 3600 mg a day,and no one has yet been able to tell me why-what's wrong...it is so infuriating,I am also taking a anti-inflammatory type drug to help reduce inflamation-everywhere I guess.Some days I can go like nobodies business other days I can barely drag myself out of bed,complete exhaustion.My last treatment was January 2004-wow it's been 3 years this month...
Anyway my Sister,was on her chemo regimen after her 2nd bout of cancer,1st cervical,then ovarian stage 3,her Husband passed,she couldn't work after the hysterectomy and chemo,she ended up losing her ins.,couldn't afford it.Well she had 2 ports in her 1 in her chest 1 in her abdomen,they are still there.The doctor refused to remove them while she had ins.she isn't on chemo anymore and she can't afford to see him and is checking into what trials are available.In the meantime those ports need to be flushed regularly-it is really a terrible situation to be in.I can't understand why they would not remove them - they knew her situation well-the port in her abdomen is larger,she is a very small person probably doesn't weight 100 lbs wet.Part of the reason ,thinking about it, may have been after the surgery and chemo later they felt a lump or knot in her side -well there wasn't suppose to be anything left in there...even after running a slew of test they still couldn't say what it was,maybe a cyst of some sort-would watch it...HAHAHA Right! Now unless she has the money -which she doesn't-she can't even get in to see them.I don't know what to think anymore so much more is swirlin' around in my head sometimes I can't think straight.

Lesley,is there a list of board certified idiots out there?lol - Am I on it???? I must say I like the way U think criminal charges hummmm...might would get 'em straight and keep 'em honest.

Tara I am glad your friend is a fighter inside of herself and one by her side,cause sometimes it takes two to stand strong and get through it all.She's lucky to have U.

I did warn U about my ranting right now but anyway - Thanks for the open door to vent...U guys and this site have truly been a blessing to me over the years.I greatly Appreciate U all,Thanks Again!
Big Hugs &
Love Always,
Sue

24242

mssue said:

Oh my God,I can't believe that happened with your daughter Shelley.That ripped my heart out to read,;[ I cannot imagine,it is making me cry now, to think if that were my own daughter. Don't these Doctors take a hipocratice (sp) oath , to do EVERYTHING that is possible to save a LIFE???? Sometimes it just feels like no one really cares.
I know things happen all of the time but it really burns a good one when it is someone U Love.My Husband, due to a Kidney Stone, found out last August after a CT scan that he had kidney cancer,they took his left kidney-I thank God he is still with me.It is scary though - there was no pain,no signs-if they hadn't done that test when they did,I would not have him much longer. It breaks my heart to think of all the suffering everyone goes through with this disease,the medical community and every thing else that jumps on that band wagon...It is definantely not one that plays happy songs.

I take Neurontin too Kathy,my left foot is numb,pain sometimes,my legs goes numb if I stand for a while,my lower back hurts all the time.The Neurontin helps but it doesn't give total releif,I can't seem to find it.They have me taking 3600 mg a day,and no one has yet been able to tell me why-what's wrong...it is so infuriating,I am also taking a anti-inflammatory type drug to help reduce inflamation-everywhere I guess.Some days I can go like nobodies business other days I can barely drag myself out of bed,complete exhaustion.My last treatment was January 2004-wow it's been 3 years this month...
Anyway my Sister,was on her chemo regimen after her 2nd bout of cancer,1st cervical,then ovarian stage 3,her Husband passed,she couldn't work after the hysterectomy and chemo,she ended up losing her ins.,couldn't afford it.Well she had 2 ports in her 1 in her chest 1 in her abdomen,they are still there.The doctor refused to remove them while she had ins.she isn't on chemo anymore and she can't afford to see him and is checking into what trials are available.In the meantime those ports need to be flushed regularly-it is really a terrible situation to be in.I can't understand why they would not remove them - they knew her situation well-the port in her abdomen is larger,she is a very small person probably doesn't weight 100 lbs wet.Part of the reason ,thinking about it, may have been after the surgery and chemo later they felt a lump or knot in her side -well there wasn't suppose to be anything left in there...even after running a slew of test they still couldn't say what it was,maybe a cyst of some sort-would watch it...HAHAHA Right! Now unless she has the money -which she doesn't-she can't even get in to see them.I don't know what to think anymore so much more is swirlin' around in my head sometimes I can't think straight.

Lesley,is there a list of board certified idiots out there?lol - Am I on it???? I must say I like the way U think criminal charges hummmm...might would get 'em straight and keep 'em honest.

Tara I am glad your friend is a fighter inside of herself and one by her side,cause sometimes it takes two to stand strong and get through it all.She's lucky to have U.

I did warn U about my ranting right now but anyway - Thanks for the open door to vent...U guys and this site have truly been a blessing to me over the years.I greatly Appreciate U all,Thanks Again!
Big Hugs &
Love Always,
Sue

I am sorry Sue,
It is very frustrating to know that there is help if one can just get at it. It is becoming more frustrating in my country Canada because we once had the health care system envied by the world but now it is becoming a system more available to those with money. We have hospitals opening all the time that cost twice as much as public system so only the rich have access to it and will get care in a timely fashion. I find this amazing since I had been a middle income earner for 30 years and feel like I have paid for everyone including the rich since they seem to have the loop holes for avoiding to pay appropriate taxes. It is a sad day when the rich now are the ones getting excellent care because they can pay out of pocket for it.
How is it in my country we can have a province with a 28% better success rate than anywhere else. I told my best friend she should be fighting for BC Health Care since her province has dropped the ball. She is intitled to the same care I received and she should be fighting for it.
As it turns out there is enough money in each of our countries to take care of their people but our society is now choosing not to.
Tara

krkath

mssue said:

Oh my God,I can't believe that happened with your daughter Shelley.That ripped my heart out to read,;[ I cannot imagine,it is making me cry now, to think if that were my own daughter. Don't these Doctors take a hipocratice (sp) oath , to do EVERYTHING that is possible to save a LIFE???? Sometimes it just feels like no one really cares.
I know things happen all of the time but it really burns a good one when it is someone U Love.My Husband, due to a Kidney Stone, found out last August after a CT scan that he had kidney cancer,they took his left kidney-I thank God he is still with me.It is scary though - there was no pain,no signs-if they hadn't done that test when they did,I would not have him much longer. It breaks my heart to think of all the suffering everyone goes through with this disease,the medical community and every thing else that jumps on that band wagon...It is definantely not one that plays happy songs.

I take Neurontin too Kathy,my left foot is numb,pain sometimes,my legs goes numb if I stand for a while,my lower back hurts all the time.The Neurontin helps but it doesn't give total releif,I can't seem to find it.They have me taking 3600 mg a day,and no one has yet been able to tell me why-what's wrong...it is so infuriating,I am also taking a anti-inflammatory type drug to help reduce inflamation-everywhere I guess.Some days I can go like nobodies business other days I can barely drag myself out of bed,complete exhaustion.My last treatment was January 2004-wow it's been 3 years this month...
Anyway my Sister,was on her chemo regimen after her 2nd bout of cancer,1st cervical,then ovarian stage 3,her Husband passed,she couldn't work after the hysterectomy and chemo,she ended up losing her ins.,couldn't afford it.Well she had 2 ports in her 1 in her chest 1 in her abdomen,they are still there.The doctor refused to remove them while she had ins.she isn't on chemo anymore and she can't afford to see him and is checking into what trials are available.In the meantime those ports need to be flushed regularly-it is really a terrible situation to be in.I can't understand why they would not remove them - they knew her situation well-the port in her abdomen is larger,she is a very small person probably doesn't weight 100 lbs wet.Part of the reason ,thinking about it, may have been after the surgery and chemo later they felt a lump or knot in her side -well there wasn't suppose to be anything left in there...even after running a slew of test they still couldn't say what it was,maybe a cyst of some sort-would watch it...HAHAHA Right! Now unless she has the money -which she doesn't-she can't even get in to see them.I don't know what to think anymore so much more is swirlin' around in my head sometimes I can't think straight.

Lesley,is there a list of board certified idiots out there?lol - Am I on it???? I must say I like the way U think criminal charges hummmm...might would get 'em straight and keep 'em honest.

Tara I am glad your friend is a fighter inside of herself and one by her side,cause sometimes it takes two to stand strong and get through it all.She's lucky to have U.

I did warn U about my ranting right now but anyway - Thanks for the open door to vent...U guys and this site have truly been a blessing to me over the years.I greatly Appreciate U all,Thanks Again!
Big Hugs &
Love Always,
Sue

Hi Sue, See? We really do get good information here. And ya, Rant all you want!
I'm 2 years out and still in a lot of bone pain. If not for Tara telling me about the Neurontin, I'da never known. I'm just starting to get to 4-300mg a day. But I also still have to take Percoset. Like you some days I feel like I don't need to take my pain meds and then others the pain just kicks my butt.
I feel for people like Tara who's been in pain and dealing with it for 10 years! I can't believe that! How awful and God I would be so depressed.
But, things DO get better even if only for a day, a moment, a thought, we can cherish anything however small that happens to be a good thing.
OK I'm rambling.
Kathy R.

kathydaly

I don't know if it makes any sense to reply when every one else has really said it all. Thank God your girlfriend has you, as was true for me, a girlfriend saved my life too!

Tara, I absolutely remember you writing about your best friend before and this whole dilemma, and it seems that we all now know that perserverance and advocating for ourselves is what counts.

None of us knew this at the beginning, nor do any of the new cancer victims know it. And when I have talked to some of these potential new cancer patients, they don't want to hear about putting a gun to their doctor's head to get a definitive answer, because they want to believe what the doctor's tell them, and who wouldn't? It's a cycle that seems to go on and on.
I also was NOT diagnosed for 3 yrs. due to age, and if its painful it can't be BC., etc.
I believed him, I wanted to believed him.
That was a fantasy my girlfriend snapped me out of, Thank God.
And so I learned the lesson, believe no one, until you have the proof!
(jeez, I'm ranting too)

The real problem started with the insurance companies. THEY are unquestionably CRIMINALS, and or the GOVT. Insurance. Once the ins. co.'s got there foothold in with the greedy doc.'s, the whole system became their's and even good doc.'s were forced to be part of this whole ins. run health system, which then put the Hippocratic Oath in the crapper.

We are the ones who must spread the word, that it is all about the ins. co.'s forcing every doctor and hospital to cut corners where ever they can and meet the quota for them.

I had one of the top breast surgeons in the country(USA), and world renowned not believing that I could tell where the 2nd BC was due to pain, Dr. Jeanne Petrick at MSKCC. She is dead now, unbelievably hit by an ambulette and crushed to death, the driver, a woman, who was blinded by the sun. It is stunning to me that when it was where I said it was,(because of the pain and the MRI report for her had been written up wrong) her response was, well, we just would have caught it when it got bigger!

I also take neurontin, 1800 mgs a day, absolutely helps. I also take oxycontin(sp) for the pain and antidepressant's.

I am also enraged at what many of us have to go through to be heard. I feel so much empathy for you and your girl friend.

Prayers and hugggs, Kathy