If you do not feel right about something, read this

Cindy Bear

I'll second that
Ladies:
I'll second what Meena says. My mother passed away from uterine cancer last year. She had been complaining of hip pain, back pain, side pain for a long time. Her GP basically patted her on the head and told her it was arthritis. He never even sent her for an xray. My mother, who had no problem being assertive with the chemlawn guy or the cashier that overcharged her, was extremely passive around any medical professionals. Drs, nurses you name it. She saw the white coats, she went mute. She trusted him and he patronized her. By the time she started spotting, we believe her cancer was already very advanced. He told her she had a kidney infection and put her on an antibiotic. No tests. My sister questioned him, "oh we tested her urine , it's a kidney infection" The bleeding stopped, 5 mos. later it started again. This time another antiobiotic and finally tests. You know your body better than anybody, you know when something isn't right. We tend to be our own worst enemies.. if you're older like my mom, age can work against you because older people seem to think pain and aches are normal and they need to tough it out. Get a second, even third opinion. If her GP had taken the time to examine her , really examined her, I think he would have felt something. That's the problem, all the fancy scans and blood work and prescription drugs but doctors are so overbooked and understaffed, they aren't physically touching their patients anymore...

meena1

Cindy Bear said:

I'll second that
Ladies:
I'll second what Meena says. My mother passed away from uterine cancer last year. She had been complaining of hip pain, back pain, side pain for a long time. Her GP basically patted her on the head and told her it was arthritis. He never even sent her for an xray. My mother, who had no problem being assertive with the chemlawn guy or the cashier that overcharged her, was extremely passive around any medical professionals. Drs, nurses you name it. She saw the white coats, she went mute. She trusted him and he patronized her. By the time she started spotting, we believe her cancer was already very advanced. He told her she had a kidney infection and put her on an antibiotic. No tests. My sister questioned him, "oh we tested her urine , it's a kidney infection" The bleeding stopped, 5 mos. later it started again. This time another antiobiotic and finally tests. You know your body better than anybody, you know when something isn't right. We tend to be our own worst enemies.. if you're older like my mom, age can work against you because older people seem to think pain and aches are normal and they need to tough it out. Get a second, even third opinion. If her GP had taken the time to examine her , really examined her, I think he would have felt something. That's the problem, all the fancy scans and blood work and prescription drugs but doctors are so overbooked and understaffed, they aren't physically touching their patients anymore...

Cindy, I am so sorry to hear
Cindy, I am so sorry to hear this about your mom. This story is so sad, but it seems to have happened to quite a few people. and sometimes you just hate to keep complaining and whining

sea60

meena1 said:

Cindy, I am so sorry to hear
Cindy, I am so sorry to hear this about your mom. This story is so sad, but it seems to have happened to quite a few people. and sometimes you just hate to keep complaining and whining

Meena, you're in my thoughts and prayers
It is so mind boggling to have so many side effects and you just don't know which is stemming from what? I would venture to say, I would be calling my doctor at least once a week.

I appreciate the awareness you brought to light in sharing your experience. With all my heart I wish NO ONE had to go through this, and certainly not 2 or 3 times!

Please know so many will be praying for you, for strength, for a good report. Please keep us posted. I'm glad the ocean and it's beautiful healing sounds gave you peace.

Sending you a warm embrace,

Sylvia

linpsu

meena1 said:

Cindy, I am so sorry to hear
Cindy, I am so sorry to hear this about your mom. This story is so sad, but it seems to have happened to quite a few people. and sometimes you just hate to keep complaining and whining

thanks
Thanks so much for sharing your story. I'm sure it has inspired everyone who read it to be their own advocates in this fight. We know our bodies better than a doctor does. Hope you had a great time at the shore.

Cindy Bear

Thanks Meena
Thank you Meena. Yes what happened to my mother is sad and it still angers and depresses me. Trying to help and educate others, in a small way, makes me feel that something good can come from this loss.

cahjah75

I don't know what to say.
Meena, you've put into words our fears of possible recurrence. I know first hand that cancer can show up in other places because I watched my sister-in-law battle 3 separate bouts w/c. Thank goodness you were diligent in pestering your dr. When my oncologist told me that I had a 20% risk of recurrence and he was recommending chemo I told him I would do whatever it takes. I'm a bit worried because blood work for my rheumatologist showed an elevated liver function. My oncologist didn't seem concerned but I did read that chemo can affect the liver. I just had the test repeated. The first test was taken 2 weeks post bilateral mastectomy. I'm having a needle biopsy of my thyroid next week. We know what our bodies are telling us and hopefully our doctors believe what we're saying. {{Hugs}} to you as you go through the battle again.
Char

Kat11

cahjah75 said:

I don't know what to say.
Meena, you've put into words our fears of possible recurrence. I know first hand that cancer can show up in other places because I watched my sister-in-law battle 3 separate bouts w/c. Thank goodness you were diligent in pestering your dr. When my oncologist told me that I had a 20% risk of recurrence and he was recommending chemo I told him I would do whatever it takes. I'm a bit worried because blood work for my rheumatologist showed an elevated liver function. My oncologist didn't seem concerned but I did read that chemo can affect the liver. I just had the test repeated. The first test was taken 2 weeks post bilateral mastectomy. I'm having a needle biopsy of my thyroid next week. We know what our bodies are telling us and hopefully our doctors believe what we're saying. {{Hugs}} to you as you go through the battle again.
Char

The problem is, the doctors
The problem is, the doctors sometimes just don't listen or they think were nuts or in a panic. How do you get through to them.

Megan M

cahjah75 said:

I don't know what to say.
Meena, you've put into words our fears of possible recurrence. I know first hand that cancer can show up in other places because I watched my sister-in-law battle 3 separate bouts w/c. Thank goodness you were diligent in pestering your dr. When my oncologist told me that I had a 20% risk of recurrence and he was recommending chemo I told him I would do whatever it takes. I'm a bit worried because blood work for my rheumatologist showed an elevated liver function. My oncologist didn't seem concerned but I did read that chemo can affect the liver. I just had the test repeated. The first test was taken 2 weeks post bilateral mastectomy. I'm having a needle biopsy of my thyroid next week. We know what our bodies are telling us and hopefully our doctors believe what we're saying. {{Hugs}} to you as you go through the battle again.
Char

Thank you Meena for sharing
Thank you Meena for sharing this! It is something we all need to be aware of.

Still praying for you,

Megan

carkris

Megan M said:

Thank you Meena for sharing
Thank you Meena for sharing this! It is something we all need to be aware of.

Still praying for you,

Megan

do you think the original
do you think the original Pet was wrong? because 4 months for symptomatic cancer after a pet is very quick. I think sometimes our doctors dont want to think it either. My LFTs were elevated during chemo, but they came down.
I agree we have to be our best advocate. But we are only human ans want to believe the best and not have tests everytime you turn around. as Chen says Ostrich.
I also found all my cancer 3 times. I had seen 6 docs and had a mammogram in the time my cancer was diagnosed. they did not palpate my large tumor I DID. they were pretty shocked.
It took me awhile to get over this. I thought I should have asked for an MRI as lobular is not found on Mammo. (I didnt know this) being a nurse I think I am supposed to know better, I was pretty mad at my doc. as I had lobular dysplasia. I am the first one to be pushy for my family and patients. Anyway, I am proud to say I have turned into a pretty pushy broad with no apologies!

DianeBC

meena1 said:

Oh, thank you, Katz. You
Oh, thank you, Katz. You said exactly what i wanted to say. I know that we all have that "fear", and we should not let us consume us, but we need to be aware of our body. And i like the word dilligence.

I am still so sorry and so
I am still so sorry and so sad Meena that you had a recurrence. Praying for you!


And, thank you for this excellent post!


Hugs, Diane

24242

carkris said:

do you think the original
do you think the original Pet was wrong? because 4 months for symptomatic cancer after a pet is very quick. I think sometimes our doctors dont want to think it either. My LFTs were elevated during chemo, but they came down.
I agree we have to be our best advocate. But we are only human ans want to believe the best and not have tests everytime you turn around. as Chen says Ostrich.
I also found all my cancer 3 times. I had seen 6 docs and had a mammogram in the time my cancer was diagnosed. they did not palpate my large tumor I DID. they were pretty shocked.
It took me awhile to get over this. I thought I should have asked for an MRI as lobular is not found on Mammo. (I didnt know this) being a nurse I think I am supposed to know better, I was pretty mad at my doc. as I had lobular dysplasia. I am the first one to be pushy for my family and patients. Anyway, I am proud to say I have turned into a pretty pushy broad with no apologies!

Just to add
Women often get the menopausal thing for the answer to aches and pains as well as the leg that drags. Men can chalk all sorts of things up to that stage of our lives and all it does is keep them from doing the job they set out for themselves.
Pain unfortunately can be apart of survival from this retched disease. Some of us do not fair that well with the treatment phase of cancer and are left with more problems but alive in the end.
I am grateful for every minute every year but fighting for treatment with these other diseases have not been fun. Seems I had to fight 14 years ago to be taken seriously for the PAIN I was suffering with the lump growing rapidly in my arm pit. Imagine 14 years later knowing in your soul that something isn't right and still having to fight long hard once again for testing to make sure it isn't cancer. I have done the fibrous cyst thing and not settling for the fat cyst they want to chalk this new rapidly growing lump in my arm, up to. Thank God for getting second opinions from just seeing a doctor that is filling in for your own and telling me they need to keep an eye on me and my lumps and they need to get to the bottom of the pain issues I am dealing with though everyone else seems to think the lump can't cause such pain. Right, the previous lumps were painful why I found them in the first place. Right cancer doesn't hurt....
Listen to your soul it truly screams to us if we would only take the time to listen. Most of us are moving so fast we often can chalk our own pains up to many things, I sure did but it came to the point one can not deny the agony of defeat.
Thanks for the thread far too many of us suffer in silence and please read my story which is a speech I gave to doctors, nurses, survivors and politicians alike, my Living Well With Cancer story. Many of us can relate.
Tara

susie09

24242 said:

Just to add
Women often get the menopausal thing for the answer to aches and pains as well as the leg that drags. Men can chalk all sorts of things up to that stage of our lives and all it does is keep them from doing the job they set out for themselves.
Pain unfortunately can be apart of survival from this retched disease. Some of us do not fair that well with the treatment phase of cancer and are left with more problems but alive in the end.
I am grateful for every minute every year but fighting for treatment with these other diseases have not been fun. Seems I had to fight 14 years ago to be taken seriously for the PAIN I was suffering with the lump growing rapidly in my arm pit. Imagine 14 years later knowing in your soul that something isn't right and still having to fight long hard once again for testing to make sure it isn't cancer. I have done the fibrous cyst thing and not settling for the fat cyst they want to chalk this new rapidly growing lump in my arm, up to. Thank God for getting second opinions from just seeing a doctor that is filling in for your own and telling me they need to keep an eye on me and my lumps and they need to get to the bottom of the pain issues I am dealing with though everyone else seems to think the lump can't cause such pain. Right, the previous lumps were painful why I found them in the first place. Right cancer doesn't hurt....
Listen to your soul it truly screams to us if we would only take the time to listen. Most of us are moving so fast we often can chalk our own pains up to many things, I sure did but it came to the point one can not deny the agony of defeat.
Thanks for the thread far too many of us suffer in silence and please read my story which is a speech I gave to doctors, nurses, survivors and politicians alike, my Living Well With Cancer story. Many of us can relate.
Tara

Good thread!
Thanks for this thread! And, I add that I am so sorry that you have a recurrence now and I pray that your chemo will continue to work for you! Hang in there!

CypressCynthia

Well said Meena
I am a firm believer that we as individuals often know before anyone else. There may be symptoms that we can't begin to verbalize properly but we just know. We are more familiar with our bodies than anyone.

Here is my experience. In August 1986, while putting on my swimsuit, I felt a weird lump. It was painless, had no borders that I could feel, a thickening. Of course, big red flags!

I put off going to the doc until Feb 1987 because, at 33, I didn't want to sound like a nut. My GYN told me, after examining me, "I'm not impressed."

Fortunately, as I was leaving her office, she stopped me and said that because of my family hx she wanted a "baseline mammogram." The mammogram came back IDC. Turns out that the lump I felt was the tail of the tumor and the origin was behind my nipple. Because it was so large I had to have a mastectomy. Also had 4 nodes.

Fast forward to 2005, in Nov after Katrina I turn up with 3-4 broken ribs from lifting boxes. I had a bone scan, Pet, CT, etc--all were inconclusive and my cancer markers were normal.

I complained and complained about my ribs even telling one doc "it feels like an alien in my chest trying to push out." I had pneumonia 2 X between 2005 & 2009 (never had pneumonia before). I was very tired. The pain was unmanageable. My family doc told me that, after rib fractures, I would just have the pain off and on for the rest of my life. Live with it.

Finally, pneumonia again in Feb 2009 and the CT this time is very suspicious, repeat bone scan comes back "osseous metastasis." Markers are now very abnormal. Bone biopsies of 2 different ribs confirms that, in both ribs samples, it is breast metastasis from 22 ys ago!

Both times, I really felt something was wrong, but you are very right in saying that we are just happy to hear the good news without insisting something is wrong.

Don't live your life waiting for something bad to happen, but do speak up if you know something bad is happening. Be diligent; very good advice.

winsomebulldog

My heart breaks for you,
My heart breaks for you, Meena! I am just starting this journey - just had my lumpectomy on Thursday - but I've already been thinking about the fact that I know I'll be spending the rest of my life wondering if it will come back. No matter how the treatments go or what the prognosis ultimately is down the road, there will just always be that fear in the back of my mind. I praise you for continuing to seek answers and wish that we didn't have to practically demand that our doctors listen to our fears and investigate our concerns. But God bless you, Meena, and I'll be praying for you!

meena1

CypressCynthia said:

Well said Meena
I am a firm believer that we as individuals often know before anyone else. There may be symptoms that we can't begin to verbalize properly but we just know. We are more familiar with our bodies than anyone.

Here is my experience. In August 1986, while putting on my swimsuit, I felt a weird lump. It was painless, had no borders that I could feel, a thickening. Of course, big red flags!

I put off going to the doc until Feb 1987 because, at 33, I didn't want to sound like a nut. My GYN told me, after examining me, "I'm not impressed."

Fortunately, as I was leaving her office, she stopped me and said that because of my family hx she wanted a "baseline mammogram." The mammogram came back IDC. Turns out that the lump I felt was the tail of the tumor and the origin was behind my nipple. Because it was so large I had to have a mastectomy. Also had 4 nodes.

Fast forward to 2005, in Nov after Katrina I turn up with 3-4 broken ribs from lifting boxes. I had a bone scan, Pet, CT, etc--all were inconclusive and my cancer markers were normal.

I complained and complained about my ribs even telling one doc "it feels like an alien in my chest trying to push out." I had pneumonia 2 X between 2005 & 2009 (never had pneumonia before). I was very tired. The pain was unmanageable. My family doc told me that, after rib fractures, I would just have the pain off and on for the rest of my life. Live with it.

Finally, pneumonia again in Feb 2009 and the CT this time is very suspicious, repeat bone scan comes back "osseous metastasis." Markers are now very abnormal. Bone biopsies of 2 different ribs confirms that, in both ribs samples, it is breast metastasis from 22 ys ago!

Both times, I really felt something was wrong, but you are very right in saying that we are just happy to hear the good news without insisting something is wrong.

Don't live your life waiting for something bad to happen, but do speak up if you know something bad is happening. Be diligent; very good advice.

Cypresscynthia, are you
Cypresscynthia, are you going through a reoccurance right now? Yes, broken bones should be investigated since this is a symptom that breast cancer has metastised to the bones. I googled and found that the 3 top sites that breast cancer metastazies to are:
1. bones
2. lungs
3. liver

carkris

winsomebulldog said:

My heart breaks for you,
My heart breaks for you, Meena! I am just starting this journey - just had my lumpectomy on Thursday - but I've already been thinking about the fact that I know I'll be spending the rest of my life wondering if it will come back. No matter how the treatments go or what the prognosis ultimately is down the road, there will just always be that fear in the back of my mind. I praise you for continuing to seek answers and wish that we didn't have to practically demand that our doctors listen to our fears and investigate our concerns. But God bless you, Meena, and I'll be praying for you!

also brain

also brain

smalldoggroomer

Oh Meena I am so very sorry .
I can't believe this has happened to you. I pray that your cat scan will come back good. some times I feel so helpless. You know you want to do or say something that will help and there is nothing you can do or say. Meena you mean so much to every one here. You are surely one of the strongest ladies I have ever had the honor of meeting.( Even if it is on the Internet ). Please take care and let us know what you find out.{{{ Hugs }}} Kay

natly15

Meena thank you for sharing
Meena thank you for sharing this. I only wish you didnt have to deal with this now, but it will certainly help all of us. My prayers are with you and pray you beat the beast again.

CypressCynthia

meena1 said:

Cypresscynthia, are you
Cypresscynthia, are you going through a reoccurance right now? Yes, broken bones should be investigated since this is a symptom that breast cancer has metastised to the bones. I googled and found that the 3 top sites that breast cancer metastazies to are:
1. bones
2. lungs
3. liver

Yes I do have bone cancer
Yes I do have bone cancer (from breast). I was just trying to say (I guess not well) that, if you are really worried about something going on with your body, do be persistent with your docs.

And Meena, please hang in there. You are very much in my thoughts and prayers.

survivorbc09

CypressCynthia said:

Yes I do have bone cancer
Yes I do have bone cancer (from breast). I was just trying to say (I guess not well) that, if you are really worried about something going on with your body, do be persistent with your docs.

And Meena, please hang in there. You are very much in my thoughts and prayers.

Thanks Meena for writing
Thanks Meena for writing this for us! Praying for you and all of us every day!


Hugs, Jan