What do I not know about breast cancer?

[Mrs Mungo]

My baby sister (she's 30) was diagnosed with breast cancer about 2 years ago. She had a radical double mastectomy, chemo and radiation. She finished up radiation this past summer. At the same time, her hip started bothering her. We found out last week that it's spread to her bones, in several places. I'm worried that she has not and/or will not receive adequate treatment.

 

I feel like they should have done a bone scan sooner and caught this much sooner than they did. She is an introvert, she is shy, she has problems with authority figures, she will not advocate for herself, she doesn't even push for answers to medical questions, even though she's a nurse.

 

What questions should she be asking at this point? Help.

[gaillardia]

Just bumping this back up. I know nothing about patient advocates except in maternity. My mother had breast cancer. A very good friend had the aggressive breast cancer and she's actually doing pretty well after double mastectomy, chemo, radiation. Some areas of this country have very good hospitals and doctors for cancer treatment, others not so much.

I hope you can find out more for her, it sounds like she needs your help.:grouphug:

[cmarango]

First off :grouphug:. Cancer is very difficult and it sounds like she has a very aggressive form of breast cancer. Have they checked the other organs that are most susceptible to mets (ie. Liver, brain, lungs)? How many mets does she have (few vs. Numerous) and how large are they?

[Mrs Mungo]

First off :grouphug:. Cancer is very difficult and it sounds like she has a very aggressive form of breast cancer. Have they checked the other organs that are most susceptible to mets (ie. Liver, brain, lungs)? How many mets does she have (few vs. Numerous) and how large are they?

 

These are on my list of questions. They did a PET scan, but they have not done chest x-rays or other more specific tests yet. I'm really concerned about her lungs, because she smokes (dumb, stupid, I know, I hate smoking). There are 5 areas in her bones-her hip, her shoulders, her back and her neck.

[Marie in Oh]

Is it estrogen positive, progesteren positive, triple negative, IBC? This is vital to knowing how to treat it properly. I am assuming the doctors know this, but sometimes, at small hospitals, they treat all breast cancers alike, and they are indeed, not. I have two close friends who have walked this road and I have gone along for the ride. Neither of them had typical estrogen positive cancer. One had progesteren positive which was fed during her child bearing years, and the other had IBC. I am hoping your sister, at her young age, would have a great prognosis. NOt sure this helps much, but hopefully you can become her advocate if indeed she isn't getting the treatment she needs. She is so incredibly young for this to beat her. Praying here.

[Mejane]

Not really what you asked, but from my experience... My dad had lung cancer and would not leave the town he and his wife were living in, so he had treatment there. I think he would have done much better had he gone to a major cancer center. Here is a link of the top ten in the country: http://www.cancerlinksusa.com/centers.htm

 

If her cancer is particularly aggressive and/or the prognosis is poor, she might elect to try some of the new experimental treatments they offer.

 

I wish her the best of luck. :grouphug:

[Mrs Mungo]

Is it estrogen positive, progesteren positive, triple negative, IBC? This is vital to knowing how to treat it properly. I am assuming the doctors know this, but sometimes, at small hospitals, they treat all breast cancers alike, and they are indeed, not. I have two close friends who have walked this road and I have gone along for the ride. Neither of them had typical estrogen positive cancer. One had progesteren positive which was fed during her child bearing years, and the other had IBC. I am hoping your sister, at her young age, would have a great prognosis. NOt sure this helps much, but hopefully you can become her advocate if indeed she isn't getting the treatment she needs. She is so incredibly young for this to beat her. Praying here.

 

It's estrogen positive, but I don't know if they have tested for some of the other possibilities. It's not IBC.

 

Not really what you asked, but from my experience... My dad had lung cancer and would not leave the town he and his wife were living in, so he had treatment there. I think he would have done much better had he gone to a major cancer center. Here is a link of the top ten in the country: http://www.cancerlinksusa.com/centers.htm

 

If her cancer is particularly aggressive and/or the prognosis is poor, she might elect to try some of the new experimental treatments they offer.

 

I wish her the best of luck. :grouphug:

 

Thank you (and everyone!).

[GinaPagnato]

Check out breastcancer.org and post your questions. The women there will have tons of helpful advice and questions to ask.

 

I would also make sure your sister has someone to accompany her on her appts. Sometimes the information is so overwhelming that you really need another set of ears to take it all in. Then when you say, "Did the doctor say xyz?", the friend can say yes or no.

 

I've been in remission for 4 years, and I still get chest x-rays every 6 months, and blood work every 4 months. She should be aggressively followed up, as she is so young at diagnosis. I was 34, and it was alarming to everyone around me, which was scary, but in the end, advantageous. They treated me (and still do) like I was a time bomb.

 

Also, and I say this gently, do you know if she is BRCA positive? If she is, have you considered being checked yourself? A geneticist who specializes in cancer is the first place to start. A diagnosis under age 40 is particularly a red flag.

[JumpedIntoTheDeepEndFirst]

 

I would also make sure your sister has someone to accompany her on her appts. Sometimes the information is so overwhelming that you really need another set of ears to take it all in. Then when you say, "Did the doctor say xyz?", the friend can say yes or no.

 

 

This is huge-especially if she has issues with questioning and communication. I've done much of this with my mother through various issues. I also recommend finding the best treatment center you can-one that specializes in what ever the exact problem is should be better than another. (If that made sense.)

 

Other wise-just :grouphug: to you and your sis-this is rough to go through, hang in there.

[Mrs Mungo]

Check out breastcancer.org and post your questions. The women there will have tons of helpful advice and questions to ask.

 

I would also make sure your sister has someone to accompany her on her appts. Sometimes the information is so overwhelming that you really need another set of ears to take it all in. Then when you say, "Did the doctor say xyz?", the friend can say yes or no.

 

This is what the family is trying to tell her. I also suggested she bring a tape recorder, as per the suggestion of my best friend's dad (he's an oncologist).

 

I've been in remission for 4 years, and I still get chest x-rays every 6 months, and blood work every 4 months. She should be aggressively followed up, as she is so young at diagnosis. I was 34, and it was alarming to everyone around me, which was scary, but in the end, advantageous. They treated me (and still do) like I was a time bomb.

 

Also, and I say this gently, do you know if she is BRCA positive? If she is, have you considered being checked yourself? A geneticist who specializes in cancer is the first place to start. A diagnosis under age 40 is particularly a red flag.

 

My aunt was diagnosed with breast cancer at 42, my sister at 29. My sister's insurance is flat-out refusing to pay for BRCA testing. Her insurance specifically excludes all genetic testing for any reason. I've already seen a genetic counselor. They wanted my sister to be tested first, but they will still test me if that's not going to happen. My aunt was tested and it was negative for her.

 

This is huge-especially if she has issues with questioning and communication. I've done much of this with my mother through various issues. I also recommend finding the best treatment center you can-one that specializes in what ever the exact problem is should be better than another. (If that made sense.)

 

Other wise-just :grouphug: to you and your sis-this is rough to go through, hang in there.

 

Thank you and yes, it makes perfect sense. :grouphug:

[Laurie4b]

I"m sorry. Where does your sister live? Is she near one of the major centers?

[Harriet Vane]

No answers, but just wanted to tell you how sorry I am that she is experiencing this, and for the hard path ahead of her and those who love her.

 

:grouphug:

[Stacia]

No advice, just a :grouphug:.

[Mrs Mungo]

I"m sorry. Where does your sister live? Is she near one of the major centers?

 

She's in Oklahoma. She's a nurse who works for the state VA and her insurance suuuuuuucks.

[Jennifer in MI]

:grouphug: I can't read and not respond. I pray you get the answers she needs!

[Laurie4b]

Could she get to Anderson in TX or does her insurance limit her to OK?

 

I'm so sorry! It must make everything worse thinking "if only" and wondering if her care has/will make a difference in her prognosis. I know a woman who has beat metasticised (sp?) cancer back more than once, though she is being seen at a cancer center and they find the new spots very quickly.

[Impish]

:grouphug:

[justamouse]

She sounds like she is going to need you to be storming the gates for her.

 

She needs to get to a cancer treatment center that will check her every six months. Every six months, period.

 

:grouphug::grouphug::grouphug:

Edited November 24, 2010 by justamouse

[*Inna*]

No advice, just :grouphug::grouphug::grouphug:.

[Denisemomof4]

 

I would also make sure your sister has someone to accompany her on her appts. Sometimes the information is so overwhelming that you really need another set of ears to take it all in. Then when you say, "Did the doctor say xyz?", the friend can say yes or no.

 

 

 

this is an EXCELLENT point. I was that extra set of ears for my friend and her dh during his battle. There was so much to take in that eventually I went to the appts. with a little handheld tape recorder. This proved to be priceless.

[Denisemomof4]

please make sure the brain is checked. My friend's cancer had spread to the brain but wasn't caught until it had been there for too long. :sad:

 

With my limited experience, once it's spread to the bones, it truly needs aggressive treatment. I hope your sister can come to realize how important it is that she stand up for herself, and I hope she can be seen by one of the leading Cancer centers as there is one in TX.

:grouphug:

[momof3sofar]

As someone who is sitting here recovering from my double mastectomies right now I can't over emphasize how helpful the ladies (and a few men) have been over at http://community.breastcancer.org/. You can sign up yourself and ask the questions, she can sign up as well. They are all people who have BTDT and so many of them are surviving!!!!

 

Prayers for your sister!

[Mrs Mungo]

Could she get to Anderson in TX or does her insurance limit her to OK?

 

I'm not sure, I'm reading through her insurance booklets now.

 

I'm so sorry! It must make everything worse thinking "if only" and wondering if her care has/will make a difference in her prognosis. I know a woman who has beat metasticised (sp?) cancer back more than once, though she is being seen at a cancer center and they find the new spots very quickly.

 

It is really horrible to realize how much difference insurance makes in these situations. Yes, she had the cheap "I'm young and won't need this or that" insurance. I hate to think she might pay for it with her life. :(

 

this is an EXCELLENT point. I was that extra set of ears for my friend and her dh during his battle. There was so much to take in that eventually I went to the appts. with a little handheld tape recorder. This proved to be priceless.

 

This is the point I'm pushing.

 

please make sure the brain is checked. My friend's cancer had spread to the brain but wasn't caught until it had been there for too long. :sad:

 

With my limited experience, once it's spread to the bones, it truly needs aggressive treatment. I hope your sister can come to realize how important it is that she stand up for herself, and I hope she can be seen by one of the leading Cancer centers as there is one in TX.

:grouphug:

 

 

I hope so too.

 

As someone who is sitting here recovering from my double mastectomies right now I can't over emphasize how helpful the ladies (and a few men) have been over at http://community.breastcancer.org/. You can sign up yourself and ask the questions, she can sign up as well. They are all people who have BTDT and so many of them are surviving!!!!

 

Prayers for your sister!

 

Thanks, I will pass it on.

 

Thank you, again, everyone. I really appreciate the help and all of the thoughts. :grouphug:

[Peela]

I would personally not rely on orthodox medical treatments alone. I would encourage a wholistic outlook and check out alternate treatments including diet etc, to support the chemo etc. There are often experimental programs you can join too...my sweet uncle, in his 50s, had advanced kidney cancer when it was diagnosed..he was given 3 months to live. He was a Buddhist and decided to try an alternative treatment involving a soy derivative, through the hospital, partly as a way of helping others (as well as his meditation and vegetarian diet etc) and he lived 3 more years- and a good quality of life, too.

:grouphug:

[MBM]

I agree with Peela.

 

A good place to start would be Ralph Moss's website He's a medical writer, not an MD. Moss scrutinizes cancer medical studies throughout the world and attends conferences, meets with researchers and medical personnel, etc. His goal is to determine what works and what doesn't. Many promising, good things are happening nowadays.

 

http://www.cancerdecisions.com/

 

Be sure to look through the archives as well.

 

Has your sister tried anything to help her stop smoking? Would she be willing to try hypnotherapy? Sometimes other nurses practice this. It might be worth a try.

 

I will keep her in my prayers. :grouphug:

[iona]

:grouphug::grouphug:

[Ibbygirl]

My baby sister (she's 30) was diagnosed with breast cancer about 2 years ago. She had a radical double mastectomy, chemo and radiation. She finished up radiation this past summer. At the same time, her hip started bothering her. We found out last week that it's spread to her bones, in several places. I'm worried that she has not and/or will not receive adequate treatment.

 

I feel like they should have done a bone scan sooner and caught this much sooner than they did. She is an introvert, she is shy, she has problems with authority figures, she will not advocate for herself, she doesn't even push for answers to medical questions, even though she's a nurse.

 

What questions should she be asking at this point? Help.

 

Oh my dear Mrs. Mungo. :grouphug: I'm so sorry about your sister. I have no advice, but just wanted to give you a big cyberhug :grouphug: I hope your sister gets the care she deserves.

[Sara R]

I am hoping your sister, at her young age, would have a great prognosis. NOt sure this helps much, but hopefully you can become her advocate if indeed she isn't getting the treatment she needs. She is so incredibly young for this to beat her. Praying here.

 

Unfortunately, younger isn't better when it comes to cancer. Younger tends to mean more aggressive...

 

So so sorry about the mets diagnosis. That's not good, but it happens sometimes despite the best treatment. Sounds like you're saying that she didn't get a bone scan when her hip started bothering her? Did she report that symptom to the oncologist? If so, you're right; that's not good.

 

My doctors don't give me routine scans to see if the cancer has spread. I think they did studies and the scans did not increase survival but only increased anxiety. They find out whether or not the cancer has spread through symptoms (any kind of pain, unexplained weight loss, lumps & bumps, difficulty breathing). I'm supposed to report any weird symptoms that persist for a week or two to the oncologist.

 

I went to a major cancer center for my treatment, and I'm glad I did. I think that local treatment is okay for polite old-people cancers, but for young-people cancers you want the big guns.

 

What kind of support does your sister have, and what support is she willing to accept? I agree that coming to appointments with a recorder is a good idea. I kept a 3-ring binder with me with all of my notes, doctor records, scan results, questions for the different doctors, etc. Keeping organized help me feel control over an out-of-control situation.

 

I like the forums at http://youngsurvival.org. These are specifically for women who were under 40 at diagnosis. There is a mets board for women dealing with mets. I would take your question to them and see what they say.

 

Bone mets aren't good, but people can fight them for a long time. I'm so sorry that you and your sister are dealing with this. :grouphug: