I would love some advice.....on a scary topic. Breast cancer.

[FireGoddess]

Sundial - Thanks for your support and concern. It''s really helping a lot. I haven''t told anyone at work yet and it''s hard to put on a happy face, or even be productive. It helps to be able to get advice, support,and caring here!!!

 

[eks6426]

Firegoddess---I totally understand how your mom isn''t wanting to get a 2nd opinion. My first husband didn''t no matter how much I tried. I even had appointments set up with research hospitals and he wouldn''t go. Now, with my former Father-in-law, it''s the same thing all over. He seems happy with the local doctors and doesn''t want to go to the effort to get the 2nd opinion. I think when people get the cancer diagnosis, they want to deal with it as quickly as possible AND think about it as little as possible. So, it''s easy to take the recommendations of local doctors since that''s the easiest path. But maybe your mom is in a good location with a research hospital already???

As for your dad, the cooking classes were helpful to me as the spouse who wanted to "do something." I did a whole series on mind-body type things in cancer. I taught my first husband Yoga (learned in class), made very healthy meals, made him fresh juice, sprinkled his salads with flax seeds etc. It made me feel useful. You might have your dad call the Cancer Treatment Centers of America--they''re good for finding the "holistic" type classes.

 

[AmantdeChat]

So sorry to hear about your mom.

I wish I had some advice or a personal story to share, but I don''t. However, I wish your mother the best of luck in the coming months and I am sending positive vibes and strength to you and your family. Take care.

 

[FireGoddess]

IslandDreams - I do need to find out if there is a research hospital associated with where she is being treated. I''m not sure since I moved away from home almost 15 years ago! I will find out though. I visited the website you talked of and got some good nutrition info there - I do want to see if I can find some classes for my dad.

Amant - Thanks for your post - I will take all the luck and good vibes and strength I can possibly get.

SanDiegoLady - Thanks for your sweet words and all the hugs. I''m going to put some of them in my pocket for later.


I also visited www.amazon.com - I wanted to find some books to send home, found one for my dad on being a spouse of a woman with breast cancer which will hopefully help him, and also a bunch for my mom of survival stories and tips from people who have gone through it. If anybody has any book recommendations, I''m also all ears about that!

 

[canuk-gal]

HI:

Gosh, I am very sorry to hear about your Mom and her diagnosis. Healing thoughts your way.

kind regards--Sharon

 

[diamondlil]

Firegoddess, I''m so sorry to hear about your mother. You''ve come to the right place for support.

My mother too was diagnosed with breast cancer about 3 years ago. My mother had mammograms regularly and multiple biopsies over the years, all of which were negative until that time. Her lump was detected on mammogram. She was then sent for ultrasound for confirmation followed by biopsy. She was stage II by the time she was diagnosed. The following year was difficult, but she made it through her surgery, chemo, and radiation like a champ. She is now on tamoxifen and long-term prednisone for polymyalgia rheumatica. The doctors will not blame her polymyalgia rheumatica on the chemo, but my mom believes that taking the drugs compromised her immune system leaving her with excruciating pain. Prednisone is the treatment, and the side effects are pretty bad.

At this point, I have fear that my day will come. I did have a lump removed when I was in my mid 20s. Thankfully, it was only fatty tissue, but since my mother''s diagnosis, I have a fear. I have had yearly mammograms but am seriously considering ultrasound as well. I''ll need to look into my health insurance and see if they will cover it. It''s sad to think they wouldn''t, but I would not be surprised.

Thank you for bringing this to our attention. Breast cancer is not something any of us like to think about, but we must! If having an ultrasound yearly in addition to or in place of a mammogram is more effective at diagnosing breast cancer, then why isn''t ultrasound used as the standard diagnotic tool? I''ll be sure to look into this.

You and your mom are in my thoughts and prayers.

 

[movie zombie]

I would not normally post something like this here because it is in many ways political, but we are all concerned about breast cancer and the appropriate tools to help in diagnosis. i rec''d the following from Public Citizen. there is a bill in the Senate that would allow insurance companies to deny us even mammograms and other cancer screening/treatments. since we have discussed, albeit only briefly, insurance''s role in diagnosis and treatment, i thought everyone should be aware of this:

"Join thousands of Americans in a national call-in to protect your health care.Call the Senate switchboard toll free TODAY: 1-800-828-0498. Ask for your Senators'' offices and urge them to VOTE NO on S. 1955, the "Health Insurance Marketplace Modernization and Affordability Act."

Despite the tremendous need to make health care more affordable, the Senate is planning to vote next week on S.1955, legislation that would wipe away critical health insurance protections and make health coverage more expensive. In fact, this bill should be called the "Lose Your Health Care Bill."

If S.1955 is adopted, you and your family may no longer have coverage for: · Mammograms· Breast, cervical, colon or prostate cancer screening or treatment · Child Immunizations · Well-child check-ups · Mental health care · Diabetes education and treatment including insulin and test strips Instead of making health care more affordable for those who need it most, S.1955 would wipe away state protections that prevent insurers from charging higher premiums based on health, gender, age – or even where you live.

Americans have much to lose from this bill. ACT NOW! Please urge your Senators to vote NO on S.1955, the "Health Insurance Marketplace Modernization and Affordability Act," when it comes to the full Senate next week."

i apologize if i have offended anyone with this post. i have, of course, called both my Senators.

however, i shudder to think how many more women like Firegoddess'' mother and like us will suffer if this bill is passed.


movie zombie

 

[Linda W]

You sure didn''t offend me. All I can say is well, well, well, look what our government is trying to do now.


Linda

 

[FireGoddess]

As soon as I can make some phone calls in private, I''m SO on it. I mean, the system is ALREADY ridiculous....but this takes the freaking cake.

 

[Linda W]

I just made the phone calls. This is a complete outrage. Do they not care if people get cancer now, if there is no screening? What are they thinking? Oh wait, they aren''t thinking at all.

 

[FireGoddess]

I made the calls. This is seriously important. Solidarity ladies.

Canukgal - Thanks so much for your well wishes and healing thoughts!

Diamondlil - Thanks for sharing the story about your mom, and about your own fears. I definitely think we need to be proactive about this, especially in light of MZ''s post. Things need to get BETTER, not WORSE. This is an outrage. I am glad to hear your mom is fighting this - it is a war, not just a battle.

I hope the books I sent mom help a little bit - she''s having trouble sleeping (as you can imagine) so I hope the survival stories and tips from those who have gone before her help her to feel better and not just dwell on percentages, numbers, and that sort of thing.

 

[tawn]

That''s ridiculous! Prevention always costs less than treating problem! Why the Government is making the decisions that you Doctor "should" be able make is beyond me!

Has anyone followed Ashley Judd and her thoughts/opinions on how the current administration is going backwards on women''s rights and healthcare issues? I''ve heard her on an interview on the radio several months ago, and she was addressing this very issue! I''m going to have to go do a little research...

 

[moremoremore]

I''m *so* sorry fire. I can''t imagine how you and your mom feel....Sending my best wishes and thoughts your way...

 

[diamondlil]

The other thing I just thought I''d mention, FG, is that my mom did join a support group at the time of her diagnosis. Last year when we went to Florida for a visit, I went to a meeting with my mom and got to meet everyeone. All the ladies had varying stages of disease with various treatments, all ages from 30s to 80, ALL SURVIVORS. These women were truly inspirational!!! My mother still attends her group for the once-per-month get-together, and it has helped her on so many levels. I hope your mom will consider a group too.

 

[mrssalvo]

Date: 5/4/2006 6:13:25 PM
Author: FireGoddess

As soon as I can make some phone calls in private, I''m SO on it. I mean, the system is ALREADY ridiculous....but this takes the freaking cake.

I called too despite feeling it''s pointless. One of my senators is Bill Frist, a doctor of all people

who supports the bill.

 

[ammayernyc]

I''m so sorry that you have to go through this.

My mother was diagnosed with breast cancer at 45 with her first mamogram. But it had spread already so she had to go through chemo and radiation. I honestly don''t know what stage it was since I was young and my parents didn''t discuss it with me. She went through about a year of treatment and was able to keep her breasts, and she was fine after that. It''s hard to be so far from your mom when she is going through this. I know that with my mother, it made her much more frustrated and upset when everyone was giving her different advice. Always get a second opinion, but then you have to trust what the doctor says. It''s hard, very hard, but consistancy seems to help.

My own personal story is that the ob/gyn suggested that I get my first mamogram last year when I turned 30. Would you believe that I had to call several places becuase I was denied a mamogram, on my doctors orders, becuase I was too young! I was so furious!!! But, I found a place that would do it and all was fine.

Good luck and many prayers for you and your mom.

 

[tawn]

Date: 5/5/2006 12:12:17 PM
Author: AmandaPanda
I''m so sorry that you have to go through this.

My mother was diagnosed with breast cancer at 45 with her first mamogram. But it had spread already so she had to go through chemo and radiation. I honestly don''t know what stage it was since I was young and my parents didn''t discuss it with me. She went through about a year of treatment and was able to keep her breasts, and she was fine after that. It''s hard to be so far from your mom when she is going through this. I know that with my mother, it made her much more frustrated and upset when everyone was giving her different advice. Always get a second opinion, but then you have to trust what the doctor says. It''s hard, very hard, but consistancy seems to help.

My own personal story is that the ob/gyn suggested that I get my first mamogram last year when I turned 30. Would you believe that I had to call several places becuase I was denied a mamogram, on my doctors orders, becuase I was too young! I was so furious!!! But, I found a place that would do it and all was fine.

Good luck and many prayers for you and your mom.

I had asked my Dr. several times after turning 30 if I should get one, because my maternal grandmother had it...and was basically told the same thing, that I was too young. Went to a different Doctor, who freaked out when he found out that I hadn''t gotten a baseline at 30, and turns out his reaction was so strong because his wife was suffering with Breast Cancer at the time. He retired, but my new Dr. already mentioned that it was almost time to set up an appointment for another one...I ended up getting my baseline at 35 and he said I should go every year due to the family history.

Make sure that everyone at least gets a mammogram and check into the ultrasound! The odds...1 in 8 women...that''s just too high!

 

[FireGoddess]

Moremoremore - Thanks so much for your good wishes and thoughts...

Diamondlil - I definitely want to talk to my mom about joining a support group - I really think this could help her. She certainly needs an outlet...

AmandaPanda - Thanks for sharing the story about your mom. I''m glad to hear she made a full recovery. My mom asked about the genetic component and they suggested just that we start getting mammograms at 35. However I am going to push for an ultrasound as well, for baseline, because of what happened with my mom. I will be 32 by the time my next dr appt comes up (end of the year) so we''ll see what they say.

 

[movie zombie]

i''m really not trying to hijack this thread but, geez, it just gets worse and worse: http://action.peopleoverprofits.org/action/index.asp?step=2&item=29897

first i rec''d the below then went to the link provided for ''telling congress'' and it took me to the people over profits group. i think i''m going to be physically ill.


"Please read the below email from medical malpractice victim Alice Lloyd. As the Senate prepares for debate on legislation that will restrict the rights of people like Alice, we need to make sure her voice is heard. Please read, post to blogs, and forward to as many people as possible. -Kristin

My name is Alice Lloyd. I''m a triple amputee from Morganton, North Carolina. Please read my story and pass it along to everyone you know so we can work to prevent it from happening to anyone else. In 1998, I went to a walk-in clinic with what I later learned were four out of the five symptoms for sepsis, a blood infection that can be fatal if left untreated. I had a temperature of 103, high white blood count, low blood pressure, and a rapid heart rate and the clinic advised me to go to the emergency room if my symptoms became worse. The next day around 1 p.m., I went to the local hospital where it was noted that I had been to a clinic the day before. The hospital, however, did not call the clinic for my test results, which would have suggested sepsis. I waited undiagnosed and in excruciating pain for hours. They gave me morphine, but no one even took my temperature for twelve hours, even after I became confused and disoriented. At 3 a.m. a doctor finally ordered the simple antibiotics that would save my life, but it took another two hours for them to be administered. It took sixteen hours to receive a simple antibiotic. Because of the delay my limbs were irreparably damaged. They amputated both of my legs above the knees, my left arm and all the fingers from her right hand. I still have one thumb. I went to be fitted for the prosthetic hand, but the insurance company refused to pay and asked me, "What do you need a hand for?" I''m 55 and used to teach preschool at a local church. With no legs, one arm and only one thumb I''m forced to stay at home. From my wheelchair I care for my elderly mother. I use a Velcro fork strapped to my remaining hand to eat. Congress is trying to pass a law that sets an arbitrary limit for pain and suffering. How can Congress, from Washington, DC, lump all injured people into the same pool and set a dollar amount? Shouldn''t a judge and jury make this decision? People who have not taken money from the insurance companies? Please tell Congress, and more importantly, everyone you know my story. What happened to me could happen to anyone."

i remember many years ago a woman i knew had a breast removed due to cancer. she was a rather large busted woman and wanted 1-a reduction on the other and 2-a reconstruction at the removed area so she''d be balanced. the insurance company denied her: a prosthetic in her situation wasn''t going to make it. she fought it and won.....i wonder if that would be true now or a few years from now.......

the way things are going, we [mostly women] aren''t going to have any peace of mind when it comes to our medical care.

movie zombie

 

[monarch64]

FireGoddess: I will be "practice" walking 18-19 miles tomorrow morning with my team, and I will be bringing up the topic of ultrasounds as a method of detection so that I can raise awareness within my circle of teammates, and they in turn, can relay the message to others, and so on.

I will be thinking of you and your mother as I walk tomorrow, and sending positive energy your ways. Hang in there! I am cheering (and walking) for YOU!!!

 

[FireGoddess]

Date: 5/5/2006 11:18:55 PM
Author: monarch64
FireGoddess: I will be ''practice'' walking 18-19 miles tomorrow morning with my team, and I will be bringing up the topic of ultrasounds as a method of detection so that I can raise awareness within my circle of teammates, and they in turn, can relay the message to others, and so on.

I will be thinking of you and your mother as I walk tomorrow, and sending positive energy your ways. Hang in there! I am cheering (and walking) for YOU!!!

Thank you SO SO SO much Monarch - seriously. The first ''happy'' tears I''ve cried yet, to be truthful. I hope your teammates do spread the word so we can get this going! Good luck and I hope your 18-19 miler went well...I''ve been through it myself (ran the Houston Marathon and did a six month training program) so I remember the 18 miler quite well...and the 21 miler. That''s as far as we went before the actual marathon itself. I hope it went well!

 

[diamondseeker2006]

I don''t often venture over to this forum, but I wanted to say I hope your mother will be well as soon as possible, FG! I am so sorry to hear she is having to go through that.

I go for my yearly checkup in two weeks, and I''ll ask about the ultrasound issue. I have had ultra sound a few times because of cysts, but I am doubtful insurance would cover it just because a patient requests it. I mean, I''d like to have a yearly full body MRI, but I don''t think insurance pays when there is no reason for the referral. I wonder how much ultrasound costs if you just choose to pay for it? I''ll try to give an update after I go to the doctor appointment.

 

[monarch64]

Date: 5/6/2006 7:37:24 PM
Author: FireGoddess

Date: 5/5/2006 11:18:55 PM
Author: monarch64
FireGoddess: I will be ''practice'' walking 18-19 miles tomorrow morning with my team, and I will be bringing up the topic of ultrasounds as a method of detection so that I can raise awareness within my circle of teammates, and they in turn, can relay the message to others, and so on.

I will be thinking of you and your mother as I walk tomorrow, and sending positive energy your ways. Hang in there! I am cheering (and walking) for YOU!!!

Thank you SO SO SO much Monarch - seriously. The first ''happy'' tears I''ve cried yet, to be truthful. I hope your teammates do spread the word so we can get this going! Good luck and I hope your 18-19 miler went well...I''ve been through it myself (ran the Houston Marathon and did a six month training program) so I remember the 18 miler quite well...and the 21 miler. That''s as far as we went before the actual marathon itself. I hope it went well!

You are more than welcome, FG! We "practice" walked 18 miles yesterday, and man do I have some blisters, lol! Just my pinky toes, though...hopefully they will heal fast. I thought of you and your mom, and I did bring up your story and the 10 of us discussed it pretty thoroughly, so I hope that I''ve planted a seed with these women and they will in turn spread the word.

I can''t imagine RUNNING a marathon! Good for you! It''s amazing what we humans can do when we put our minds to something and expand what we think are our physical limitations. One of my teammates is a 36-yr. old who has lost 164 pounds over the last four years--such an inspiration.

I hope things are getting a little better for you and your mom and family...I will keep spreading the word about ultrasound testing and will keep you and your mom in my thoughts. You''ve both been an inspiration and I''m moved by your story, and you''re keeping me motivated as well. Thanks again for bringing this to everyone''s attention!

 

[FireGoddess]

Glad to hear your practice walk went well Monarch. I used alot of moleskin on my feel for those blisters!

Diamondseeker, thank you for your well wishes. Definitely inquire about the ultrasound. They will likely tell you that unless you ''think'' there''s a reason, they don''t need to do it. They told my mom that for YEARS while the cancer was growing. Same thing this year. They only did it because she was really concerned and only did it to ''calm her nerves''. Some ''calming'' that turned out to be - advanced breast cancer. You are your best advocate.


Mom goes in today for a bone scan and full body scan to see if the cancer has spread. We find out the results sometime on Thursday.

 

[Lorelei]

Hang in there FG, still sending out thoughts and prayers to you all. Well done Monarch - you are an inspiration!

 

[firebirdgold]

I haven't read all the posts, so forgive me if I'm repeating.

First off, find the closest expert. When it comes to this, you want the very best in the field.

Second off, try to find a Breast Cancer research trial. NIH should have info on all the trials, but they may only be accessible by your doctor. (I know the have the info since a few years ago my sister helped design their information sharing system and their site. It's scary how many doctors had to be taught to use the web!) That's what we did when our grandmother got breast cancer. She is now cancer free!
Not only will your mother get the best care available, but there's a chance she'll also get a new treatment that's even better!

Good luck and hang in there!

 

[monarch64]

http://msn.foxsports.com/mlb/story/5594322

Pink baseball bats will be used on Mother''s Day to raise awareness of breast cancer! What a great idea!

FG, hope your mom''s doing better...I told the gals in my office this week about the ultrasounds, and also told my mom, who is spreading the word to all her friends and family where she lives. Take care!

Heather

 

[Dee*Jay]

Firegoddess, big hugs and warm thoughts going your way. Let us know how the results come back tomorrow.

 

[FireGoddess]

IndieJones - thanks for the advice. I will definitely check into clinical trials and whatnot as soon as I hear some results from the doctors.

Monarch - way cool about the bats! Glad to hear the word is continuing to go around. I spoke to a coworker who had stage 0 breast cancer and was all about mammograms being the be all end all, till I told her about my mom. Slowly, surely, trying to pass the word, but 99.9% of people I tell never knew that mammograms don''t detect all types of breast cancer.

DeeJay - Thanks so much! I''ve been reading up all day on breastcancer.org - such a great site and really informative - gave me lots of questions to be ready to ask the doctor tomorrow. Big deep breath.

 

[hlmr]

Nothing to add - just checking in to let you know my thoughts are with you and your mom.

Heather