'Drive By' Mastectomies

kmccraw423

If there is already a thread for this, my apologies.  If not, my sister sent this to me - please sign this petition.  I have displayed the whole e-mail.

Mastectomy law change-Important!!

I'll never forget the look in my patients eyes when I had to tell them they had to go home with the drains, new exercises and no breast. I remember begging the doctors to keep these women in the hospital longer, only to hear that they would, but their hands were tied by the insurance companies.

So there I sat with my patient giving them the instructions they needed to take care of themselves, knowing full well they didn't grasp half of what I was saying, because the glazed, hopeless, frightened look spoke louder than the quiet 'Thank you' they muttered.

A mastectomy is when a woman's breast is removed in order to remove cancerous breast cells/tissue. If you know anyone who has had a mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery.

This Mastectomy Bill is in Congress now. It takes 2 seconds to do this and is very important. Please take the time and do it really quick! The Breast Cancer Hospitalization Bill is important legislation for all women.


Please send this to everyone in your address book. If there was ever a time when our voices and choices should be heard, this is one of those times. If you're receiving this, it's because I think you will take the 30 seconds to go to vote on this issue and send it on to others you know
who will do the same.

There's a bill called the Breast Cancer Patient Protection Act which will require insurance companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the 'drive-through mastectomy' where women are forced to go home just a few
hours after surgery, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached.

Lifetime Television has put this bill on their web page with a petition drive to show your support.. Last year over half the House signed on.

PLEASE! Sign the petition by clicking on the web site below.

http://www.mylifetime.com/community/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition

This takes about 2 seconds. PLEASE PASS THIS ON!

ktym

I've never been able to sign this.  I'm the one who convinced my doc to let me go home that day.  Hospitals offer nothing but germs and lack of sleep.  We just didn't find the drains hard to care for, and any emotional support I needed I got from my family, didn't really want it from strangers.  Give me my own furniture and fridge and cooking any day.  I realize for some that stay may be important, but have always felt there are more important issues in breast cancer that we could be focusing on rather then one 24 hr period that effects only a portion of us.

lewing

I feel similarly ambivalent.  I hate the thought of insurance companies kicking people out who aren't ready to go home (or for whom home is not a good or safe place to be).  But hospitals really are a horrible place to recover from surgery.  I think the key is to have a good system of nurse navigators/coordinators in place to provide patient education beforehand. 

I was discharged first thing in the morning after my late-afternoon surgery, and I was raring to get out of there.  If they'd even suggested staying another day, I think I would have tried to sneak out. 

(Edited to add: one thing that's always bothered me about this petition/email is the way it talks about women going home "with drainage tubes still attached" as though that's a horrible thing.  To me, that's disempowering, and creates unnecessary fear.  And c'mon - since most of us keep those freaking drains for a week or more, we're going to be leaving the hospital with them one way or another.)

Linda

GML

Lewing... DITTO!

airon

Hello Ladies

I live in Ontario, Canada.  Having my mastectomy wasnt as easy as I thought it would be.  But I did go home very next morning from the surgery.  This was a recurrance, DCIS once again, no node involvement, and strongly recommended I go with the mastectomy.  This, I did not regret, nor do I to this day.  This was in 2007.  However, living in Ontario, I  had accesss to nurses coming each day to change dressings, etc. until the drains came out and the staples....the hardest part was emotionally.  I never in a million years thought it would hit me as hard as it did.  I had a social worker come each day, and time finally kicked in to realize that I just needed to suck it up and get it over it!  Of course, she did not say those words...but the important words she did say to me, made sense, and now  "it is a new normal".  Onward we go ladies.  I still have a healthy breast left, and hopefully in the very near future, there will appear different treatments that will work and no need for mastectomies.  It is coming! 

kmccraw423

Some women may very well be able to come home the same day just as some women have a baby and practically get off the delivery table, pick up the baby, and go home.  Yes, I don't get the drain part as it takes up to 2 weeks to stop oozing and no one is going to keep you in the hospital until they remove the drains.  However, when my doctor feels I should go home because he/she is concerned with my health.  When an insurance company tells me I should go home it is a cost issue.

In my case I was operated on twice within hours of each other due to complications.  When I awoke the next day I just wanted them to attach hoses to input nutriton and tubes to handle the output.  All I wanted to do was lie in the fetal position.  The pain was so bad.  When the surgeon came in and said I should be up and walking the halls he would have been in serious trouble if I wasn't in so much pain.  In addition, I was on my own once home.  Visiting nurses only came 2-3 times each week which ended within a couple of weeks - again, insurance policy.

lewing

Kathleen, what a nightmare.  Totally agree that it's BS for insurance companies to override the medical team's best judgment in circumstances like that.

Linda

crazy4carrots

Just a curious Canadian here with a couple of questions:

1. For those of you with private insurance, how confident are you that your policy will indeed cover everything prescribed by your doctor?

2. Does your policy limit you to a particular set of doctors/healthcare facilities? 

p.s.  My mastectomy was actually pain-free and I was chomping at the bit to go home that evening.  No such luck -- had to stay there til the surgeon came in to see me the next morning, to tell me the SNB didn't work.  The drain was a nuisance but, like airon, I had a visiting nurse check on it regularly.

ktym

Madalyn, I'd sign that petition!

Judy1992

Hi All....

Background: 

Rep. Rosa DeLauro, D-Conn introduced the first version of the bill in 1996, after a surgeon in her Connecticut district told her she'd had trouble getting insurers to cover post-mastectomy care.

Currently there are 20 states that mandate a minimum length of stay of 48 hours for a mastectomy.  All of the states that mandate coverage of an in-patient care stay allow the physician to make changes to the length of stay, based on the woman's needs, regardless of the minimum length of stay.

Marisa Weiss, founder of this website issued this letter:

Dear Representative DeLauro:

I am compelled to write this letter on behalf of my constituency: the thousands of women who trust me with their lives as their personal doctor, and the eight million women who trust Breastcancer.org for the best medical information about breast cancer. As an oncologist -- and as President and Founder of Breastcancer.org -- I have a unique perspective on the needs of these brave women.

When a woman has a mastectomy, her life is on the line. And so are her relationships with all of those she supports ... and those who care for her. The impact is enormous and the stakes are extremely high.

Therefore, the decision about the length of needed in-hospital recovery time following breast surgery must be made within the sacred relationship between a woman and her doctor. Not reduced to a business decision that overrides a doctor's best judgment and the patient's best interest.

Breast cancer is a serious condition that requires serious -- and sensitive -- attention to the physical and emotional needs of each patient.

As someone who has treated thousands of women, I know that the care of these women at this most vulnerable and high-risk time must be individualized. There is no "one size fits all" solution. To suggest otherwise demeans the challenge these women face in their fight against breast cancer.

When insurers set themselves up as the "hospital police," short-cutting the in-hospital recovery process solely for economic reasons-and in disregard for best medical practice-legislation must be enacted to protect American lives.

This same problem has already been addressed with baby deliveries. Women who have mastectomies certainly deserve the same respect.

I thank you for your initiative in championing this life-saving Bill, and urge Congress to take proactive steps to eliminate this misguided practice.

Sincerely,

Marisa C. Weiss, M.D.

Press release from Rep DeLauro follows:

For Immediate Release Wednesday, September 24, 2008 Print Document

Contact: Contact: Kaelan Richards 202-225-3661 Close Window

DeLauro Delivers Strong Floor Statement in Support of Breast Cancer Patient Protection Act House expected to pass legislation this week Washington, D.C. - Congresswoman Rosa L. DeLauro (CT-3) spoke on the floor of the U.S. House of Representatives in support of the Breast Cancer Patient Protection Act (to watch the video, please click here) yesterday (Tuesday 23 September 2008) evening. The House is in the process of considering DeLauro's legislation, which would allow a woman and her doctor to decide whether she should recuperate from a mastectomy or lumpectomy for at least 48 hours in the hospital or whether she has enough support to get quality care at home. A vote on the bill is expected this week and could occur as early as today. Below is the text of DeLauro's remarks (to watch the video, please click here). Thank you Mr. Speaker, after too many long years, this is a historic moment. After too many lost opportunities, this is our chance to make a difference and to take an important step towards meeting our commitment to the women of America. I want to thank my colleague Chairmen Dingell with whom I introduced the very first version of the Breast Cancer Patient Protection Act over a decade ago. It is his partnership - and that of our colleagues - Chairmen Miller, Rangel, Pallone, Stark, and Andrews - who helped make this day and this vote possible. More than 12 years ago, I first met Dr. Kristen Zarfos. She walked into my office in Connecticut and told me that HMOs were forcing her to discharge her patients before they were ready - sometimes just hours after mastectomy surgery. Dr. Zarfos' experiences inspired me to get involved. Her tireless work with patients in my state of Connecticut, and with a network of doctors she knew around the country, gathered support for this bill from the grassroots all the way to the Congress. Today, a woman's chance of developing breast cancer in her lifetime is one in eight - almost everyone knows someone who has suffered from this disease. If you have watched a loved one fighting for her life, you understand how important it is to have not only the loving support of family as I did during my fight against ovarian cancer, but also adequate recovery time in the hospital after surgery - so you have the professional care to begin healing and avoid infection. A mastectomy is not an easy surgery - it is physically and emotionally traumatic. That is what the Breast Cancer Patient Protection Act is all about. It says that when it comes to mastectomies and lumpectomies, adequate recovery time in the hospital should not be negotiable. The last thing any woman should be doing at that time is fighting with her insurance company. This bill does not mandate a 48 hour hospital stay if a patient chooses to go home sooner, nor does it set 48 hours as a maximum amount of time a woman can stay in the hospital. It simply ensures that any decision in favor of a shorter or longer hospital stay will be made by the patient and her doctor, and not an insurance company. It would also ensure women have access to second opinions and adequate hospital stays after having a lumpectomy. Some may argue that the time for a bill like this has already passed - that states are beginning to address the issue. But the truth is that drive-through mastectomies continue to this day. At the Energy & Commerce subcommittee hearing this Spring, breast cancer patient Alva Williams testified that she had a mastectomy on March 6, 2006 and was sent home several hours after surgery. Her insurance company would not cover an overnight stay. Ms. Williams had family to take care of her at home, but they had no medical training and she developed an infection in the incisions. Recovering from the infection caused Ms. Williams' chemotherapy treatments to be delayed by six weeks. All across the nation women continue to suffer the same way that Alva Williams suffered - physically and emotionally and yet without the care they should rightfully be getting for the insurance premiums they have paid. And all across this nation, people everywhere are saying: "No More." 23 million Americans have signed Lifetime Television's petition calling for the Breast Cancer Patient Protection Act's passage - now with 221 co-sponsors in the House and Senators Snowe and Landrieu leading 19 cosponsors in the Senate - strong bipartisan support for these most basic patient protections. I urge my colleagues to support the Breast Cancer Patient Protection Act and make this day a powerful turning point. We have a tremendous opportunity today to make it clear to women, to cancer patients, and to their families: we value your health.

In March 2009, DeLaura introduced the bill HR1691 for the sixth time and Sen Olympia Snowe introduced the same bill to the senate S688.  Both House and Senate bills are in committee.  Last activity was a hearing on HB held on Oct 8, 2009: House Energy and Commerce: Subcommittee Hearings Held.

Dr. Weiss provided testimony on a number of bills regarding the EARLY Act, the Mammogram and MRI Availability Act, the Eliminating Dispartities in BC treatment Act and the Breast Cancer Patient Protection Act ... have posted her testimony on the

Sec. 10413. Young women's breast health awareness/support thread

sam52

'No-one is going to keep you in until the drains come out'......I beg to differ

Here in UK we stay in hospital until the drains come out - in my case it was a week. Very occasionally someone will go home with drains in - usually at her own request.

At least we have choice.

greenfrog

I am in the UK and came home with my drain 20 hours after the mx. I then had daily visits from district nurse team until they felt it was time to take the drains out. (Drain removed 6 days after the mx.) 

I hate being in hospital and I would much rather be back with my family and kids, resting in my own bed, eating good food than listening to other patients snoring and moaning. And then there are all those hospital acquired infections to worry about. My understanding is that some patients can remain in hospital if they want to but it really isn't necessary. But the District Nursing team which is part of our much-maligned socialised healthcare is what enables us to have the choice.

I am having the other breast removed in a few weeks and am very pleased that it will be "drive through" so I can get home asap. In all honesty if I was told that I HAD to remain as an inpatient for a week I would go bonkers.

Mantra

I'm in Ontario and I went home two hours after my mastectomy. At the time, I begged to stay. The hospital I was at said mastectomy is an out patient procedure unless you have complications or you have health issues that might cause complications (heart problems etc). However, looking back, I was thrilled to go home the same day. My reasons are:

1. I was so knocked out that I slept the entire way home. I remember nothing except waking up in my own bed late that night. It made for an easy trip getting home; both for me and my family.

2. Afraid of germs and viruses that may be in the hospital.

3. Trust my DH & adult daughters to care for me more than I trust a stranger. I also really needed to be with my family and would have been devastated to have been separated from them during this traumatic period of my life; even for one night. As a side note: DH & DD are very okay with blood etc and stayed with me throughout my recovery (worked from home). Not everyone has family/friends who can help them at home. If I had no one to help me, than I would have wanted to stay in the hospital. Not sure how I could have managed by myself.

4. My home care nurse came everyday to empty my drains, change my bandages, answer all my questions, etc. She also provided additional support to my family; taking them aside and asking how they are managing both physically and emotionally and if there is any additional support they require. Home care was paid for by our government health plan.

5. That said, I am having a prophylactic mastectomy this month. It's in a different hospital and they want me to stay overnight. I'm not happy about it but will probably stay if they really push the issue. However, I know in Ontario, hospitals have a shortage of beds and often surgeries need to be cancelled because they don't have a bed available for the patient to stay overnight. In my case, I'd be happy to go home and give the bed to someone who needs to stay overnight.

6. I also have a fear that while I'm sleeping, they will come in and take my blood pressure and accidently do it on the arm that I had a SNB. I understand that they will provide me with a colourful wrist band that says "no blood pressure, IV, or blood withdrawal on this arm" but I still have a fear it may be overlooked when the night nurse does her rounds. I'm an extremely sound sleeper and will never wake up when they come in to check on me.

Snappygoddess

I had my mastectomy w/ 9 nodes removed in February of this year. I went home just a few hours after surgery with 2 drains and a numbing pump. The pump was attached to a very small tube and kept the incision site numb continously for 2 days and I was able to remove it myself. One of the drains came out a week later( I did all the dumping and measuring of fluids for both drains myself) and the other drain had to stay in for 3 weeks. I was not in a lot of pain.. was up and showering and washing my hair the day after(it hurt like hell to raise my arm but I was determined to wash my own hair)

I had the option of staying in the hospital overnight and chose not to. There was no point to it and I knew I would get more rest at home. I am on Medicaid through the breast cancer program and it has paid for everything the last 16 months( this was my 2nd breast cancer diagnosis) so I have been very fortunate.

I understand that not everyone is as lucky as I was to not have a lot of complications, although I did develop a seroma and am still having to go into the doctors to get it drained every week(it doesn't hurt, it's just annoying)  I really think being sent home with the numbing pump made all the difference in my not being in a lot of pain.!!

Oh and get this....my incision was closed with SUPER GLUE!! No outside stiches, No staples....omg what a difference....I would recommend every doctor using super glue to close an incision!!  

My best to all that are having insurance company problems!!