A question about Angelina Jolie and Double Mastectomies

[truedelphi]

I have a question... First let me relate my experiences as a caretaker.

As a private duty Certified Nursing Assistant, I have taken care of several women after they had a single mastectomy.

I think it is fair to say that even when only one breast is removed, there is a quite an amount of suffering involved. The armpit area and the shoulder muscles that allow a person to use the arm on the same side of the body are too sore, swollen and disabled to allow only the most limited mobility for some time. (Can't remember if it took the women three to six weeks, but it was quite a while.)

On edit: Please make note of response number two below, as marybourg stated that when a woman is cancer free at the time of the operation, the lymph nodes are not removed and arm mobility may remain normal.

Our hospital system is so broken that women were released far before they should have been. Often they are instructed that they can, within 36 hours of the surgery, be at home, to feed themselves, bathe themselves, get to the bathroom, etc, change the bandages and then they are expected to do their own wound care!

Those women who were aware of the body's physiology,usually nurses or doctors themselves, would hire me to come in and feed them, bathe them and do the wound care. As well as help with normal household activities. (Pay the utility bill, handle guests arriving, and all of the may daily activities that life involves.)

There are also expected side effects. Cellulitis is one such illness that can afflict a person whose breasts are removed. Sometimes cellulitis lasts for the rest of the person's life! There is also the danger of staph infections, or complications from the anesthesia that was used. All of these things are extremely important factors. And they all need to be considered.

Why is it that Angelina doesn't talk about any of this? She only discusses her doing the reactive type of procedure she did, and no mention of any of the rest of it. I have no idea what it even costs to do this surgery - but I am sure it is not inexpensive. (Even though the surgeons and hospitals have already removed themselves from the "after care" part of the situation, it is still expensive!)

Jolie and Pitt have full time nannies, so I don't know if she would even need to consider hiring on private duty nursing help. I imagine that she also has premium health care,w ith the top surgeons who specialize in this available to her, 24/7.

Most of us don't have those resources.

I don't want to comment on my personal "take" on the wisdom or lack of wisdom in her doing this. I am not someone with an 85% chance of getting breast cancer. Nor am I feeling under the gun, with emotions surging about me, as she must have been. But I do want to point out some considerations that the "Hollywood-ization" for this procedure ignores.

Please make sure you can handle not using BOTH ARMS for a period of time. Make sure you fully understand your insurance policy and what to expect in terms of a hospital stay, and who will and how will the policy cover at home care, if at all. Please make sure you won't lose your home, or your job or your life, if you go down this road. Do avail yourself of any and all internet discussion groups; I know Yahoo used to have some decent discussion groups on various women's health problems, that gave me a lot of advice on how to obtain a decent surgeon, how to participate in the optimum situation for my health care, when I was thinking I might have another serious health problem. (Not breast related.) That was about ten years ago - I can only imagine that support groups on the web have expanded since then.

[peacebird]

1. Good points. My dear Aunt Ginger had a mastectomy in her late 70's, & they sent her home

alone two days later. Fortunately friends in her apartment building became concerned when they did not see her for several days and called the super to check on her. She had a massive infection and was so ill she was too weak to get out of bed to call for help.
She was hospitalized for a couple days, then sent home alone again. She had bloody oozing from the tube for almost a month. The lack of after care nearly killed her.
I wish she had told me she was having the procedure but she was very private, and I only learned all this much later.

[truedelphi]

4. I am so sorry to hear that your aunt suffered in this manner

And so glad to know that she did have friends in her building who would check on her.

I have been sort of hoping no one would respond to this topic, and that most people here had better situations than the ones I witnessed. And the people I was hired to help had above average incomes, and lots of medical know how - yet they still had problems arise they had not expected.

[Ilsa]

18. The nurses discharging her should have asked the

doctor for a social services referral to determine if she needed temporary live-in rehab services. There was a failure here in the chain of care somewhere.

[marybourg]

2. Since this was a prophylactic surgery, ie., there WAS

no cancer, her lymph glands and non-breast tissue were probably not removed. I'm sure there are people here with more experience in this than me who can give you a better answer.

[truedelphi]

5. That is good information, and

I will add a pointer in to the OP that points people here.

[winter is coming]

9. Also, if you're not in a situation where you have someone to help you, you could

do one side at a time.

[ScreamingMeemie]

3. I'm expendable in the eyes of the government and don't qualify for insurance. So no worries here.

[HiPointDem]

6. it's not only masectomies -- they push everybody out to take care of themselves, often with

inadequate resources or knowledge to do so effectively.

labor-saving/profit-making measures.

[truedelphi]

7. When people say "It can't happen here"

I wonder what reality they live in.

People in the USA are being slaughtered by DOCTORS, who took an oath to not do harm. And by hospital administrators, and also the insurance people with their "claims approval processes," who could care less about how patients fare after surgery.

I know of one instance when someone's insurance allowed them to
have an $ 84,000 heart by pass, but then the insurance personnel would not allow for the $ 6,000 round of antibiotics to prevent infection, so the guy died. This is what passes for "reality" in our nation.

[Ms. Toad]

13. Yes, but...

most of the "insurance wouldn't cover" is a matter of incompetence (not that it should matter).

Case in point (although less major):

My spouse has off the scale allergies, and most of the nasal sprays destroy the lining of her nose leaving her the choice between debilitating sinus headaches and a constantly bleeding nose. (The sprays are on top of at least three other daily allergy medications and desensitization shots which still can't keep the symptoms at bay.)

The doctor gave her a sample of a dry spray which didn't irritate the lining of her nose and kept the sinus headaches at bay. He told her that her insurance probably wouldn't cover it and that the way to start was to try to fill a prescription, have it denied, and appeal it.

I looked up the policy and found it is a step therapy, which means she has to try a drug on the regular formulary first (she's tried 3), and that it is a simple matter of calling the insurance company, initiating a pre-approval process (which can be completed instantly by phone) and getting approval. I gave that information to my spouse which (because of other health issues) she didn't get to him.

His office tried repeatedly to submit prescriptions. They kept getting rejected and finally just ordered a very costly substitute that she can't use(and insisted that they had gone through the appeal process and had been denied the appeal - which I know can't happen without generating notice to us of our appeal rights. I blew a fuse. Got on multiple phone calls (compounded because no one will talk with me because of HIPPA and my spouse (for the same health reasons) can't handle the negotiations. Once I got the insurance company to initiate the pre-authorization (after verifying there were no appeals filed - just repeated resubmission of the same rejected prescription), the process took less than an hour.

We had a similar experience on a different medication for my daughter. It required an intermediate test to determine what kind of fungus she had. She had an advanced test - which established not only the kind of fungus, but which anti-fungal medications it was sensitive to. Because it wasn't the exact test it was initially rejected. When we were able to link the doctor and the insurance company together it was approved instantly.

Any doctor with a contract with a particular insurance company should know how to obtain approval for a step drug, or an out of formulary drug which is required to treat a particular bacteria or fungus. Far too many don't. (And the brick wall, in my experience, can come from either the provider or the insurance company - but it is knowing my plan and pushing until one or the other gets tired enough of being beat up on that tears it down. And, with the most insurance savvy docs, the wall doesn't exist - I have been approved for at least two out of formulary medications or procedures which were infamous enough to be the subject of medical dramas because of this kind of nonsense. I was permitted to use them because the physicians who took the initiative to convince the insurance company that (in one instance) $600 of outpatient medication was a lot more cost effective than at least 2 weeks hospitalization. People now would laugh at the idea of hospitalization rather than medication, but it was nearly unheard of at the time.

But "should" and reality don't always match. I would not be surprised if the refusal above was because the doctors weren't familiar enough with the insurance plan - and the patient/family didn't have the resources (experience, time, specialized knowledge, money) to be able to push the right buttons.

It stinks. And no one, when they are at their most vulnerable, should have to fight the insurance companies. And certainly no one ought to be dying because the medication needed to keep them alive costs $6000.

[truedelphi]

17. When you have had a by pass surgery,

You really need the resources, especially someone to fight the insurers on your behalf. (As it is a massively overwhelming procedure, so you won't be up for the fights with the insurers etc.) I didn't have the ability to fight for stuff just after having a rather minor jaw surgery,. So became liable for the procedure myself. I can't imagine what I would be acting like after a by pass.

Anyway I hoped that our noblesse oblige was truly going to reform Health care, instead of making us continue to jump through hoops just so Obama could have the damn satisfaction that he could guarantee us this "uniquely American experience of having our health insurers be part of the process."

Where he came up with that above language I don't know, but most of those I knew who voted for him in2008 did so thinking he would be true to the young person he had been back when campaigning for US Senator from Illinois, complete with statements about how "the only logical and the best solution for health care reform is Single Payer Universal Health Care."

[roguevalley]

12. my angel father had an entire node of his lung removed

and was kicked out of the hospital six days later over the STRENUOUS objections and efforts of his doctors. He was reeling and I don't even remember how awful it was for him at home with us.

As for doctors ... my sister had a procedure done by our orthopedic doctor here to kill her sciatic nerve -she has a limb missing- and it failed. He refunded her money because 'it failed'. Broad bushes are awful and I am as guilty as anyone else but it isn't the doctors that make these decisions anymore, its the fucking insurance companies.

I am a HUGE candidate for shingles because I had the chicken pox so badly my head is scarred and I had them on the insides of my eyelids. It isn't covered by my insurance which is good insurance. I have to find 240$ to have the shot because they are too cheap. It will cost them thousands if I end up in the hospital but they don't care.

Fuck insurance companies. They kill people. God bless my sweet dad who suffered because of them and the doctors who tried to help him stay put.

[HiPointDem]

14. i hear you & have similar stories. as if the cruelty of disease and aging wasn't cruelty enough.

[roguevalley]

21. consider yourself hugged, honey

[HiPointDem]

31. ditto.

[Ms. Toad]

15. I'm pretty sure there is no relationship

between severity of chicken pox and likelihood of getting shingles.

That isn't to say the vaccination shouldn't be available - just that I don't believe you are any more at risk than anyone else (which should be comforting).

(And - if you do develop shingles, antiviral medications will almost certainly be covered, which greatly reduces the severity. My spouse has been on them twice. Each time she has caught the outbreak before blisters developed. Still miserable and exhausting, but less severe than most.)

[phylny]

16. I was advised by my doctor to get the shingles vaccine during my last routine checkup and I did.

I came to find out that our insurance company said I was too young to to be covered for the vaccine (I was 54 at the time) and we had to pay $78 for the vaccine. I figured it was better to have a milder case of the shingles and be out some cash, but $240 is a lot of money for the vaccine!

[dflprincess]

27. But wasn't it nice to hear you were "too young" for something just one more time?

I heard that from my doctor when I asked him about the shingles vaccine last fall. - It will probably be the last time I ever it hear someone say it and mean it.

Since then, my 90 year old aunt has had an awful bout of the shingles and she has been on a crusade to make sure all the "kids" in the family (meaning her kids, nieces and nephews) get the shot as soon as we turn 60. I'll qualify to get it next month and my doctor said just to go to Walgreen's for it, that there was no point in an office visit.

For the next 5 weeks I'm going to enjoy that I'm still too young for something.

[peacebird]

32. Shingles vaccine age was dropped to 55, I had it last year.

I had shingles about three years ago, at the time the age was 60, but my doc called me up to say the age had dropped and I was eligible. Insurance covered the cost.

[phylny]

33. Ha, that's a good one!

I hadn't thought of it that way! My doctor probably suggested it because I work with kids. I just turned 55, so it would have been nice had they told me the age was lowered to 55 (noting the other post) but oh, well

[dflprincess]

38. They must have lowered it since I spoke to my doctor about it last year

and I haven't had to see him since.

A few months ago my cousin (a nurse) told me the CDC and FDA weren't agreeing the age, one was saying 50 and one was saying 60 - maybe they split the difference?

[truedelphi]

19. Yes our doctors who are still practitioners are often on

The side of doing right. And deserve mention of that fact.

Sorry if I painted with such a broad stroke.

However I have known more than my share of doctors who went from practicing medicine to owning a hospital, as "that is where the REAL money is," and you have to wonder - was that Hippocratic oath they took only for the duration of their medical practice, or for just as long as they felt like honoring it!

i think if you have recent tax records and what not, you might find an 800 number for Merck and see if they will let you have it cheaper or let you have it free. Also, maybe you can can find a clinic that will let you have the shingles shot for much cheaper. My spouse needed medial tests done and it was supposed to cost him some $ 740 for the tests if done locally. He called around and found a discount place that did the tests for $ 600 cheaper.

And it could be that Merck will be dropping the price soon. There was some flaw in the ointment in terms of producing the vaccine, which made them not able to manufacture as much at one time as hoped. Now those difficulties are behind them, so with an increase in supply, there should be a drop in price:

http://online.wsj.com/article/SB10001424052702304444604577342053798804224.html

[truedelphi]

22. I think that only one in three people who have had

Chicken P even end up getting shingles. Also the vaccine is not a guarantee that you still won't get shingles:

"There is no guarantee Zostavax will prevent shingles in an individual, but it does reduce the risk. According to the FDA-approved Zostavax prescribing label, Zostavax reduced the rate of shingles by 51% versus a placebo in a clinical trial of people ages 60 and older, and by 70% in a separate study of people 50 to 59. The shot is associated with risk of hypersensitivity reactions and headaches." (WallStJournal citation.)

All of my friends (except one) who have had a very bad case of shingles are also people who don't eat that well. They love their fried foods. The woman who eats well but still got shingles got it after surgery, which can be a major stresser and can end up causing that reaction.

[hlthe2b]

8. I believe you are describing a radical mastectomy...

which includes removal of breast, some of the chest muscle and regional lymph nodes.

Jolie's procedure was less extensive, with the nipples saved and just the breast tissue itself removed, given she had no cancer.

Still an unpleasant experience, though I'm sure. But overall far less of an extensive recovery than what you are describing.

[Ms. Toad]

10. In addition to the point marybourg made -

which would have been my first response:

(1) I think the cellulitis is primarily related to the implant/preparation for implant process - so if you are not having reconstruction it may well not be an issue (or at least a less significant one). Portions of the skin cut off from good circulation (or which have limited circulation) are more likely to have bacterial infections (and be harder to fight). That may well apply more to skin around the breast which is being expanded that tissue which is attached to the chest wall and is able to create new circulatory paths or expand existing ones more naturally.

(2) the recovery time can vary dramatically depending on what has to be removed and the skill of the surgeon. Partly that was addressed by marybourg - but even when cancer is involved there is still much variation. My mother has has two mastectomies, by two different surgeons, with two different kinds of cancer. One surgery was major trauma which took months to recover and was extraordinarily painful and debilitating (including the development of lymphedema). The other was a non-event. She took one dose of narcotic pain medication in the hospital (mostly because she was afraid it would be painful) and nothing after that, we stopped at a restaurant on the way home from the hospital at her suggestion, and the home nurse she had retained for the first night in case she needed assistance in the middle of the night got a good night's sleep. Sentinel nodes were removed (and no more) in each case. The cancer was larger in the first case, but it had not spread so the surgery should have been very similar.

[s-cubed]

11. One of my sisters also had a double mastectomy.

She had cancer in one and was tired of having biopsies. The second one had a precancerous lesion. We made sure she had help for several weeks afterward, both with wound care, and everything else. She also had chemo which caused other problems, and again, one of us was with her for the worst of it. This is major surgery and not to be undertaken lightly. No one should be sent home after this without someone to help.

[Spitfire of ATJ]

20. Do you know why this is an issue?

Because our media is obsessed...

[BrotherIvan]

23. I pray for the day when the slash/burn/poison model of cancer therapy is a thing of the past

It is barbaric and heartbreaking. We need to get money out of politics and medicine for anything to change. Not in my lifetime I guess.

[laundry_queen]

24. I get what you are saying.

It's not a surgery to take lightly. My aunt had a single mastectomy (at first, until cancer was found on the other side) and it had spread to the lymph nodes, so she had to have those removed as well. Besides the long recovery, she had severe swelling in her arm because of the fluid build up because of the lack of part of the lymphatic system. After 5 long years of illness, she succumbed to ovarian cancer.

Her daughter found out she had the BRCA (1 or 2 not sure) gene. After seeing her mother suffer for 5 years, I'm sure the risks of a few months of infection and muscle weakness may have seemed minor. Luckily here in Canada she didn't have to worry about the financial side (the system is such that if you have 2 close relatives with breast cancer you can get gene testing for free and if you test positive, you can get a preventative double mastectomy and reconstruction at no cost). She had small children when she had it done. I'm sure she had a good support system in place for her recovery (she lives on the other side of the country from me so I wasn't there) and from what I understand, she was very relieved to have had it done and has no regrets.

I'm guessing the relative costs of this type of preventative surgery are less than a long drawn out battle with cancer. Also, if your chance of developing cancer is 87%, then you have to factor in the risks of all those cancer procedures (infection, reactions to medications and chemo etc). I don't think Angelina Jolie is telling her story to urge people to run out and get a double mastectomy. If it raises awareness then it's all good. Hopefully it also raises awareness on the lack of available affordable care for most women.

[truedelphi]

28. I so very much envy the Canadians their system of health care.

Here in the USA, most of the time an ill person has to fight their illness to get better, and to fight the Big insurers, etc.

Like you, I don't think Jolie is telling her story to persuade people to run out and do this. However, I posted this OP on account of how several of the patients I had let me know that had they been the average lay person, they would have believed their surgeons that they would be up and about within 48 hours - and that was far from the case for them.

[laundry_queen]

30. That's too bad the surgeons are telling them that.

I know that for some places sending people home after a C-section is done in 48 hours. I had 3 C-sections (and a vaginal birth that I went home AMA 12 hours later...because it was such a piece of cake compared to a c-section) and there was NO way I was ready to go home after 48 hours. They finally kicked me out after 4 days for my first 2 C-sections. My third C-section I went home after 3.5 days and it was much much too soon (I had some complications). Yet everyone says 4 days is plenty and 48 hours is standard in some places. It really is ridiculous and cruel.

I want so much for you all to get single payer....I wouldn't trade my healthcare system for a million dollars.

[Beaverhausen]

25. My 86 year old mother just has a mastectomy and lumpectomy

She is home less than 48 hours after surgery. In the side with the mastectomy they took lymph nodes but she has had no pain. None. Nor the side with the lumpectomy. No pain. She is amazingly ok. She is not having reconstruction -maybe that helps?

She has follow- up care and further appointments. I'm not really sure what you are talking about.

[truedelphi]

29. Ms Toad, up wards of this in response ten,

She mentions how one of her relative's mastectomy's was an easy peasy thing to recuperate from, while the other one was more problematic.

It could all be about how the surgeon deals with the neural network that lies connected to the tissue being removed. (I am speculating here.) Or perhaps it has to do with the way a person's nerves are laid out. people do differin basic physiology - just as someone may be more naturally muscular than another person, someone else may be more "nervey."

I know i have to have double pain meds for even minor tooth work - my nerves near my teeth and gums are exceptionally keen to respond to pain, and extend beyond the places where dentists expect them to be. I have above average tolerance to pain in most of the rest of my body, though.

[Rosa Luxemburg]

26. my mother (84) is taking Letrozole so hopefully - no mastectomy

I would have thought with mammograms and effective chemo these days that there would be no need for mastectomies?

[Tikki]

34. This is between Ms. Jolie and her Doctor. Sure she made this public to get ahead of it in...

the press.

I would never second guess a decision a Doctor and patient make.
I might ask for a second opinion, we do not know if Ms. Jolie did or didn't.

All I do know is that I've said goodbye to cancer victims in sad and painful ways.


Tikki

[truedelphi]

35. i did not say it was not between

Jolie and her doctor.

Mastectomy is now a procedure in the headlines. I was bringing forth a discussion about the procedure. granted I am not a Hollywood movie star, though I confess that at times Mr T Delphi thinks he is one of People magazine's sexiest men on the planet, I do think there is much to discuss regarding the procedure(s.)

I learned several things by hearing out people's comments. Maybe I am the only person who did learn something, but that is good enough for me.

[Tikki]

36. I am sorry...I just want people to know...

that any kind of procedure is a personal issue.

I believe, an may be wrong, that Ms. Jolie only came forward with this because she knew the press would
make their own spin on this.

Stories shared about many realities of procedures and the after effects are important for others facing similar experiences.


Tikki

[truedelphi]

37. No need to

apologize -

It is a heavy topic and it works on a lot of levels. And there are plenty of people out there who are using as opportunity to smear the Pitt/Jolie couple. And like you say, Angelina probably would have had this as a major headline even if she had kept quiet about it. In a society where clinic personnel can be paid hundreds of thousands of dollars for cell phone photos of stars, it is hard to keep anything off the public's radar.