Breast Cancer mom says no to surgery and chemo

fizzdon52

Yes I'm sorry too, I didn't mean to offend anyone, only stated that I can't understand the lady the original poster was posting about. I think the word I used to describe her offended someone for which I am truly sorry. Anyway I got politely growled at by the Moderators and they explained the rules to me etc. I am really interested in your story pipers_dream, we have similar stats by the looks of it. I had surgery to remove my tumour though. I have tried to eat better and exercise but I am not very good at either unfortunately. I have given up smoking though and have never really drunk much alcohol. Do any of you believe that stress contributed towards your cancer? I think it may have contributed towards mine, but I've yet to learn how to turn stress off. I am also trying really hard to reduce sugar but it seems it is just about in everything.

Penzance

The Daily Mail is a tabloid: when they are not stalking celebrities, they target 'ordinary' people, paying them for the interview 'My life as a thalidomide person', 'sextuplet mom on benefits' etc.

I am not surprised this lady chose to go down the alternative route: health professionals in the UK tend to be incompetent and to have zero interpersonal skills ('empathy is trained out of you' as I heard from a former NHS staff). On top of it, you see a different person each time (including at the GP surgery or at the physio) so you can never build a relationship. So a lot of British people avoid using the NHS, and go for snake oil instead: Holland & Barrett (where this lady buys her supplements) is full of customers who were disappointed with the NHS, and who end up trying to treat themselves using the internet and advice from the helpful sales assistants. I am not really convinced by her argument that she needs to be able to look after her children: I'd love to avoid chemo, as I do have a f/t job to hold, but my gynaeco said I would probably not be able to forego it, and she advised me to gently prepare my employers to the idea that I might have to go on sickness leave for 6 months to 1 year. Joy... If only I could take driving lessons or professional qualifications during that time, it wouldn't be such a waste, but I'm afraid I'll be too unwell for that.

I think this lady must have found articles about DCIS being sometimes 'zero cancer' or 'precancer' and being overtreated, but hers is stage 2 already. I wish someone would convince her to seek a second opinion elsewhere, though that is diffficult to do in the UK. I wish her the very best, especially with 2 kids.

Scwilly

I'm british, though currently living in California. I have a number of british friends who have been dx with cancer, including BC, and have received excelent, up-to -the minute, timely and successful treatment within the NHS. So I would hate for anyone to think that 'a lot' of people in Britain need to go outside of conventional medicine because of lack of care from the NHS. I do know that many use complementary treatments alongside their mecical care.

My take on this lady is that she apprears to want to take full control of her life and has rejected medical advice. That is her prerogative and I wish her well, though I think/fear she is misguided.

TB90

Piper:  You and I were dx at the same time and I remember reading quite a bit about your experience.  We all differ in our beliefs whether about life, death, spirituality or a life well lived.  Only you can decide how that should look.  Through everything, you have been a class act.  You have an ability to portray your beliefs without condemning others and such a gentle way of explaining yourself without becoming defensive or angry.  I only hope the best for you and strive to be able to believe with your conviction without doubting or challenging others.  I am always amazed that faith is only applied to spirituality.  There are many cultures who also have faith in their healers and leaders.  Even though I do not share this faith, I do admire it in others, especially when they do not judge or condemn those that differ.  Take care of yourself and I hope that you do find a place that supports you as you deserve.  ((((hugs))))   

voraciousreader

http://www.theguardian.com/science/blog/2015/mar/0...

voraciousreader

I don't necessarily find Ms. Logan's decision troubling.. She is an adult and with adulthood comes the privilege of making one's own decisions. I am more troubled with sensationalized media which, IMHO, this article is an example. Recall a few months ago when a study was published in a respected medical journal informing us that less than half of Dr. Oz's episodes are based on evidence based medicine.

I recently had a very heated discussion with my 90 year old mother about the subject of nursing homes. She pointed a newspaper in my face that was about a patient who died in a Floridian nursing home due to negligence. I told my mother that the Sun Sentinel needs to publish articles like that so it can sell more papers. "Where are articles written about stubborn frail elderly people who drive their loved ones crazy and ill because their elderly loved ones refuse to give up driving and insist on living by themselves and won't allow help in the home" I would ask. Thankfully my mother isn't one of those types of people...but seriously, why don't the reporters report on those types of issues?

I've pretty much given up on the media. Articles like that one make me sad.

Deblc

I understand that surgery is the first line of defense, even if you don't do chemo. I would be afraid to not at least do surgery, because when the tumour grows, I gather it is pretty awful to deal with.

NineTwelve, I understand the doctor saying that at some point surgery would not be for curative intent, but I thought the protocol was to do surgery, no matter what, just from the physical complications of the tumour growing. Do you know why they wouldn't do surgery for that reason?

pipers_dream

Oh you guys are so sweet--I was having me a grand old temper tantrum last night--can we say stress? And I laid into you, though I must say that you did need to be reminded that there are those on here who've made some of the same choices as that lady did. I'll add to the British health care discussion too that I believe, and Europeans can correct me if I'm wrong, but I'm pretty sure they are more open to alternatives in general than we are in the states. It's not that they feel driven to it by their healthcare system so much as that they would probably try alt first, rather than as a last resort.

Fizzdon, I was never much of a drinker but I've always had a terrible sweet tooth and holistic doc told me I had a fatty liver. I was under a terrible amount of stress for about 5 years before my dx. Well, more if you count the RTW trip 7 years ago--it was fun but very stressful. Then a year after we got back my ex came out gay and then my g-ma died and mom a year later but that whole year was hell--we didn't realize that it was g-ma taking care of mom instead of the other way around and mom was completely helpless--at 75! She was also a grand hoarder with two big houses full of stuff that we had to do something with. We thought she had dementia but instead she was so full of cancer that two wks after the dx she was gone and we never even knew where it started but it was pretty sure she had brain mets. Add to that a pretty harsh case of AD/HD (me I mean), which adds a complete layer of stress over everything, always. I have figured out a way to deal with the worst of it--it's called EFT and you can find vids on youtube to show you how to do it. At first you won't believe that something so simple and so free could help that much but it really does. This past October I was crying every evening but now I just get a little grouchy.

And TB90, your message not only made my day but my entire week. I'm printing it out and putting it in my happy box. I think you do have faith in your healers--you have just chosen a different plan than I have. I had no faith in that, but that's me and comes from my experiences. We must choose what we think is best for us or we will not heal--of that I am sure. When I get more time on here I'd like to open a thread about the mind-body connection and how your faith in your healthcare plays into that, but right now time is short. Also if anyone knows of an old one that should be revived, feel free to dig it out.

Momine

Piper, as a European, I think I can comment on the alternative med thing a little.

In the Danish system you can get the public health system to pay for a number of alternative healing modalities, like acupuncture, reflexology and other such. Greeks have a real thing for homeopathy, and its use is widespread here.

However, I think it would be very misleading to conclude from this that Euros "try alt first." My strong impression is that people "try alt first" for minor things, like back pain, bothersome headaches and the like. In the case of serious disease, like cancer, first-line defense is conventional treatment, although the Greek will typically take homeopathy as well, the Dane will exercise through chemo etc., i.e. each patient will add the complimentary healing modes appropriate to his culture.

Heidihill

I agree with Momine from my perch here in Europe. All the people I know personally who have gotten cancer here tried conventional first. I have read about some who do alternative first, which mostly means mistletoe therapy. Many people pay additional insurance premiums for alternative therapies. In Germany I think mistletoe therapy is more widespread. There are a number of alternative clinics offering quite a range of therapies, including conventional chemo mixed withh homeopathy, hyperthermia, blood oxygenation, bloodletting, shower therapy, art therapy, conversation therapy, organic vegeterian diet, exercise, purified water, clean mountain air, no artificial electromagnetic fields, what-have-you. Sort of like intense medically-supervised wellness.

fizzdon52

I'm a Kiwi (New Zealander) and I lived in the States for 3 1/2 years. Loved my time in the States and am very fond of Americans. I have also traveled around Europe. New Zealand is part of the British Empire and our Health System is very similar to theirs, also similar to Canada and our close neighbours Australia. Our medical is free, although some of us do have medical insurance, although it's not really necessary. I don't think the English choose alternative first either. Not sure about other Europeans I think we are all basically the same, that there are pockets of people in most countries that try alternative treatments. I firmly believe that my cancer may have come about due to terrible stress I suffered over the past 7 years. Marriage breakup, son becoming very ill with Lupus and just every day life. I am one of those worriers who always think the glass if half empty instead of half full. I know I should be positive but it's impossible.

pipers_dream

I think I'd better clarify b/c as usual I left out part of what I was thinking. Yes, I meant that Europeans, and probably the rest of the world too, is more likely to reach for alternatives for minor ailments--I didn't mean cancer. Sorry I left that out b/c there is a big difference of course.

I do wish we Americans were a lot more sensible about our health care system too, but we keep getting this terrible propaganda about how horrible socialized health care is and how you have to wait 3 years for an aspirin. Also, they charge us about 5-10x more for meds. Fortunately they did bring in Obamacare and it's not perfect but it's a start and now I'm very afraid that the next administration will dismantle it. Yes, we're great people here for the most part but we are too easily confused by all the political rhetoric. I pretty much stay away from the news these days--too negative.

Scwilly

Piper - from my experience there is a lot more 'additional' healthcare here in the states. That is - what is purchased outside of the usual medical system. Just comparing whats on the shelves in a chemist (what a drug store is in the UK, for example Boots, to whats in a typical drug store here - I fell there is a lot more remedies and vitamins. I am a great believer in you are what you eat - but I'm not sure I want to use additional supplements. I am though taking a multi-vitamin now as my Vit D levels were low. Its for the over 50's so I do feel a little mixed to be in this category! lol

Thank you for opposing the propaganda and fear about socialized healthcare. No system is perfect - but at least if healthcare is 'free at the point of delivery' (except some small charges) then you will not denied access because you cannot afford it. I cannot understand why healthcare is linked to an employer. Isnt it better that your healthcare decision are made by people who are responsible to the people and not to a 'for profit' company. The UK spends about 1/2 of what is spent in the US - I wish the UK could spend more and healthcare costs here were not so high as to be unaffordable for some - despite having insurance.

Sorry to get on my high horse. I have infact worked within the NHS as a Performance Manager (looking at data and metrics used to help improve healthcare provided by the NHS) I learnt a lot of what was happening within he NHS to try to improve things. Coming to american healthcare was a massive shock and not a pleasant experience. I am so happy to be with Kaiser which is much more like the NHS (although I do know not everyone is happy with this provider)

Back to the point of this thread - everyone is entitled to make their own decisions regarding to what they do for their own health and I hope every one has the means and opportunity to be able to do so. I wish you all good health and recovery from this horrible desease.

labelle

I read the article, and like VR, feel this woman is an adult and entitled to make her own decisions and for me too, the biggest problem is the tone of this article, the sensationalized type of media reporting it exemplifies. Blah!

As to her treatment choices, sounds to me like she's weighed her options and made a choice she's comfortable with. It's not like chemo and surgery don't come with any risks or even guarantee a cure for BC. I often feel the choices offered to us by conventional treatment are limited to bad, really bad and awful.

Of course maybe I'm just cranky because I've currently got big hole in my breast (right behind my lumpectomy scar) courtesy of radiation and a surgical seroma gone bad which required emergency surgery due to infection. Traditional medicine isn't always all that great.

katcar0001

Wow, Labelle, I'd be cranky too. I am sorry for what you are going through with the radiation/seroma/infection. It sounds awful. Did you have to discontinue radiation or were you able to finish? I hope you heal quickly.

Momine

Piper and others, I agree about the US health care system. I currently have my daughter here and her English boyfriend. I told them about my experience when I gave birth in the US (to said daughter) and they were completely horrified.

Labelle, I am so sorry you are dealing with that. One thing I really like about Greek doctors is that they are meticulous about avoiding infections. When I told one of them that I got a massive internal infection after C-section surgery (in the US), his eyes almost fell out of his head, he was that aghast.

labelle

I did finish RADs, but I believe if my RO hadn't been in incompetent prick he would have stopped them due to the amount of skin damage (blisters, open running sores, easy pickings for a bacterial infection) and by the time we got to the boosts, the major swelling and a big hot spot on my breast. He "examined" me weekly-that is didn't even look at my breast-maybe if he'd actually examined me he would have been a bit concerned about that seroma. I saw him on a Tuesday (weekly follow up after my last treatement) and by Saturday a.m. I was in the ER at Vanderbilt, by 2 p.m. in surgery with a regular (not breast) surgeon because on a Sat, you get what you get, and since I obviously had an infection and was running a fever, it was decided there was no time to waste.

That was Valentine's day-we've had better. The 2 inch incision was left open to drain (with a hole under it 2 x 5 cm initially, it is getting smaller) and my husband packs it twice a day with medical packing gauze. The wound care nurse I'm now seeing weekly thinks it will take another 6-8 weeks to heal, hopefully from "the bottom up" but she says I may end up with a perm hole (big or small, she doesn't know) in my breast.

My husband makes jokes about the possibility of a second career for me as a gem smuggler-I might divorce him, LOL.

And of course since I had RADs any possible plastic surgery to fix the damage is likely to be problematic. And my OC wonders why I'm passing on Tamoxifen. Maybe because everything else they've told me I should have done, and I"ve agreed to do has been a disaster.

I certainly understand why someone might hesitate before seeking traditional treatment and/or seek out a way to avoid it.

Momine

Labelle, that is horrible. My rad doc was there every single day for my treatment to keep an eye on how things were going. I am glad that you and your husband are able to laugh about it though. Laughing helps.

katcar0001

Labelle, Your ordeal sounds like absolute hell. I cannot believe your RO didn't stop things sooner. And Murphy's law that the infection occurred on the weekend. I know it's hard to convey feelings in writing sometimes (at least for me it is), but you seem to be handling it so well. I pray you do not end up with a permanent hole. I would look into fat grafting--that may be the least invasive way of fixing it. Of course, I am assuming that by "hole" you mean a divot but the skin would be closed?! Was there necrotic tissue? If so, then hyperbaric chamber treatments may help that.

I certainly understand your mistrust of the medical treatments at this point. Talk about slash/burn. I wish you a speedy recovery!

ICanDoThis

Labelle -- I had exactly the same thing -- it took about 3 months for the little sucker to heal. I must admit, I was incredibly grateful to have married a man who was willing to pack my boob for 3 months.
It was the third infection  in that seroma, and I always had the same set of symptoms -- tingling, pain, redness -- that all my oncologists ignored, although somebody would eventually give me a round or two of antibiotics to shut me up. My RO, when I got this third infection, actually said, well, maybe we should start paying attention to you when you get these symptoms (I think it was a joke). And the fourth time I got the same infection, they did. This time, they put me on an antibiotic right away, and it stopped.
Now, I am 7 years out. I have a bit of a divot, but I am fine. I did 2.5 yrs of tamoxifen, but refused AIs (I am osteoporotic).
Good luck! 

December

labelle... im so sorry for your suffering. ..my prayers for you and your family. I've just been dx with ilc. I'm in knoxville. You mentioned Vanderbilt. I've always thought that was the best of best around tennessee. .. i would hope you could get better options there. Stay strong

labelle

Actually the Breast Center at Vanderbilt is very good, but I had my radiation treatment done locally. I didn't want to drive 90 miles to and from Nashville everyday for the RADS and the breast center doctors at both UT and Vanderbilt said that it would be fine to have my RADS closer to home, but when things went bad, it was off to Vanderbilt's ER, not the local one!

Unfortunately, it was a Saturday, so............ Anyway, the wound care nurse at Vanderbilt is very helpful, but the damage has already been done. Eventually, I'll probably see a plastic surgeon at Vanderbilt (if I decide I want to try to fix it-more surgery in not high on my list of things to do in the near future). My OC is at Vanderbilt and do think they are probably some of the best we have around here, although I did have my lumpectomy surgery done at UT in Knoxville- unfortunately as of 1.1.15 UT and my original surgeon are no longer in my insurance network.

bluepearl

One is allowed their own opinions but not their own facts. There is NO clinical evidence published in reliable scientific journals that any alternative treatment cures or properly treats any cancer. People can and do choose to go alternative, as my friend did, but please.....do not use your good luck to advise others to do the same...even if through an anecdotal story. It could result in someone's unnecessary death. So, I wish this poor lady a lot of luck.

NineTwelve

It's a little late, but someone asked why my conventional BC treatment would not start with surgery.

It's because my cancer was discovered at stage IV, after it had spread. Removing my primary tumor will not cure me, or give me any more time, statistically speaking, because I have tumors on my bone and lung. So the protocol is to save surgery, radiation, and chemo for later, and only for palliative purposes. I'm just on Tamoxifen now, and it seems to be working - my tumors have shrunk. (Knock on wood.)

I have to say, I always feel ambivalent at hearing that someone with stage II, like this woman, would refuse the treatments that could cure her, when I have no hope for a cure.

But I feel sympathy for her, too. Because chemo and surgery and radiation can be a bitch. And that cure they offer is only 70% certain.

pipers_dream

bluepearl, I'm guessing that folks who choose alternative do it because that's the way they're made and those who choose conventional do it for the same reason. We have to choose the tx we can be confident with, if there's any such thing as confidence when you're sitting there with a cancer dx. I think it is wrong to tell someone who's been successful with alt to shut up about it and not tell anyone. We all need to hear all sides of the story and we are all responsible for our own choices.

NineTwelve, I wish you luck on your tx and hope it keeps on shrinking.

Hopeful82014

Nine twelve, your last couple of paragraphs really resonated. I understand her reluctance to do chemo and radiation, even surgery. I don't understand her refusal to consider tamoxifen (I think I read somewhere that she's ER+), etc. Nor do I understand why she let it go for so long before seeking medical advice.

What I do have trouble with is A) that her reasoning is so flimsy and that She's putting an awful lot of info out there that's simply false and there WILL be people who will believe her, to their detriment.

labelle

Hmmm, I understand the refusing Tamoxifen part just fine-I can't make myself fill the script, LOL- but for me anyway the surgery part was an easy decision. RADS, less so but I did them. Of course, I'm pretty sure I'm simply treatmented out at this point! No more.

Whereas the woman in this article said "no" to it all from the get-go. Maybe she was the smart one! And it might work. People have unexplained (by the medical community) remissions everyday. Which reminds me, I recently read Radical Remission: Surviving Cancer Against All Odds by Kelly Turner. It was really inspiring,hopeful and very interesting -can't recommend it enough.

All of us are different, have different fears and beliefs about out BC and health care in general but kayb is so right, we need to respect the choices of others.

Deblc

I hope they follow up and also report how she is doing as time goes on. Often times you hear about people promoting alt therapy in the media,but never hear what their outcome is.

leggo

" And that cure they offer is only 70% certain". Where did this statistic come from??? I must have misunderstood the post or something.

Momine

Leggo, I think that NineTwelve means that, on average, 30% of BC patients relapse eventually (although recent stats suggest that number is actually going down, yay!). Typically, in Cancerland, "cure" means that you live 5 years past DX without a recurrence. As we all know, in the case of breast cancer, 5 year survival is no guarantee of longterm survival and does not mean you are in the clear. So, it is a pretty fair statement to say that any doctor referring to treatment as a "cure" is actually talking about a 70% (or perhaps higher now) chance of a cure. As far as I am concerned, we only have this beat if we manage to die of something else that is not related to cancer or its treatment.

As an aside, even 70% is an improvement for me over no treatment, because the cancer had already progressed rather far, stopping just short of stage IV. I confess that I get slightly irritated when I see someone who had stage 1 cancer crowing about how well if worked out to "refuse" chemo and/or tamox and rely instead on broccoli, artemisia, aspirin or whatever. Chances of longterm remission are vastly better in stage 1 than in stage 3, and the added survival benefit of chemo and/or tamox would be minuscule or even negative for most stage 1 patients.