Got to Wonder...

24242
24242 Member Posts: 1,398
edited March 2014 in Breast Cancer #1
It has been 9 years 7 months since I finally got the diagnosis of cancer that I had been dreading. After not being heard and taken seriously my cancer was left to spread. You would think after all the years of battling cancer that Doctor's would start to listen and learn more.
My best friend lost a mother to breast and bone cancer at the same time I battled my disease. We both had been ignored but I moved to another province and was taken seriously, she instead had many more months of fighting with doctors before her diagnosis was there. She died soon after.
My friend and I have supported each other most of our lives and since the death of her mother more and more. 7 years ago she had her own skin cancer diagnosis at stage 3 and was told to take this seriously since Malinoma is very serious something he thought she was taking very seriously.
For the last 2 years she has gone from doctor to doctor and specialist to specialist trying to get spots that are raised on her body. She is very full of frecles so doctors tend don't see ther urgency it seems. She finally went to a skin specialist in another town and was poo pooed again until she told him she has malinoma 7 years ago and has been trying to get these lumps addressed. Then he too finally took her seriously since she said she wasn't leaving till he took them off. After looking at them again he admitted they didn't look good and took one and biopsied the others. Can you imagine having to get to sleep every night knowing you have these areas that are being ignored?? I know all too well how that feels.
I sit here now wondering when Doctors are going to really start listening to their patients. I always say if you never look you will never find and diagnostic testing is the only way to catch cancer in its earliest stages. Year after year I hear these same stories and wonder when enough will be enough...
Love to all,
Tara

Comments

  • Susan956
    Susan956 Member Posts: 510
    #2
    Tara,

    I think from what you said you live in Canada... but some info on Malinoma and some advances. My Mom, who has had 5 spots of Melinoma over the last 3 years, found a specilist in at Duke (It is in N.C.) we live in S.C. who uses a new technique. They basically take digital photos and then compare them. In other words they take new pictures each 6 months. So far it has caught a number of the new spots and she has been successful so far in keep it to just a skin cancer problem. So don't know if your friend might could also find a Doctor who uses that technique as well.

    Susan
  • inkblot
    inkblot Member Posts: 698 Member
    #3
    I understand what you mean Tara. It is IMPERATIVE
    that we advocate for ourselves...especially when we feel at odds with a doctor's opinion. Or when that little voice inside tells us to do so.

    I know that it can sometimes be difficult in Canada...certain waiting lists and all for some things. Don't know what to tell her to do, but sure hoping Susan956's info will be helpful to your friend.

    I don't know very much about Melanoma. It's great that she has you for support though and in you has someone who understands how to navigate the medical system there.

    I'm a little over 5 years out now and I have seen so many changes in the medical approach. Small changes that are sorely needed, even though there's miles to go yet. While some of it stems from competition, it's still great for patients. Even so, here in the US, some areas are just not as progressive as others and not as, shall we say, "on the cutting edge". Just a fact of life with medicine everywhere it seems. I'm convinced that there is not now and never will be anything resembling "uniformity of care". All the more reason we get as many opinions as we feel we need and learn all that we can for ourselves.

    Good luck to your friend and congrats on pushing
    an amazing 10 YEAR survivorship!

    Love, light and laughter,
    Ink
  • 24242
    24242 Member Posts: 1,398
    #4
    inkblot said:

    I understand what you mean Tara. It is IMPERATIVE
    that we advocate for ourselves...especially when we feel at odds with a doctor's opinion. Or when that little voice inside tells us to do so.

    I know that it can sometimes be difficult in Canada...certain waiting lists and all for some things. Don't know what to tell her to do, but sure hoping Susan956's info will be helpful to your friend.

    I don't know very much about Melanoma. It's great that she has you for support though and in you has someone who understands how to navigate the medical system there.

    I'm a little over 5 years out now and I have seen so many changes in the medical approach. Small changes that are sorely needed, even though there's miles to go yet. While some of it stems from competition, it's still great for patients. Even so, here in the US, some areas are just not as progressive as others and not as, shall we say, "on the cutting edge". Just a fact of life with medicine everywhere it seems. I'm convinced that there is not now and never will be anything resembling "uniformity of care". All the more reason we get as many opinions as we feel we need and learn all that we can for ourselves.

    Good luck to your friend and congrats on pushing
    an amazing 10 YEAR survivorship!

    Love, light and laughter,
    Ink

    Thanks for your thoughts,
    My friend has done allot of research and went into last appointment loaded for bear since she has been living with these spots for all that time. Funny she was told by doctor to get all spots looked at and taken care of immediately after her first bought. Then after that it has been a struggle getting them to even send her to specialist. Yes we know about the mapping but she hasn't been able to get sent to one probably cause there are only a few in the country.
    Funny, here in Canada we always thought these stories only happened in the States since our impression of your health system hasn't been grate. Now our governments provincial and federal are leading us to the same places. And What Happened to gut instincts and opened minds in the medical community. Allot of us do not follow the criteria set out by doctors for disease control. That doesn't mean we don't have cancer just like the next guy and that can only be found with the diagnostic tools at hand. I often think we are not getting the tests sometimes because of the cost to the system. They want to be sure before spending the money. Maybe that is why there is so much undetection going on. I am just grateful I moved away from my home province, I am convinced this is why I am still alive.
    Thanks for listening drives me crazy...
    Tara
  • jamilli
    jamilli Member Posts: 16
    #5
    I am also Canadian but now I live in Colorado. I have experience with both health systems and I work in health care. After I had my mastectomy, I went to four oncologists to get four opinions. I finally found the oncologist that I trusted. I phoned my insurance to find out how many opinions I could get. They told me I could get as many as I wanted!!! In Canada, I don't think it's much different with regard to how many opinions you can get. I also don't know of too many Canadians that have been stuck with a huge health bill. So, if you are not satisfied with your doctor, go find another one. I also know that in Canada this can involve some driving. So what, it's your life. I am driving to California to have my reconstruction. You know your enemy: unconcerned, unmotivated doctors. You are way ahead of the game. And finally when it comes to insurance companies (Canada included) if you don't ask, you don't get. You have to be your own patient advocate, you have to be loud and obnoxious. After I am through with all of my struggles, I would love to become a patient advocate and help people deal with the issues that you describe. It really is ridiculous that there are so many hurdles to get the care that we need.
    Love to you and your friend.
    Jamillli
  • mssue
    mssue Member Posts: 242
    #6
    Hi Tara,

    I just wanted to congratulate you on your upcoming Anniversary.Your Anniversary for surviving,living a truer more fulfilling life.Realizing and understanding the past and helping others on their journey, making it a little bit easier or bearable.Your contributions to this site have been tremendous and deeply appreciated by many,I know I'm not alone in saying so.

    It is heartbreaking to know what alot of people have to suffer through reguardless of where they live,maybe and hopefully things will be different and better for our children and grandchildren.....
    I am glad we have a place to go and share all of our trials, good or bad, as we journey through this .You always have my best wishes and prayers.Thank You Tara
    ((({HUGS})))
    Sue
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    Tara,
    It comes down to being our own advocates, sadly. My second PET scan showed no 'light up' of a breast lump I have had for 11 years, even tho the first one did. They were going to drop it, as a false positive. "Nope", I said...needle biopsy the thing...I am NOT going to die from breast cancer after successfully beating the beast with the rectal cancer.
    Sigh, turned out, to everyone's surprise, that it was stage II invasive breast cancer.

    Hugs, Kathi
  • kathydaly
    kathydaly Member Posts: 81
    #8
    Dear Tara--

    I like you was fighting for 3 yrs. w/my ob/gyn prior to getting the diagnosis I dreaded. He poo-pooed me, I was too young to have breast cancer, people don't have pain w/bc, that's why it kills ppl., I was fibrosystic, that's why so dont eat choclate or coffee, yadda-yadd. The pain was so bad I was clutching my breast and made breathless w/the intensity of it. My girlfriend and I decided I could go to his radiologist w/o his referral and did. If I had to pay out of pocket, so what. It was confirmed that day. My ob/gyn denied it had anything to do w/my previous pain complaints.

    It was throughout my whole breast and way up high into muscle. When the breast surgeon examined me it was coming out through my nipples.

    I was practically stage 4 if not.

    Canada I know has a lot of -- you must do it our way. If you go to a teaching hospital first or after, I wonder, can that make the wheels spin any quicker, they should have the most up to date equipment; plus their exposure is so much greater to the beast, perhaps they'd be more responsible in their listening an diagnostic skillls.

    Is any of your ins. capable of working in the U.S..
    The teaching hopitals are much more responsible here as opposed to the doctors here who are just jerks, and killing women at the same time.

    Most improtantly, I have learned to trust my gut.
    It's my body and my life, not theirs.
    My GIRLFRIEND saved my life, first and foremost.
    I would never have realized I could go to a radiologist on my own. so what if I had to pay out of pocket.
    That's why this forum is soo important, we are each others girlfriends.
    I wish they had to pay a price for their lack of capable doctoring.
    I did try to sue him yrs.later, and couldn't, no where in my chart had he mentioned my complaints of breast pain for the previous 3 yrs.

    There is no victory in my having been right, nor would there have been any satisfaction in gaining financial reimbursement for his mistakes, the only victory would be in their inability to kill more women.

    We all must trust our gut at a time when we are most vulnerable.
    If you don't like or trust your doctor--get a new one.
    If you don't like the facility you're getting treatment at--go to a new one.

    Interview your doctor's,about their schooling, placement at graduation,, how loong they've been practicing, have they published anything on bc, and that they have no malpractice suits pending, if they balk at your interest in their competence, RED FLAG. There is no reason they shouldn't answer these questions willing.

    After that whole problem w/my ob/gyn, I found out his wife had died of breast cancer! Very sad, no?

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