• What one piece of advice did you gain from this site vs. Your doctor?

    Asked by cllinda on Saturday, February 10, 2018

    What one piece of advice did you gain from this site vs. Your doctor?

    The reason I asked this is because of this site talking about ports. My doctor never mentioned it and I would not have known if it wasn't for this site. Once I asked for it, he agreed to let me have one. But I had to ask for it. So I was wondering what other people have learned about here.

    29 Answers from the Community

    29 answers
    • GregP_WN's Avatar
      GregP_WN

      Thanks for asking this Cllinda, I can imagine there will be several things. I wasn't told about the dental issues before having radiation to the mouth/neck/throat. Which in turn led to me losing all my teeth. Had I of known prior to the radiation, I could have taken some precautions.

      6 months ago
    • Jalemans' Avatar
      Jalemans

      I didn’t know about Claritin helping with neulasta bone pain until I was told here for one thing. I also only met 1 person with my dx prior to this site & that girl was dying. It is helpful to know that there are others who have survived longer than me so far.

      6 months ago
    • geekling's Avatar
      geekling

      Ditto GregP_WN except I only need 3 or 4 so far and am still wanting to keep and fix the infrastructure of what is left of the remainder of my choppers.

      I learned on this site that I wasnt alone in being ignored instead of diagnosed.

      For better or worse, that seems important.

      6 months ago
    • barryboomer's Avatar
      barryboomer

      Many Docs either don't care or don't know or are incompetent.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      If our doctors are good, I think they tell us the most important things, and things they forget to tell us are probably optional, and we should look over it. Cilinda, in the case of a port, maybe he doesn't like their possible complications (infection, clots, etc.) and waits to see if it's needed.

      Nobody warned me about damage to teeth with radiation, and mine are in bad shape now. Another thing nobody has mentioned to me is heart damage, but I would've still chosen radiation to stay alive.

      Unfortunately, the remedy for us is to attend support group meetings and/or participate in WhatNext to be sure we are informed.

      6 months ago
    • beachbum5817's Avatar
      beachbum5817

      I also was never told that radiation might cause heart damage. I was told that Herceptin could cause it, but so far so good. I also never knew that so many people get second opinions. It never occurred to me. I just wanted the cancer out of my body. I was never told that some of the side-effects could be permanent. I doubt that it would have changed anything that I did, but it would have been nice to have been forewarned. At least WhatNext has given me suggestions to try that might help.

      6 months ago
    • msesq's Avatar
      msesq

      I didn’t know you could get mouth thrush or that Magic Mouthwash could help. The week after my first chemo was awful because my mouth felt like sandpaper. I too had no idea about Claritin for Neulasta and spent the first dose curled in a fetal position too much in pain to cry or even talk

      6 months ago
    • HardyGirl's Avatar
      HardyGirl

      I learned to not just take the doctor's word as the word of the gospel. Question them and get the why's answered. I ask questions until I'm happy. I used to just say OK, and go with it.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      That's why you should call your doctor if you have a new symptom. Even if other people don't have the symptom, you could have an allergy and actually die.

      Regarding heart problems caused from radiation:
      I had radiation in 2002, and things might have advanced since then, but the radiation oncologist told me the machines would radiate me from the right and left sides ACROSS my breast, rather than from the front. This was supposed to PREVENT radiation on my heart. Has anyone else been told that or heard of it?

      6 months ago
    • Carool's Avatar
      Carool

      I learned, among many other things, that my doctors were thorough in what they told me about possible side effects of breast radiation to my left breast. I also learned that if I ever need chemo again, I should drink lots of water during that period (something my oncologist or onco nurse hadn't told me at the time). I learned that this site is an excellent source of support and info.

      6 months ago
    • JustForToday's Avatar
      JustForToday

      BarbarainBham you asked if anyone else has been told they would be radiated ACROSS the breast rather than the front. I just had my initial consultation with my radiation oncologist last week. She told me exactly that in almost those exact words. I am getting the same information today that you got in 2002. I will start my radiation in March.

      6 months ago
    • junie1's Avatar
      junie1

      the first time I had cancer in 1994, I didn't know the questions to ask, or didn't think to ask questions, but either way,, would have loved to have had a site like this to go to. My doctors were great,, but I didn't know about side effects of chemo or radiation at that time. I also lost my teeth,, and know have dentures,, (which by the way aren't the best- had I known info i'd had implants done in 1996,) now my gums will not accommodate implants, ok,, other side effects were tolerable.
      in 2014 when I was DX again,,, I did ask the questions,, and did find this site and it has been helpful.. knowing other people and their issues,, In 1994 I didn't get a port for chemo,, but in 2014 they put one in.
      I agree with all who say over and over,, that we need to be aware of our own bodies,, and ask questions to our doctors.. If we don't let them know what's going on,, they can't help us..
      Good Luck to all,, and thanks for this site,, and I'm glad I found it and to all on here!!

      6 months ago
    • fluteplayer's Avatar
      fluteplayer

      I found out that so many are going through the same thing and it somhow helps to know your not alone.They have given me so many tips with rhis chemo brain ,can't remember them all.Just so thankfull I found this site

      6 months ago
    • akwendi's Avatar
      akwendi

      from the doctor you get the clinical side. From here you get the "real" side. Anytime I got information from here I always checked with my doctor to make sure for my case it was fine for me. Some of the things I got from here like the Claritin for the Neulasta my doctor said to go ahead and try...that it couldn't hurt. But there were other things that I got here like the black cohosh for hot flashes that my doctor said not to take due to my type of cancer. So check with your doctor before adding anything.

      6 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @akwendi, thank you for your post and reminder that the information here is not gospel or doctor-vetted. It is people's opinions and personal experiences. Everyone's personal experience is different ... and our diseases are the same, but not. No one should follow the advice given on WhatNext without first running it by their doctors.

      I agree with Carool ...this site is a wonderful place for support and info (that should be vetted by a doctor).

      6 months ago
    • hikerchick's Avatar
      hikerchick

      Self-advocate, get educated and got to medical records at your doctor's group and get copies of lab results and ask questions if you need to. They never told me I had multiple points of origin. In my mind, that was the deciding factor for double mastectomy, because ALL the tissue was suspect. It didn't matter that it was early stage, or that I had ample tissue to just do lumpectomies. The medical records gave me the facts, ALL the facts, which my doctor hadn't. Then I was able to make an educated decision. I'm 7 years cancer-free and it was the right decision to remove everything.

      6 months ago
    • MariePierre's Avatar
      MariePierre

      I would had waited a full year after radiation to have my breast reconstruction surgery. I believe the surgery would have been more successful and the result less problematic. I have one lower soft breast and one higher hard one. Now, I m experiencing burning of the skin on my neck and across my chest.
      I learn more from the articles and websites posted here. Doctors are not teachers.

      6 months ago
    • geekling's Avatar
      geekling

      @akwendi. None of us ought to be telling each other what to do. All we can say is what is usually of help and/or what works for ourselves; our friends.

      I would hazard a guess that your doctor is simply unfamiliar with black cohosh or is confusing it with blue cohosh.

      I can say this easily because the studies simply dont show it to be true BUT there are much simpler ways to ease hot flashes and not be afeared. Doctors are not nutritionists nor herbalists.

      https://www.mskcc.org/cancer-care/integrative-medicine/herbs/black-cohosh

      Sweet potatoes act like a pseudo estrogen. The Chinese use it in powdered form as wild mountain yam. I never had hot flashes. I never had breast cancer either and I am glad of it too.

      Each of us must self decide what we are willing to risk in our quest for recovered fine health.

      Best wishes

      6 months ago
    • geekling's Avatar
      geekling

      P. S. I wouldnt take Claritin nor Neulesta nor tylenol either.

      To each his or her own

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      akwendi, I'm glad you asked your doctor before taking any new drugs or supplements. Just guessing, but the obvious difference between your doctor's opinion on the Claritin and the black cohosh is that Claritin is FDA approved.

      By the time they've gone through their run-through, MOST of the negatives are apparent, so they approve it for the public. (I recall some prescription weight-loss pills that were proved to cause heart attacks in some cases. Because of that, I prefer to wait till new drugs are on the market awhile before I try them.)

      Remember studies not done by the government are suspect, due to commercial bias.

      6 months ago
    • geekling's Avatar
      geekling

      The difference, @BarbarainBham is that Claritin is a manufactured and patentable mix of chemicals while black cohosh is a natural plant substance, to date not patentable, and brought to us directly by That Which Created Everything.

      Plants have been used by our species for thousands upon thousands of years. The FDA came around in the early 1900s.

      Please consider re-evaluating your ideas about commercial bias.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Geekling, I said "the obvious difference between the doctor"s opinion on Claritin and black cohosh". Obviously there are many other differences.

      How do you suggest we evaluate commercial bias possibilities? I only said they are "suspect."

      I wouldn't take Tylenol either, due to possibility of liver damage. I frequently take Claritin for allergies only.

      6 months ago
    • geekling's Avatar
      geekling

      If you are asking me to suggest something for you to do, I cant. I can only tell you what I do or have done.

      First I learned a little about history. I learned that prior to the corporate friendly FDA there was a Bureau of Chemistry which was a public servant and unconcerned with corporate profit over the good health of the citizenry. The dude who ran the Bureau was so beyond reproach in his service and so successful at beating back dangerous corporate shortcuts which he proved were harmful that the corporations fought back in the only way they can.

      They peeled a bit off their profit and 'encouraged' Congress to turn away from the Bureau when Mr. Wiley, the head of the Bureau, took a new corporate practice all the way to the Supreme Court and won an estoppel.

      Today, however, once the Bureau was gotten out of the way and replaced, it is common for manufacturers to bleach (yep, with chlorine) flour instead of letting it whiten slowly in the sun.

      The lady and team which drew up the first government food pyramid were shocked to the core at the ability of industry to make instant, uninformed, unhealthful but corporately profitable changes to what Ms. Light and her crew had worked on for so long and with such diligence.

      Once your idea of protective governance is shattered, you can begin to look at what you are told more clearly and start to make informed choices quite differently.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Geekling, when I said "government" studies, I was talking about the NIH and any other Federal organizations that do unbiased studies for efficacy on disease before the FDA ever starts the approval process. I've worked for research physicians and am familiar with what NIH expects of their studies to be non-biased. (many blind and double-blind)

      6 months ago
    • geekling's Avatar
      geekling

      @BarbarainBham. I dont know how to get through to you.

      There are no unbiased studies in the US or maybe very rare ones.

      We have gotten to a point where companies make policy.

      Once a desired result is obtained, end of study.

      JAMA revisited and tossed nearly half of its published studies just a few years ago. Researchers are not disclosing or are being funded in round about ways to hide the bias.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Geekling, are you familiar with the Methodology of NIH STUDIES, blind and double-blind? They fund millions of dollars every year, probably billions. You are talking about other studies.

      In addition, more than one study is required to prove something, so to stop a study before the planned date would be pointless.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Geekling, you said "Once your idea of protective governance is shattered, you can begin to look at what you are told more clearly and start to make informed choices quite differently."

      If you were less presumptuous and condescending, you might open your mind towards positive ideas.

      Your opinions are yours only, and you know nothing about me. STOP.

      6 months ago
    • LungCAbgone's Avatar
      LungCAbgone

      I was told 5 years ago to "Get my affairs in order now". After over 12 treatments (total pneumenectomy, rad.,chemo,immun.targ. and numerous drug trials, I am still here. I was told just recently I have about 6 months (by a different onc.) I understand that they need to tell you this so you get your Living Will, etc. in place. If they told you a year, you might delay getting paper work signed for your family, etc, but they have no idea how long you get to be here. We all know the side effects are probably the hardest to manage. I would suggest getting friendly with your Onc. nurse. If she is over 50, great. She knows Old School remedies, such as (of course) the Claritin (not the D) also Glutamine (bone pain), Boudreaux Butt Paste (yes, you may need it). I ask every person who comes near me with the oximeter to wipe it clean BEFORE putting it on my finger. Amazing how they assume once it's wiped off in the morning it's good to go all day. All of us can not afford to get a virus. Please get a 2nd and even a 3rd opinion. Get copies of all scans (CD's and reports. If you have a radiologist who isn't diligent about dictating a thorough report you can ask (and sometimes have to pay about $200) to have another radiologist read the CD with a better set of eyes. My nurse and I are compiling a side effect list to hand out to patients. Hopefully this helps, but as always, check with Doctors before doing anything. Wishing All of You the Very best.

      6 months ago
    • tsddawson's Avatar
      tsddawson

      IMPORTANT? B6 and B12 are very important during many chemo treatments. Took bigger doses towards end of chemo, still do. Nephropathy is common with chemo therapies, no one told me. Nerve damage I have cant be undone now, but at least I stopped it before becoming totally disabled. Worth asking your doctor if its OK for you during chemo(s). B17 not legal in US? I am a five year survivor/ brain, lung, stomach/ stage 4. I'm alive and living!

      3 months ago

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