• Just need to talk about this to someone without freaking anyone out

    Asked by Jalemans on Saturday, July 12, 2014

    Just need to talk about this to someone without freaking anyone out

    I went to regular MD for a follow-up today after some issues this week with possible blood clots. All is well, but our conversation was quite sobering. He commented about how the chemo has no studies showing it works for my situation & did I know this? (I did). He asked me if I had asked the oncologist how long I would have if the chemo didn't work & stated that I was a straightforward person and that he felt I would want to know this.

    He is correct, but I guess I hadn't quite gotten to that point yet. I knew my odds weren't great, but I guess I hadn't come to the point of being ready to ask how long. I had asked about odds, but not how long if I don't make the odds.

    I am not really upset or anything, just at a new level of realization. I don't think I will ask that question yet.

    19 Answers from the Community

    19 answers
    • lilymadeline's Avatar
      lilymadeline

      For gosh sake, you are stage 1! I was diagnosed with a very aggressive chemo resistant uterine cancer myself ( clear cell ) about 3 years ago, they did surgery and chemo just to hopefully kill off any stray cells that had escaped surgery. And I am followed up closely, very closely because I have stage IV breast cancer as well...but my point is that I am doing fine. Please have hope! And get a second opinion! Get a third opinion! Do your research and go to the best cancer center with the top oncologist that you can find, there are always trials going on and many of them have great success for patients. Also if it is available for your uterine cancer, have a DNA genetic test done for targeted therapy, those are becoming available now for cancers, they are coming up with them little by little for each specific cancer and there are specialized labs throughout the country working on it. Talk to your oncologist and find out if they are doing them for your type of cancer now. That will show any genetic mutations, etc...that you might have and any specific drugs that you might respond to outside of the usual treatments. I don't quite understand it honestly, but they did it for my breast cancer and they found a new drug for me to try that isn't chemo and that has a 90% success rate. That probably has nothing to do with your situation, but I'm just saying that new things are coming up every day, hang in there! Take care of yourself with a healthy diet, daily exercise, and SLEEP! Getting enough sleep is just about the most important thing because our bodies heal while sleeping, it is hard to do with a cancer diagnosis so please speak to your doctors if you need help with that. Yes it is awful, and yes it is hard, but long term survival is an extremely real possibility as well even with an aggressive and chemo resistant cancer! Good luck and God bless!

      about 5 years ago
    • HOBO's Avatar
      HOBO

      Jalemans,

      Sorry your doc was so blunt. I have wonderful surgeon that does not lie but she makes you believe WE are a team and WE will fight the fight. She prefers to take the high road and that we will cross that road together when or if we must. This surgeon is also warm and wonderful. She gives great hugs and she has seen me through some very rough times. I was stage three and did well with the surgery but chemo almost killed me. The nerve damage was so bad I ended up in a wheelchair for about six weeks. I had to stop chemo and then do radiation. This doctor has stood by me. I can email her anytime even if I am just having a bad day. I can't say I was so lucky with my first medical onc, but I do have a good one now. My treatment recovery has been slow and some days I am still not sure I will make it. I finished treatment the end of November and I am still plagued by side effects. But, I am alive and I have not walked this path alone. Give yourself some time. Some days are easier than others.

      Jane

      about 5 years ago
    • kalindria's Avatar
      kalindria

      LilyMadeline and Jane gave you some good advice. My cancer was stage IV and not one of my doctors said anything about dying or "time left." I say that unless you brought this up, it is not helpful for the doctor to broach the subject.

      Might be time to consider a different regular MD. I changed mine last month because my original Primary Care Physician (PCP) missed my ovarian cancer diagnosis and I saw her nearly every other week for five months trying to figure out what was wrong with me. In the end it was my OB/GYN who figured it out IN ONE VISIT! I was blunt with my new PCP and told him why I changed docs and I'd change him out too if he got lazy or wasn't moving my health care forward.

      In other news, I was stage IV. You know, as bad as it gets. With ovarian cancer which is aggressive and my odds (if you look online which you shouldn't) were bad. Really bad. But the chemo knocked it out and I have been cancer clear on my scans since January. I'm still doing chemo to kill anything left but I'm still here and I feel pretty good.

      No one knows what your lifespan will be. I could get hit by a bus tomorrow or live to be 100. We do know that no one gets out of here alive. But for your doctor to be so callous is not good patient care and a horrible bedside manner. If you have the kind of relationship where you can talk to him, please let him know. He may think he's helping. After all, docs are only human... and maybe he can learn and improve. Does he know you well enough to know you're a straightforward person? If he's right and you are, be straightforward with him about how this affected you - because it clearly has.

      I wish you strength and send many hugs. This is a tough battle and sometimes people who should be helping make it rougher for us. You'll get through this.

      about 5 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Every one of us has such different needs from our doctors---I saw my oncologist this week, and I've seriously been thinking about changing doctors because he WON'T give me information on my percentages and how long I've got. He acts optimistic, but I'm Stage IV. No one can really predict the future, but I'd like to have an idea, so I could be sure I've organized things for my daughter, etc. I've been working on that lately.

      On the other hand, I told my daughter if I got "bad news" Tuesday, that I was going to start eating all the fattening things I love that aren't good for me and have a good ole time doing it!

      about 5 years ago
    • virg112012's Avatar
      virg112012

      As a regular MD he knows little to nothing about cancers and cancer treatment, he was out of line to tell you anything. I bet he had just read a little about your cancer. Your oncologists is the only one with the right info. but he is not God and even with the stats we are all very different and he can not predict precisely what your individual outcome will be. Be positive and live your life fully. No ones know how long they have, we just been given a jolt to appreciate more each day. God be with you.

      about 5 years ago
    • Jalemans' Avatar
      Jalemans

      Yeah, I am stage 1B, but level 3 leiomyosarcoma. Basically, I only had the one gigantic tumor, but my blood vessels had the cancer cells in them - a lot. If the chemo works, my odds improve quite a bit (60% per oncologist ). The is no evidence that the chemo will work, but it is worth a shot. There is a 70% chance of new tumor with this diagnosis & probably higher for me because the cancer is already in my blood. They can cut out new tumors, but they don't respond well to chemo or radiation. If I look up 5 year survival rates, they run from 15% to 50% & I am probably closer to the higher end since I only had the one tumor.

      The regular doctor is right that I would want to have the facts as they are on paper. This doesn't mean I give up hope or can't recognize that these are odds & not me personally. It does mean that I can prepare for the possibilities. The dr is correct about me, for example - when I discussed chemo with oncologist I told her, "I am a numbers sort of girl, what are the odds & how much will chemo improve them?"

      My discomfort is that this has all come so fast & while I am ready to recognize that this thing could kill me, I am not quite ready for those additional data. I will ask but I think I am going to wait until they redo the C125 & tell me if they think the chemo is having an effect. This will probably a few months down the line. I just need more time to absorb everything -- it has just been like 5 weeks since surgeon wrote "LEIOMYOSARCOMA" on my hospital wall and said, "This is what you have. From the information you were reading, this is what they are afraid of. I am so sorry." He had suspected cancer, so I had also. I did not expect THIS cancer! I did a lot of research, but I need more time.

      about 5 years ago
    • meyati's Avatar
      meyati

      Some doctors just want to impress us.They don't realize how stupid they sound. They are very sincere, and mean well-I guess.

      I got a new dermatologist. Radiation is not recommended for my incurable cancer. So my new new dermatologist is indignant that I had radiation, requested my radiation records, and so on.

      Nobody can undo anything right or wrong. Part of my nose is gone from surgery and I have sinus problems from surgery inside my nose. That can't be undone. I'm going into my 3rd year of remission because of radiation-why would I want to turn that back?

      I asked the dermatologist why couldn't he be happy that I'm in remission? I have my nose and eye. I can smile. I don't scare small children. I can eat normal food at a cafe or with friends and family. I can drive, I can shop. I can walk my dogs. I see a doctor every few months and we mostly smile at each other and joke.

      about 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      Sorry for you that this particular doctor worded his statement this way. I want to know all the facts, straight up, but I also want a doctor with a positive attitude and with the thinking that no matter the odds, or how bad the deal is, he thinks he can beat it. That's my attitude and I just want my team to share it. After all, if all of the medical team are walking around with their head down telling us we're not going to make it, and we have this X amount of time left, they have already given up. I don't want them giving up on me even after I give up!

      about 5 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Jalemans, it does take time. I was diagnosed a year and a half ago with a rare tumor that is a type of sarcoma called gastrointestinal stromal tumor (GIST). If you've already looked up your 5-year survival rate, I don't know if there's anything else to know except whether your medicine is working. Traditional chemo doesn't work on mine either, so I take a chemo pill called Gleevec, which is currently working. Best wishes with your treatment.

      about 5 years ago
    • barryboomer's Avatar
      barryboomer

      Information is Powerful and Needed.....even if We sometimes would like to crawl head first under the covers and deny, deny & deny.
      NOW...I believe many oncologists DON'T want to give up and continue giving Chemo even IF it probably won't work.....and that has to be discussed.
      Make sure you are doing the hard work at home with Plant Foods, Juicing and Anti Cancer Supplements. WE are the most important member of the TEAM and we should NEVER forget it. We live with this 24/7 and the Docs maybe 5 minutes and move on to the next patient.
      SO.......That's my take on it.
      Barry

      about 5 years ago
    • BoiseB's Avatar
      BoiseB

      Sounds like your PCP is related to my oncologist Dr. Doom. He is very fond of quoting dismal odds. He also loves to stamp expiration dates. But since my cancer is a no show for the final battle (supposed to be in September) He is somewhat baffled . Your answer to him should be "I know let's see what we can do about beating them"

      about 5 years ago
    • Judt1940's Avatar
      Judt1940

      I think your PCP over stepped. This falls with the oncologist and you. After my treatment and NED my PCP said he didn't know if I would make it (my age). You need encouragement from your PCP not a discussion where he can't lead you down the road to defeating and winning. You are showing a terrific attitude and need positive reinforcement From all around.

      about 5 years ago
    • meyati's Avatar
      meyati

      @ Boise-Dr. Doom is probably a cousin of my first oncologist-Dr. Sadist. He called me "Little Lady". I must say that he was upbeat while he told me that I'd look glamorous with an eye patch to cover the missing eye, and that I'd pretty much enjoy a year in an intensive care unit being tube fed-and having my brain exposed from all of the bone and tissue removal.

      What got me is that almost everyone thought that I was in an unreasonable snit-like a child that was told they couldn't have a candy bar or a new toy.

      For you about not getting unnecessary chemo--they do that. The surgery spreads the cancer then matures- more surgery that spreads more cancer, then chemo for at least 6 months-and every discipline agrees the chemo does nothing yet-maybe some day. Then Radiation-which might work. I went straight to radiation and skipped the eye patch and stuff.

      Some of us are experiments-which is different than being in a trial. I know that I'm an experiment.
      Lots of people said it wouldn't work at all-but I'm in my second year of remission. I had a scan Monday- and it's all good.

      about 5 years ago
    • barryboomer's Avatar
      barryboomer

      Dr. Doom and Dr.Sadist...
      VERY FUNNY STUFF.......
      I had a Doctor Bendova from Ploand.... who was a Proctologist......he really seemed to enjoy his work....lol
      LOL

      about 5 years ago
    • meyati's Avatar
      meyati

      Are you serious? The school district gives middle school and high school teachers a break, so we could do important things like eat the monthly birthday cake and sign cards for each other, pick up our endless notices from the school board, school administration, the current campus police notices. They'd ask us if we could sub in another class, so the individual school could stay in budget about subs. The school had 3,000 students. I just passed around a sign in sheet, then asked the students to wave a hand. Every so often, I'd have Ben Dover sign in. I fell for that every time. Barry-if all of the Ben Dovers are halfway like you-- our country will survive.

      about 5 years ago
    • barryboomer's Avatar
      barryboomer

      Thanks Meyati....never Bend OVA next to a Proctologist.

      about 5 years ago
    • GailB's Avatar
      GailB

      As patients we don't like to admit it but the Dr.'s have a hard job in determining what and what not to say to their patients. We as patients sometimes hear the same thing several times before we have that ah ha moment when we fully understand what we are being told. It appears from the posts that most of you prefer the Dr. to give you what I call the sugar coated truth. I myself prefer the cold hard facts, even if they are hard to deal with and accept. I prefer to prepare of the worst and be grateful and over joyed when it doesn't happen. We are not statics, we are individuals and no one has a crystal ball to know who will beat the odds. I bet most of you would say no one born with essentially 1/2 of a heart could survive(this was back in the days of no ultra sound and no clue there was anything wrong prior to his birth) but you would be wrong. My son had the right set of circumstance and he did live and for the most part he had a relatively normal live. Whenever he went to the cardiologist everyone in the building had to see for themselves this little boy that ran and played just like other kids and they were amazed by him. He fought to live and the Dr.'s fought to keep him alive, he didn't know he wasn't suppose to be alive. The Dr.'s made me understand within the first hour of his life he had no chance of living, so when he did survive the first few terrifying weeks I decided to make each day with him count and allow him to experience as much of life as he could. When he lost his fight to live, his heart was still going strong, it was the rest of his body that could handle the stress of 5 major surgeries in 41/2 yrs. My diagnosis is not the worst but it is not the best and my failure to have long periods of remission is not good, but my son is my inspiration for trying to live everyday to it's fullest. I do occasionally have a pity party for myself everyone is entitled to have them, but then you pick yourself up and brush yourself off and enjoy the life you have.

      about 5 years ago
    • Diansky's Avatar
      Diansky

      Jalemans, I wish you the best. I hope your PCP was trying to be the voice in your corner, even if his manner of delivery was not the best for you at this time. In my journey, I am finding my PCP to be a good resource for helping me in understanding my diagnosis, the tests and the odds. Sometimes it is at my PCP visit that previous info has sunk in, then I have questions. I have a great oncologist, too, but he is invested in a different place in the treatment. The onc's work hard to beat the cancer. Your PCP may have wanted to be sure you were not undergoing difficult procedures without a complete understanding of the facts. Sounds like you know what you are doing. Because your PCP cared, he wanted to be sure, I suspect. I hope what you are finding, albeit the hard way, is that you have a committed team and each person works for you from their strengths. Hang in there.

      about 5 years ago
    • cam32505's Avatar
      cam32505

      I had endometrial cancer as well, not the same type as you. I was stage IIIC when diagnosed. I had the works, surgery, chemo, and radiation. The rad onc scared me and said that this type of cancer spreads easily, so they were treating aggressively. I do believe that there are many cancers like this. My grade was a 1, so less aggressive. Yet, I still had thyroid cancer as the same time, but not diagnosed til 18 months after treatment for uterine cancer. My pcp found a lump in my neck before my D&C and wanted to send me for tests, but I told him I couldn't because I was already heading into treatment for possible uterine cancer. So, we both let the ball drop. But, I think I treated the more advanced cancer first, even if by accident. Just live your life. There's always the chance that some miracle treatment will come along by the time you need it. There are probably a lot of them in clinical trials right now.

      about 5 years ago

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