just starting!

braton1
braton1 Member Posts: 6
I am learning as I go along with all of this. One day I went in for a mammogram and the next like normal I am being called back for an ultrasound, then biopsy, sure enough the very beginning stages of ductal carcenoma. My Gyno set up an appt. with a surgeon where he sent me to a plastic surgeon. Had an MRI for the lumpectomy in the left and got called back the very next day to have more tests and another biopsy done. Over a week later went into the surgeons office and he tells me I have the "bad" cancer in the right and suggests a mastectomy. Had surgery double mastectomy and the 1st two lymphnodes removed had cancer so the surgeon took all of them, which weren't cancerous. Thank God! Mean while the plastic surgeon put in expanders. The pain is unbelievable and am told it is from the expanders. I notice something odd on the right side, it was a hole, so I go into the plastic surgeons he tries to fix it but by the next week the hole is twice the size. Had surgery again he removed the right expander and put another one in just didn't fill it up as much. Then I went to an Oncologist who explains men are tards and think all women want is big boobs, and she wished any reconstruction would be done after chemo. I have a dime size area that is like a dip not pretty and open but not a hole. My Oncol. Dr. is watching it and says more women end up doing chemo and having surgery to take out the expanders. I didn't understand why I was sent to the plastic surgeon before the Oncologist. I didn't need a port either, that was freaking me out alittle but the nurse insists I get one. They didn't tell me before I went in for the chemo that I should have drank alot of water, and no caffiene. So yes I didn't drink alot of water but caffeine before I went in and got poked a few times before someone else came and got the IV in.
Why do you have to ask everything? Why don't they offer any info? I was terrified of all the side effects I was waiting to happen right there in the office. I don't know what to expect! When you hair falls out is your scalp tingly or do feel anything at all? I am rambling now.. Sorry Thanks for any guidance.. Tonia

Comments

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I sure wish doctors wouldn't
    I sure wish doctors wouldn't refer to one type of cancer as 'bad' vs. another type...they're all bad. And yes, some docs don't volunteer a lot of info, others are better at it.

    But you've come to the right place for tons of information. There are many of us here who have gone through chemo and/or have similarities and we're happy to answer questions. You'll also find tons of general advice and recommendations for your chemo and side effects if you use the search box in the upper right of your screen. Just type in 'chemo' and you'll see many discussions about it. I would be more specific, but I don't know exactly what information you're looking for.

    I'm sorry no one told you about drinking water it is really critical to getting through chemo. I started hydrating 2 days before each infusion, and continued hydrating for 3 to 4 days after. I liked smart water icy cold, the electrolytes will help with additional hydration.

    As for losing your hair, yes your scalp will get tingly/itchy just before it starts falling out. That should be about day 15 of your treatments (day of treatment is considered day 1). The tingly/itchy feeling went away for me after all the hair was gone. Also so you don't have to ask, depending on your chemo, you might loose all the hair on your body...legs, arms, down there, eyebrows, eyelashes, etc.

    This should get you started, and I'm sure others will chime in with additional thoughts. I'm sorry you've had to find us, but we'll help wherever we can. Please come back to ask your questions and let us know how you're doing.

    Hugs,

    Linda
  • grams2jc
    grams2jc Member Posts: 756
    So sorry
    Sounds like you are having a really rough time. Seems like every one of us has a different story and doctors with a different thought on how to treat us. My surgeon did not want me to worry about expanders and reconstruction because he was sure I would need radiation and he didn't recommend the expanders before rads, he also wanted me to get the beast out of my body asap to save my life. I didn't argue at the time, the life was more important than the breast. Other docs have no problem with it and the ladies do just fine.
    There is no cookie cutter treatment, some have chemo and rads before surgery and some after, reconstruction starts at the time of surgery, years later or not at all. Some of us are blessed with a team of docs who cooperate with one another and medical faciliities with lots of support teams, others of us must figure it out on our own. I know that is absolutely no help to you at this time, but what will help is bringing your concerns to this board. These pink warriors can always give you some advice or encouragement, and you will know that you are never alone.

    Don't be afraid to ask questions until you get answers it's your body and your life.

    Hang in there and know that your pink sisters are with you,

    Jennifer
  • poplolly
    poplolly Member Posts: 346
    I will never forget the
    I will never forget the first sentence my oncologist said to me the first time I met her: "There are two kinds of bad cancers and you have one them." My mind went numb and then I heard her say there was a high percentage of recurrences with the type of cancer I had. Luckily, I had written down questions that had flooded me when I first got dx. That's really what you have to do. Plus, she talks so fast that I don't have time to process everything. I'd also suggest you have someone with you who can ask questions if that's possible. I elected not to have reconstruction but they were going to send me to see the plastic surgeon the same day I was told I had to have a mastectomy. I wasn't ready to make that decision. So, I kept a notebook and I searched sites like this to figure out all the questions I needed to ask, and then I would make the doctor slow down, and answer me while I checked off my questions. I'm glad to answer any qestions I can for you. I've had chemo and radiation. It did not hurt when my hair started to come out. I got my head shaved before it got too bad just to speed the process.

    JUdy
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    poplolly said:

    I will never forget the
    I will never forget the first sentence my oncologist said to me the first time I met her: "There are two kinds of bad cancers and you have one them." My mind went numb and then I heard her say there was a high percentage of recurrences with the type of cancer I had. Luckily, I had written down questions that had flooded me when I first got dx. That's really what you have to do. Plus, she talks so fast that I don't have time to process everything. I'd also suggest you have someone with you who can ask questions if that's possible. I elected not to have reconstruction but they were going to send me to see the plastic surgeon the same day I was told I had to have a mastectomy. I wasn't ready to make that decision. So, I kept a notebook and I searched sites like this to figure out all the questions I needed to ask, and then I would make the doctor slow down, and answer me while I checked off my questions. I'm glad to answer any qestions I can for you. I've had chemo and radiation. It did not hurt when my hair started to come out. I got my head shaved before it got too bad just to speed the process.

    JUdy

    Take a deep breath ... Now, scream! Okay ?
    As a 2010 survivor of chemo to reassure you that it's not that bad. While there is plenty to be scared about with any cancer diagnosis, try not to be scared -- and the more positive and relaxed you can be, the better all your surgery and treatments may go. Many knowledgeable people have been involved in helping determine the right treatment for each of us, because we are all different, and new treatments and studies are coming out regularly.

    My suggestion ...Call your Oncologist and see if he/she can get you into the office to go over the 'game plan'. Please take a friend, hubby, or family member -- as so much information and foreign jargon is talked about -- you really will end up getting only a small portion of what is being discussed. Also, a tape record comes in handy .. record the conversation, so you can use it as a reference. Notebook for taking notes .. and writing down all questions you may have -- plus you have concerns, please write them down and address them during your Oncology appointment.

    With all chemo therapy infused drugs .. there are side efforts, and many of us WARRIORS .. suffer from 1 or 2, while others suffer a great deal.

    I had taxotere and carboplatin, I did suffer with mouth and throat sores (Tom Natural toothpaste helped); the steroids and other meds helped with my nauseated before and during chemo .. after chemo infusions -- nausea plagued me for several days (everybody is different -- just my case, and my body) I did suffer with fatigue and bouts and constipation issues - please do not hesitate to call your Oncologist in attempts to find relief.

    Hydrate, rest, and hydrate some more. Small meals can often help with nausea. I also splashed / flavored my never ending water consumptions with crystal light, lemonade, cranberry juice or apple juice. Herbal tea worked in the evenings, for me. .. drinking plain water endlessly, got a little boring for me.

    Tissue expanders: Ugh! Feels like rocks, or hard deflated footballs, right? Sleep on your back .. and take ibuprofen as needed for pain. Frozen peas, corn or small ice packs wrapped in a kitchen towel can help with your TE inflammation. Ask your Plastic Surgeon for his suggestions, as well.

    Good luck .

    Strength, Courage and Hope.

    Vicki Sam
  • butterflylvr
    butterflylvr Member Posts: 944
    VickiSam said:

    Take a deep breath ... Now, scream! Okay ?
    As a 2010 survivor of chemo to reassure you that it's not that bad. While there is plenty to be scared about with any cancer diagnosis, try not to be scared -- and the more positive and relaxed you can be, the better all your surgery and treatments may go. Many knowledgeable people have been involved in helping determine the right treatment for each of us, because we are all different, and new treatments and studies are coming out regularly.

    My suggestion ...Call your Oncologist and see if he/she can get you into the office to go over the 'game plan'. Please take a friend, hubby, or family member -- as so much information and foreign jargon is talked about -- you really will end up getting only a small portion of what is being discussed. Also, a tape record comes in handy .. record the conversation, so you can use it as a reference. Notebook for taking notes .. and writing down all questions you may have -- plus you have concerns, please write them down and address them during your Oncology appointment.

    With all chemo therapy infused drugs .. there are side efforts, and many of us WARRIORS .. suffer from 1 or 2, while others suffer a great deal.

    I had taxotere and carboplatin, I did suffer with mouth and throat sores (Tom Natural toothpaste helped); the steroids and other meds helped with my nauseated before and during chemo .. after chemo infusions -- nausea plagued me for several days (everybody is different -- just my case, and my body) I did suffer with fatigue and bouts and constipation issues - please do not hesitate to call your Oncologist in attempts to find relief.

    Hydrate, rest, and hydrate some more. Small meals can often help with nausea. I also splashed / flavored my never ending water consumptions with crystal light, lemonade, cranberry juice or apple juice. Herbal tea worked in the evenings, for me. .. drinking plain water endlessly, got a little boring for me.

    Tissue expanders: Ugh! Feels like rocks, or hard deflated footballs, right? Sleep on your back .. and take ibuprofen as needed for pain. Frozen peas, corn or small ice packs wrapped in a kitchen towel can help with your TE inflammation. Ask your Plastic Surgeon for his suggestions, as well.

    Good luck .

    Strength, Courage and Hope.

    Vicki Sam

    First of all let me get the
    First of all let me get the {{{hug}}} out of the way. There that's better... now on with my story. My journey led me down the path of chemo first, then surgery double mastectomy with immediate reconstruction (tissue expanders). I was one of the lucky ones who didn't feel the chest pressure or pain. I also had to go back into surgery to remove a flap along my incision line that the blood was coagulating under. I was told that if I didn't do this that it would eventually form a hole, I guess maybe this is what happened to you. My surgeon was able to correct my incision and my tissue expander inflation was delayed by only a couple of weeks. My plastic surgeon also told me I had great skin, so I guess this helped.

    I just finished radiation this past week and my left breast is beat red like a lobster. Again... lucky me I don't have much pain and the tissue expander doesn't seem to be giving me any complications. They say radiation shrinks the skin and my expander seems to have survived the radiation treatments. It's funny how doctors can prescribe such different avenues of treatment depending on your cancer diagnosis and what part of the country you are from. I've found that out here that no two of us will be the same in our treatment for a cure.

    The others gave you some great sound advice, I just wanted to chime in and show some sisterly love...

    Hugs,
    Lorrie
  • mamolady
    mamolady Member Posts: 796 Member
    What the doctor says
    Tonia,
    If you don't understand or missed what the doctor said, ask him/her to repeat it. It may help to ask them to write down what they are talking about. Kaiser has a policy of printing out everything the doctor discusses during the appointment. Also, take some one with you. They may hear what you don't and they may help you with the questions.
    The doctor should not have said "bad". That is misleading. There is no "good" cancer. Everyone's beast is still a beast, no one has an easy time with this.
    The next few months will be challenging but doable. You have come to a great spot for support, answers and ears.

    Cindy

    PS - rambling is ok too.