Did anyone else have to wait 5 weeks to see oncology?

B 1
B 1 Member Posts: 19
edited March 2014 in Breast Cancer #1
My mother (age 72 ½) had a Modified Radical Mastectomy on 09/21 with a 2nd surgery on 09/24 to stop the internal bleeding. The soonest the oncologist can see her is 10/27. The surgeon said because of the size of tumor and 5 of 22 lymph nodes as cancer, it is Stage 4.

In the meantime we have had complications from the surgery. 200 cc of fluid was removed from her chest wall this past week and it starting to fill up again. No one told us to watch out for her to become anemic nor that she should have been taking vitamins until last Thursday when the fluid was removed.

I live 70 miles away and was trying to take care of her long distance. I went in aleast once during the week and spent weekends with her. When I called the surgeon on Friday about the fluid again, I was told she needs to have round the clock care. So we had to find a place where I live and now I have to move all the doctors… medical, surgeon, oncology, etc. etc. etc……

Why does it take so long???? We still have no prognosis, nor treatment plan. This has been unbearable. So much for great care at Parma Community Hospital. Yet I saw the owner of the skilled medical facility that will be admitting her on Monday, as she said if I needed any help to call the center and she would come to my house to see Mom (I live in a small rural city). Also they already have an oncology appointment set up for Friday. Why did we have to wait to so long. Does everyone have to go thru this ****???

Thanks, Linda V

Comments

  • Marcia527
    Marcia527 Member Posts: 2,729
    #2
    Maybe they are taking so
    Maybe they are taking so long because she is having complications. I had a large tumor also, 6cm and 3cm and another smaller one and also had 2 of 15 lymph nodes with cancer (they gave me chemo before surgery so there could have been more) and I was still staged at 3a. I thought stage 4 was if they found it in other places besides breast or lymph nodes. I had to wait a month after surgery for more chemo. Then 6 weeks of radiation. The surgeon did give me a treatment plan after biopsy but changed it slightly after the surgery. All I can do is tell you what treatment I got but my circumstances are different. When you go to the oncology appointment maybe you should ask why you weren't told of a treatment plan sooner? Write down everything you want to ask.

    I hope things start going better for you and your mom.
  • B 1
    B 1 Member Posts: 19
    #3
    Marcia527 said:

    Maybe they are taking so
    Maybe they are taking so long because she is having complications. I had a large tumor also, 6cm and 3cm and another smaller one and also had 2 of 15 lymph nodes with cancer (they gave me chemo before surgery so there could have been more) and I was still staged at 3a. I thought stage 4 was if they found it in other places besides breast or lymph nodes. I had to wait a month after surgery for more chemo. Then 6 weeks of radiation. The surgeon did give me a treatment plan after biopsy but changed it slightly after the surgery. All I can do is tell you what treatment I got but my circumstances are different. When you go to the oncology appointment maybe you should ask why you weren't told of a treatment plan sooner? Write down everything you want to ask.

    I hope things start going better for you and your mom.

    He is on Vacation
    The oncologist is on vacation for two weeks. They could not get us in before he left cause he had to see all his other patients, we just have to wait.

    The surgeon told us it's Stage 4, cause of the size and amount of lymph nodes involved, but that was all the info he had.

    We will have an ocologist that is 5 minutes from my home. Not 70 miles away. Guess I have gotten so used to a small town and everyone knows who you are. (Norwalk, OH population 16,000) compared to Parma a suburb of Cleveland, where they could care less. You are just a number to them, Date of Birth they ask all the time.

    I am just upset cause mom is still in so much pain, almost a month after her surgery. She has pain in the upper portion of her arm, don't know if it's from the fluid buildup, nerve damage done during surgery, or another rease. PT evalution was suppose to be this past Friday, but got cancelled cause I had to bring her to my house for the weekend. At least Gaymont has their own PT right there. They will evaluate her on Monday.
  • Eil4186
    Eil4186 Member Posts: 949
    #4
    Well, I can understand your
    Well, I can understand your frustration. Waiting is torturous sometimes. I'm thinking, and I had my surgery end of April and had my apt w/ the onc.about 3 weeks later and started chemo 2 and a half weeks after that. They always give you about a month to heal from surgery before chemo and w/bigger surgeries even longer. The chemo knocks your WBC way down and if you were to develop an infection from your proceedure then you would be in bad shape.

    The time frame in your post sounds about right.
  • e_hope
    e_hope Member Posts: 370
    #5
    i didn't see my oncologist
    i didn't see my oncologist for the first time till 4 weeks after my double mastectomy, i had no complications and am 36... and started chemo 2 weeks after seeing him...

    They won't start the chemo while she is having all these complications esp at her age... chemo kills the immune system, so i'm sure that is the reason for some of your wait..
  • New Flower
    New Flower Member Posts: 4,294
    #6
    e_hope said:

    i didn't see my oncologist
    i didn't see my oncologist for the first time till 4 weeks after my double mastectomy, i had no complications and am 36... and started chemo 2 weeks after seeing him...

    They won't start the chemo while she is having all these complications esp at her age... chemo kills the immune system, so i'm sure that is the reason for some of your wait..

    I started Chemo 5 weeks after the surgery
    I saw my oncologist 3 weeks after mastectomy and my Chemo was started 5 weeks after my radical mastectomy. I had 21 lymph nodes removed and did have pain in my arm. The most important is protect and treat your mother from infection and complications, before starting Chemo
    You are definitely doing right action to take her closer to your home, so you can see her during all steps of her treatment.

    Hugs
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #7
    Oncologist

    I met with my oncologist, as all of the rest of my team of doctors on the same day before anything was done. The plastic surgeon wanted to explain the lumpectomy and the oncologist wanted to explain my whole treatment plan, contingent upon the pathology report. The oncologist is your main doctor forever after you have cancer.

    Kristin ♥
  • B 1
    B 1 Member Posts: 19
    #8
    Kristin N said:

    Oncologist

    I met with my oncologist, as all of the rest of my team of doctors on the same day before anything was done. The plastic surgeon wanted to explain the lumpectomy and the oncologist wanted to explain my whole treatment plan, contingent upon the pathology report. The oncologist is your main doctor forever after you have cancer.

    Kristin ♥

    Thanks to all
    Thanks to all of you, I worry way to much about my mother.

    She has been through a lot since my dad died 3 years ago. They all just expect you to know what is going on without telling you. No one mentioned becoming anemic or the that she would have so much pain in her arm. I feel his vacation was more important than my mother. And two things you don't mess with is Momma and the babies.
  • padee6339
    padee6339 Member Posts: 763
    #9
    B 1 said:

    Thanks to all
    Thanks to all of you, I worry way to much about my mother.

    She has been through a lot since my dad died 3 years ago. They all just expect you to know what is going on without telling you. No one mentioned becoming anemic or the that she would have so much pain in her arm. I feel his vacation was more important than my mother. And two things you don't mess with is Momma and the babies.

    Hi B1
    I will keep you and your Mom in my prayers. My Mom is 88 and is starting to get forgetful and her eyesight is bad, but she insists on living on her own in her own house. This is stressful enough without having to deal with cancer for the past year. I hope your Mom is ok going over to you, I know when my Mom is with me, all she wants is to go home and it can get a little testy in this house!

    Moon Over Parma! I remember Googling Parma to see if there was really such a place! There is! Go Drew!

    Take care of yourself too!

    Pat
  • jnl
    jnl Member Posts: 3,869 Member
    #10
    padee6339 said:

    Hi B1
    I will keep you and your Mom in my prayers. My Mom is 88 and is starting to get forgetful and her eyesight is bad, but she insists on living on her own in her own house. This is stressful enough without having to deal with cancer for the past year. I hope your Mom is ok going over to you, I know when my Mom is with me, all she wants is to go home and it can get a little testy in this house!

    Moon Over Parma! I remember Googling Parma to see if there was really such a place! There is! Go Drew!

    Take care of yourself too!

    Pat

    I met my oncologist right
    I met my oncologist right after I had the ultrasound guided core biopsy and they knew I had bc. My cancer center set up appointments with my oncologist, radiation oncologist, plastic surgeon, nutritionist and the genetic counselor all in the same day for us. It was really nice so that we could meet them all and know what the plan was.

    Leeza
  • B 1
    B 1 Member Posts: 19
    #11
    jnl said:

    I met my oncologist right
    I met my oncologist right after I had the ultrasound guided core biopsy and they knew I had bc. My cancer center set up appointments with my oncologist, radiation oncologist, plastic surgeon, nutritionist and the genetic counselor all in the same day for us. It was really nice so that we could meet them all and know what the plan was.

    Leeza

    Thanks to all - this has helped so much
    As hard as it was yesterday leaving her in a strange place, I feel better. I know they will make sure she takes her meds and eats. She is confused and forgettful at times and changes like this sure don't help. But I get to see her every day and am only 5 minutes away, not an hour.
    The surgeon wanted to do the surgery right away after diagnosis and there just wasn't time to meet all these people. A case worker came and talked to mom, dropped off a pink bag with a book and some other stuff, but the book didn't tell you a whole lot, just general stuff.
    We have an oncology appt on Friday, so we should know more then. (I keep saying we, its as if I going thru this also.)
  • Kylez
    Kylez Member Posts: 3,761 Member
    #12
    B 1 said:

    Thanks to all - this has helped so much
    As hard as it was yesterday leaving her in a strange place, I feel better. I know they will make sure she takes her meds and eats. She is confused and forgettful at times and changes like this sure don't help. But I get to see her every day and am only 5 minutes away, not an hour.
    The surgeon wanted to do the surgery right away after diagnosis and there just wasn't time to meet all these people. A case worker came and talked to mom, dropped off a pink bag with a book and some other stuff, but the book didn't tell you a whole lot, just general stuff.
    We have an oncology appt on Friday, so we should know more then. (I keep saying we, its as if I going thru this also.)

    Just want to wish you good
    Just want to wish you good luck on Friday!

    Kylez ♥

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