Lost, confused! No treatment plan!!!!!!!!

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Danaqtr
Danaqtr Member Posts: 48

Hi,

My mother diagnosed on 14 August with IDC. The surgeon decided lumpectomy as her tumor is 1.4cm. I didn’t get full explanation from him. Many doctors I asked they are with lumpectomy not mastectomy. So I agreed with the lumpectomy. The doctor said from the ultrasound that the lymph node looks normal not affected and he said she looks stage 1B. The tumor is ER + and PR + both 95% HER2 is negative. The ki67 is 5%. Her age is 68 years old. I have no idea what to expect after the lumpectomy? How painful it is after the surgery? How long she needs to heal? They didn’t do any MRI or Pet scan for her.. what if there are another tumors? Why they didn’t do PET scan? If she has 1 node with cancer. Is this mean maybe she will get chemo? If all her nodes are clear, can we skip radiation? I read very scaring things here about the side effects of radiation. The doctor didn’t even check with us if she might have cardiac problem. I feel lost Without having potential treatment plan with scenarios. Is it normal they don’t tell till after the sur

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  • GraceB1
    GraceB1 Member Posts: 213
    edited September 2018

    Your best plan is to see an oncologist before surgery. They can guide you through the chemo questions and hormone blocking therapy. I didn't have a lumpectomy so I can't answer those questions for you. They may be planning on doing a sentinel node biopsy at the time of lumpectomy to check the lymph nodes. Not everything shows up on the scans. You usually get radiation after a lumpectomy verses a mastectomy where you don't unless the lymphs are involved. As far as pain and recovery go it varies greatly from person to person. Chemo was hard on me but radiation just made me very tired. Others had much better or worse experiences. Just keep asking the drs questions until you're satisfied with the answers you get.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited September 2018

    Im 68 and had a lumpectomy in July (and a re-excision to get clean margins in August). The surgery wasn't terribly painful, I took a prescription pain pill that night at home and I think once the next day. Most women don't see an oncologist until after the lumpectomy because until the doctors have the final pathology after surgery, they can't plan a course of treatment. It would all be hypothetical until then.

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Hi Dana...After the surgery she'll be referred to an Oncologist who will order the necessary tests

    Lumpectomy was easy for me. I didn't take any pain killers...just uncomfortable for the first couple of days.Everybody reacts differently I wish her the best

    Good Luck to your mother. We're here for you.

    Sending hugs

    Sheila

  • Danaqtr
    Danaqtr Member Posts: 48
    edited September 2018

    Hi, what they said to you after the surgery

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited September 2018

    you won't get the full treatment plan until after the lumpectomy. They'll need to test the tumor and lymph nodes. after my lumpectomy I met with the Radiation Oncologisgt, Medical Oncologist, and Breast surgeon to discuss treatment plan. My hospital has a tumor board, where all the docs meet to review each case and plan treatment. Typically you will have radiation after lumpectomy. They want to kill any stray cancer cells. Perhaps they will not recommend radiation due to your mother's age, I don't know. I had no major problems with the radiation. They typically won't do a PET scan unless there is some sign that the cancer hasn't spread. I have never had one. This is really the hardest part of this whole ordeal, the waiting and wondering. Try to be patient

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Hi...yes after surgery and some healing I met my Oncologist who ordered all the necessary tests.

    I never had a pet scan .....After that port was placed because I have very tiny veins.

    I had chemo first follow by radiation and 5 year of Femara

  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 108
    edited September 2018

    I agree with seeing an oncologist prior to surgery. I had my port put in (I was HER2+++ so I knew chemo was on the table) and had a node biopsy during the port surgery. So I knew right away I was node negative. I also had an MRI, MRI biopsy and two additional ultrasounds to look for additional cancer spots. No PET scans.

    Once I had my original mammogram and they found cancer, my primary doctor wanted me in surgery ASAP. Since my primary and the cancer center I wanted were in two different hospitals, I was already listening to my cancer centers advice. I ended up having chemo, lumpectomy (twice, once for re-excision for clear margins) and radiation (and more chemo because of the HER2) and NOT just jumping into the surgery for which I am very thankful.

    I was told (by my radiologist, ironically, who I met with at the very beginning) that I had two months from diagnosis to make up my mind about treatment. I was diagnosed on December 8th and started chemo on January 23rd. While it can be, for me, cancer is not an emergency. I wanted ALL of my facts and wouldn't let anyone rush me. Ask a million questions. It's your body and their job. If you don't like the answers, change doctors.

    And the lumpectomy surgery was easier than the node biopsy, quite frankly. Two ibuprofen three times a day for two days and I was fine. I also took the advice of taking it easy.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2018

    Danaqtr , I'm 74 and had a lumpectomy in July. The surgery wasn't bad at all and not very painful. The doctor prescribed very strong pain killers. I took them on the first day but they really made me spaced out, so I took only Tylenol thereafter.

    It took a couple of weeks to heal. Most pain (not bad pain) was where they removed the nodes. The pain subsided in about six weeks though I can sometimes still feel it very slightly.

    I started radiation last Thursday. I felt fine the first day but was fatigued and a little shaky after the second treatment and spent a good part of the day in bed yesterday. I was told fatigue would begin about the second week of treatment, so was surprised that it hit me after two days. I don't think this is typical and have no idea if the same thing will happen after my third treatment this Monday and thereafter. I've been told some people go right to work after treatment.

    The treatment takes about five minutes, though they will take X-rays and reevaluate the markings every Monday and Thursday. They said it wouldn't take very long.

    Prior to treatment I had a Radiation Planning Session. Article at this site: The Radiation Planning Session (Simulation), which took just over an hour. The day of my first treatment took longer because they needed to take x-rays and add additional markings.

    One of the reasons they are very precise with the markings and recheck twice a week is to protect the heart.

    I apply moisturize three times a day. Another helpful article: Skin Care Tips

    I wish your mother well! My daughter has been a huge support for me.



  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2018

    My mom had a lumpectomy for Stage 1 cancer at age 80 for a 1.6 cm tumor. She was at the casino the next day, and truly had no pain..

    She absolutely breezed through it. I would agree to go see an Oncologist now.

  • Danaqtr
    Danaqtr Member Posts: 48
    edited September 2018

    tThanks. I was reading here some ladies got radiation immediately with the lumpectomy which is before closing I think it is called IORT instead of traditional sessions. Have you asked about it???

  • Danaqtr
    Danaqtr Member Posts: 48
    edited September 2018

    wow. Your mum is great!!

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited September 2018

    Danaqtr, yes it is called IORT and it is essentially a single dose of radiation while the patient remains sedated from the lumpectomy. It's still considered experimental so very few hospitals do it and eligibility is strict. If it's being offered to your mom it is well worth considering. (I looked into it but wasn't eligible.)

  • Danaqtr
    Danaqtr Member Posts: 48
    edited September 2018

    if IORT is safe. I will ask the surgeon about it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2018

    Denise-G, it is wonderful to read that your mom had a lumpectomy and breezed through it. I have friends that have breezed through it. We all react differently. I pray that it goes as well for Danaqtr's mom!!

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