Cancer in scar after double mastectomy; what now?

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    hoping you get good news, keep us posted

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    SharonS -thank you for thinking of me. The surgery went smoothly. The tumor was small 0.8cm and all 3 lymph nodes were negative! I feel very blessed. I met with my MO,she initially said I only needed to do radiation and switch to AL. Based on the science of my case. I explained I wanted to be aggressive and and was very concerned I had a recurrence and I am fairly young. She understood where I was coming from and said if it was her she would probably also do chemo. she agreed it wouldn't be unreasonable to chemo. We left it that she would present my case to the tumor board on 9-14-15 and than. Meet again on 9-18-15 to finalize the plan. The next treatment Can't start unti l the. End. Of September. Thanks

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    Doingwhat - sounds like your MO is on board with giving you the best treatments. Will the tumor board have another oncotype on this tumor?

    I will be glad when Tuesday gets here so I know the rest of the story. This is all kind of crazy people getting local recurrence after thinking a mastectomy was the best option.

    Hang in there...

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    SharonS you are being very supportive! According to my MO the oncotype is only for initial tumors and is not a test for recurrences and the Oncotype lab won't accept recurrence specimens. I hope you get some straight answers on Tuesday. It is very difficult to wait. I am very happy your test showed no metasitis! That is great news!

    Initially I thought out my plan of care and I thought I could get through breast cancer once but didn't want to constantly worry about my breasts so

    The whole purpose of the double mastectomy was to get rid of everything! I was not expecting this!

    Let's keep in touch and support each other! Only someone in the same situation can truly understand.

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    My MO did oncotype on my recurrent tumor. He said there are not enough recurrent rumors for validation, but thstbitvwould still give good information on aggressiveness. Mine came back very high. We were not sure insurance would cover it and I was willing to pay (because initially they did not feel the rumors would be aggressive). I am thankful we did. The oncotype came back quite high, at 40. I had 2 rumors and we only sent one

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    Hi Kbee,

    Your story made me ask my MO about another oncotype test,but she said the data provided by Oncotype is based on an initial tumor and the chance of recurrence. I have had the recurrence!she said Oncotype would reject the specimen. Glad you were able to sneak in for a 2nd ocncotype.

    Jennifer

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    That is good to know that the oncotype just rates initial tumor. It wasn't covered by insurance with my first cancer, but doing it on the second cancer tumor did show that I was high and needed chemo again.

    Tomorrow by this time I should have some answers, although I have been here before the waiting is killing me.

    I would love to know the questions you think I should ask tomorrow

    I believe that with both cancers we have really done all that we could to lower the chance of recurrence, but I guess there is always the other 20%.


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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    Sharon, There are a few places that can test tumors for responsiveness to various chemo drugs. I think they are experimental, but I do wish I had asked about it. Keep us posted

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    sharonS-good luck tomorrow. Write down all questions you have, it is easy to forget questions during stressful MD appointments.if you can bring along a family member or friend so there are 2 people to hear everything. An important question is to ask where in the breast is the tumor?(subcutaneous fat or the chest muscle) I would think it would be helpful to have a biopsy to learn it characteristics benign or malignant and its hormone receptor qualites (estrogen and progesterone and HER2)Also have you been on tamoxifen or AL hormone blovking medications? You may need to change medication? Hope these were helpful questions. BTW my tumor was in the subcutaneous fat so it was able to be removed without disturbing the implant. Hope you feel informed and educatied and have a care plan after your MD appointment tomorrow, best wishes.

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    DoingwhatIhavetodo - Good morning....Thanks for the great questions. I was on tamoxifen after my first cancer, obviously didn't shut down the estrogen as my second cancer was estrogen positive also. I have been on arimidex a little over 2 years now as I was fully in menopause when the second cancer was discovered.

    My husband is meeting me at the cancer center to be my other set of ears and my hand holder. He has been my rock through all of this and I think he is more stressed than I am at this point.

    I will check in later today. It is beautiful here and our soccer team has a match this afternoon.

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    Met with oncologist - Good news that Hip Bone Density is increased! Not so good news, the PET lit up on the mass on left implant, it is subcutaneous. It also lit up on right side where I have been having pain with breathing. Now a biopsy of mass by surgeon on Monday and a radiologic biopsy of right side on Thursday the 17th. That thickened area is between ribs so needs to be guided.

    Back to see oncologist on the 22nd

    More waiting....

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    Ack! So sorry you are dealing with all of this waiting. Hoping it yields good news.

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    Sharon S sending good you good wishes.! Iunderstand how hard it is to hurry up and wait.

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    Update on biopsy appts. I know a radiologist and he worked some magic and now I am going for the radiologic procedure tomorrow at 1230. That is the right side irregularity that has everyone baffled, he said they won't know what it is until they get a piece and look at it.

    I have been thinking about this side. He said it is diffuse from intercostal space 4-7. This is the side that had 3 tissue expanders and many infections and after the last expander was taken out I had a seroma to deal with for a few weeks. The first expander infection I was septic and in the hospital for a week. Worst week of my life - 10x worse than any of the chemo treatments.


    Surgeon appt on Monday. My radiologist and oncologist said they are pretty sure that the nodule outside of breast implant is very well contained and should be an easy surgery.

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    good luck tomorrow. It is very helpful to know the right people

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    Friday went ok, more involved than I thought. Tomorrow 115 appt with surgeon to look at other side

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    Sending you good wishes

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    keep us posted

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    Nodule on left was removed Tues. It is breast cancer. Will find out the rest of pathology tomorrow. Surgeon and Onc spoke and they think just radiation at this point, but tumor board meets on Wed.

    Have been at the beach with my lady friends and it was just what I needed. Back to reality and gearing up to fight this crap again. Round 3

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    Damn. I am so sorry you have to go this crap again. I hope just radiation. Keep us posted

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    Hi Sharon, I am very sorry to hear it was found to be breast cancer. You have a great attitude about getting ready for a fight! I met with my MO on 9-18-15 and I have a final plan. The tumor was removed on 8-31 it was small .8 cm with clear margins and 0/ 3 lymph nodes all negative. Best case scenario for difficult situation! The tumor board met on my case and 4 recommended chemo 2 said no need for chemo. I am doing chemo because that is what my gut has been telling me to do. I want to feel I have done everything possible to prevent another recurrence. If I had chemo last time I would not have been able to do chemo again. I will do radiation after chemo. I wish you strength and I am so glad you got to have a girls trip before treatment, that's the best medicine

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    Glad you have a plan DoingwhatIhavetodo. I have had Chemo twice. The Onc said if we could avoid chemo and stay on the same aromatase inhibitor it would be better for the future. They are still calling it a recurrence and not metastatic but are not sure about this stuff on the right even though it came back chronic inflammation.

    I should know more tomorrow afternoon

    Thanks Kbee



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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    I also have done chemo twice; just a different regimen the second time.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2015

    I too did chemo twice after my recurrence - the 2nd one was different drugs but it was less then 3 months after the 1st six rounds. The first cocktail mixture didn't produce pCR and even tho surgery supposedly got clean margins, the tumor board recommended more poison before rads. Maybe because I'm HER2+ so not too much else to do?

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    KBeee you had the same two regimens as me in the same order.

    I had consultations last week and this is the preliminary plan. Remove implant and get clear margins since only the small tumor was removed two weeks ago. Then radiation.

    Still waiting on the ER/PR test. If it comes back positive, they will change my AI. If it comes back negative chemo could be in the cards again. The pathology report said this looks very much like the cancer on the same side in 2012 but only moderately aggressive this time.

    I should get a call tomorrow about surgery date.

    Minus Two - My other two cancers have been HER2-. I am sorry to see so many people with many recurrences.

    My DH and I say well at least we kinda know what to expect. He is hanging tough with me and keeping my laughing.

    Have a good week all

    Sharon

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    Keep us posted. So sorry you are facing this crisp yet again

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2015

    Sharon - so sorry you have to revisit this nightmare again. Yes, please do keep us posted.

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  • DoingwhatIhavetodo
    DoingwhatIhavetodo Member Posts: 59
    edited September 2015

    I am thinking of you and wishing you strength and good health

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  • SharonS
    SharonS Member Posts: 326
    edited September 2015

    Thanks all. Surgery is Thursday 1240. ER Pos and PR Neg and HER2 neg just like 2012. So hopefully just Radiation.

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited September 2015

    Hi Sharon - I've been following this thread and I'm so sorry you are going through this again. You've certainly had more than enough and with a grade 1. Can I ask if you know the percentages for ER and PR. I hope surgery goes smoothly and recovery is fast. Lots of luck. I hate this disease.

    Hugs

    Nancy

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