Triple Negative Inflammatory Breast Cancer

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worriednlost
worriednlost Member Posts: 54

Does anyone have any experience with Triple Negative Inflammatory Breast Cancer ? My mom just finished 6 rounds of TAC chemo. She had a good response to it. Tumor shrank dramatically. The next step will be the surgery. She chose to have a mastectomy. After the surgery she will have about 25 sessions of rads on the lymph nodes and the tumor bed / area. I am guessing the after surgery pathology will determine her prognosis. I am trying to stay positive and thinking what else can be done. I have asked the docs to monitor the right breast which is not affected from what we know. My mom will have an ultrasound. Any feedback, advice or experiences  will be helpful.

Thanks. 

Comments

  • emilie
    emilie Member Posts: 2
    edited November 2011

    Hi, My mom has triple negative inflammatory. I think that its good that they did a mastectomy on you're mom, i wish my own mother had had one. Her's started as just a small like 2cm tumor, she was doing great on chemo and radiation. We thought that she was going to hear from her doctor that she was in remission and it turned out that it had turned into the inflammatory breast cancer and that at that point they couldn't do anything surgically. Something that I would monitor is breathing and discomfort in the chest. My mother kept having chest pains and breathing problems which she attributed to asthma. When she finally went to the hospital, it turned out that fluid had collected in her lungs and around her heart because the cancer had also spread there. I don't mean to scare you, but the inflammatory breast cancer (from what I've read) commonly invades the chest cavity. Again, I don't mean to scare you, just wanted to share my experience. Good luck to you and your mom!

  • worriednlost
    worriednlost Member Posts: 54
    edited November 2011

    She does not have a discomfort but she did have shortness of breath sometimes and a rare mild cough. She coughs once and it stops. Her lungs seem clear though.. I mentioned this to the doctors multiple times they all said that she is fine. Suggested she might have allergies or something. She had a PET scan, multiple chest x-rays, head scans all came clear. She is going to have the surgery in a month. I am hopping that they will not find any bad surprises during surgery and after the pathology is done. I am wondering what other tests can she get or what else can be done while we wait for a surgery date. Her heart rate and blood pressure were off during chemo.  Before she started chemo she was very tired. Now that she is done with her chemo and 1 week passed she seems more energetic. So far she was seen by 3 surgeons, 2 medical oncologists, 1 rads oncologist, cardiologist, gynecologist. I hope any one of them would have checked her lungs other tests ? Should I be demanding more tests ?

  • LISAMG
    LISAMG Member Posts: 639
    edited November 2011

    Has your mom and/or you been tested for the BRCA genes? TNBC and the significant family history are both indicators of a possible mutation. Please consider genetic counseling for yourselves and for the sake of your families. Knowledge is power. Best wishes.

  • worriednlost
    worriednlost Member Posts: 54
    edited November 2011

    She did have a genetic test done but we are waiting for the result. We have an appointment next week with the genetic counselor. Unfortunately the surgery is scheduled the day after the genetic counselor appointment. So we are not sure if the results of the genetic test will affect the plan for the surgery. My mom chose to have a mastectomy of the left breast also the surgeon is taking out some lymph nodes. Hope the surgery goes well and no surprises will be found. Very nervous about the surgery. The tests (mamo+ultrasound) of the right breast showed that she has some benign cysts. Should i be worried about those cysts? Any advice for the surgery now that it is less than a week away? I had a discussion with the medical oncologist and he said that he will just keep monitoring her. Few blood tests and physical checkups. I know that there is still radiation and surgery ahead but I have this uneasy feeling / worry that we are not doing more to fight it.  What the oncologist said was that if it does show up ( mets or recurrence ) its just simply really bad news and there is not much that you can do. I asked for an MRI and another PET scan after surgery. He explained that since she will have (standard treatment) TAC chemo, surgery and rads as far as treatments, getting extra screening tests does not change the prognosis or the life expectancy. As much I try to take one step at a time my mind is going all over.  Other than diet and exercises is there anything else that can be done ? Should we have asked for a double mastectomy ? The last mammogram and ultrasound of the left breast was done after 3rd chemo cycle and from what I can tell they will just do a mastectomy, is that normal procedure ?

    Any tips or advice is appreciated.

    Thanks. 

  • LISAMG
    LISAMG Member Posts: 639
    edited November 2011

    Yes, Having the genetic testing results before your Mom's surgery will have a major impact on whether a unilateral vs. bilateral mastectomy would then be recommended at that point. I would strongly suggest retrieving her results sooner, even a couple of days would be most helpful. Why not make the call to the genetic counselor and cite the extenuating surgical circumstances/need for her results?? Hoping she had a recent [pre op] MRI that included the right breast as well. Keep us posted.

  • worriednlost
    worriednlost Member Posts: 54
    edited November 2011

    I asked for the genetic tests to be done sooner but the genetic counselor was dragging her feet. The only day i could get an appointment was the day before surgery since they only see patients once a week. As far as MRI that was not done and looks like will not be done. The waiting list for MRIs is very long and to get it done at a private clinic is expensive close to $900. At this point not sure what to expect and how the surgeon will react to the results.  The only pre-op scan was US and Mammo of the right breast, left one was checked had same scans but it was few months ago (3rd chemo cycle). Should I ask for and MRI after surgery ? Can a surgery plan be changed in one day ? 

  • worriednlost
    worriednlost Member Posts: 54
    edited November 2011

    Quick update to my last post the genetic test results came in earlyer and they are negative. I am guessing thats good news ?

  • barfraz
    barfraz Member Posts: 2
    edited June 2012

    I have triple negative inflammatory breast cancer.  I was diagnosed Aug 2010.  I was stage IIIc when diagnosed and lymph nodes were involved.  I began 6 months of chemotherapy immediately followed by a modified radical mastectomy (24 or so lymph nodes were removed) then 30 radiation treatments. The biopsy at surgery showed all cancer cells were gone.  My oncologist was very aggressive in treatment.  In January a brain tumor was found and that was treated via gamma knife.  Recently a PET scan showed there was a cancer in my lung but a biopsy showed negative for cancer.  I'm having brain MRI's and CT chest scans every 6-8 weeks. I've been told that my particular cancer if it returns usually is in the brain or the lung.

    Out of consideration for my own kids I've had complete genetic testing and results show negative.  So happy for that.

    I have damage to my lung due to radiation...slight cough, but nothing serious.  I have major damage to my arm due to the lymph nodes being removed and extensive radiation.  My arm is fine sometimes but other times I have extreme pain in the axillary area and radiating down my upper arm, torso and across my chest to the sternum.

     I hope your Mom is still in remission and that she is comfortable.

  • worriednlost
    worriednlost Member Posts: 54
    edited June 2012

    She was declared cancer free after finishing all the treatments and having a ct-scan of her body. We were told by oncologist to try to forget cancer. The next day my mom had problems seeing and remembering things. At the ER three brain tumors were found. Now she had whole brain radiation and waiting for experimental chemo. After taking Prednisone for lung problems her lungs are now clear but steroids made her body weak. After brain tumor diag. she took more steroids Decadron this time. Her legs are weak and has severe pain in her back and legs. She has not able to sleep for a week now and taking high dose of strong pain killers. Some arthritis was found in her back but soon she will get a bone scan. Hope no surprises will be found there and she does not get weaker. I hope she will get into the clinical trial and that it will provide some relief. It been a very tough year with almost a happy ending that never happened. We are all extremely upset. It is a terrible disease. I hope some day it will be defeated.

  • menan
    menan Member Posts: 37
    edited July 2012

    Worried - I hope your Mom is doing good and did get into a clinical trial.  Just know there are people feeling your pain along with you.  Yes, BC is a terrible disease and too many people die from it. 

    I  also have TNIBC  and it is now stage 4 but I am optimistic I will reach that 5 year mark in December!  It will mean alot to me just to be alive (and a niece has her wedding then) even if I'm not cancer free! Mine came back in my lungs mainly - 4 bone mets and others in chest but gone at next PET - but I really worry about it coming back in my brain.   From questions my MO asked I expected it to come back in bones, they never asked how my breathing or cough was!

    I am on this site because I would like to find other TNIBC Fighters.  Good luck farfraz!

    My motto is 'I'm healthy, I just have cancer!'   

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