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Triple Negative breast cancer; Recurrence; now Stage IV MpBC

Hi everyone

My name is Yasir and i am posting on behalf of my mother 71 years old, she was diagnosed with a triple negative breast cancer (Right breast) back in May-20

Below is a brief history what my mother has been going through just to send a message to the world that do not stop fighting and do not stop yourself from your research on cancer


The cancer was diagnosed TNBC (Triple Negative), tumor size 4 x 3.5 x 2cm, the doctor decided the TAC regimen chemo therapy 3 cycles and Surgery (Mastectomy) and then again 3 cycles of TAC (i think this is called a Sandwich approach and is now obsolete; currently the practice around is either of the two, 1.) 8 cycles of chemo and then surgery or 2.) Surgery and then 8 cycles of chemo, unfortunately back in the time i did not researched properly)

Further details of the treatment as mentioned below:

Phase 1:

TAC x 3 cycles completed on 11-Jul-20; Mastectomy done in Aug-20 along with few lymph nodes removal; TAC x3 cycles completed on 10-Nov-20

Radiotherapy was then advised

  1. 16 fractions of Radiotherapy (42.5 Gy) was completed on 22-Dec-20

Supposedly there was NED (No Evidence of Disease) and USG (ultrasoung sonograph) were WNL (Within Normal Limits) till Jul-2021, my mom noted a fluid collection site under her right armpit; Memmography was done and it was ruled out as seroma

from Jul-21 till Oct-21 there was a confusion and proper diagnostics was lacking to rule out the recurrence (3 months wasted)

Phase 2:

However problem did not stopped and continued with pain and swelling in her right arm untill FNAC (from the swollen right arm pit which resulted in Lymphedema) was done in Oct-21 which proven Malignancy followed by a PET Scan in Nov-21 which showed FDG active cells in the right axilla with a necrotic mass of 9x5.4cm!

Oncologist recommended Chemotherapy of CEF regimen x6 cycles (no idea how the doctor wrote this treatment plan despite knowing that the dose limit would be reached till cycle 2) however the moment my mother received the 3rd chemo in Dec-21, it shattered her whole body and now she is bed ridden and with a big deep cavity wound in her right arm pit (where the necrotic mass was identified) and top of it my mom developed a spinal fracture (L4) due to osteoporosis but however it is a very stable fracture but still, it simply makes me wonder was the chemo worth it?

Root cause of the wound according to a plastic surgeon was that the Chemo melted all the cancer cells and the skin was not able to hold it down so it slowly melted and resulted in a big deep cavity which has become now a non healing malignant wound!

After days of research online and an online consultation with a specialist oncologist we were made aware that there is a dose limit for the usage of Anthracycline based chemo regiments, hence this threshold of heart toxicity limits the chemo based treatment options!

Biopsy was done after taking a tissue from the recurrence site (arm pit) and the result was shocking!, it is ruled out as Metaplastic BC

So today we are with no line of treatment, i am just hoping i might find some answers here on what could be done next


Met with a specialist oncologist again, and after reviewing everything he advised to do Radiotherapy to instantly kill the cancer cells first but again the health of the patient should be sufficient to sustain this treatment, we will go to the hospital again this coming Saturday 29-Jan-21....... need your prayers please

-------------------------------------------------------------

Questions:

  1. I just cannot understand that how in the world within 7 months there is a recurrence after such a heavy treatment (phase 1 above)
  2. Even if there is a recurrence, then such a huge necrotic mass is developed in the right arm pit?!
  3. Even worse, the recurrent cancer have evolved into a Metaplastic (MpBC) breast cancer as if triple negative itself was not enough!
  4. Line of treatment? none? only palliative care?

Learning Curve (which i failed to do for my mother) :

  1. Do not take any kind of breast cancer lightly,
  2. Research about the Oncologist who is specialized in breast cancers, make a well informed decision and take the appointment and stick to that doctor
  3. Second opinions do help and might reveal what other specialist are thinking but i would prefer to make video appointments if you are taking a 2nd opinion no need to visit them physicall this will add more confusion
  4. Take a deep dive and do a thorough research of your own and be aware of the technical terms
  5. Every single day counts!, so if you are waiting for a test result or for something else ask your Oncologist is there something you can do in parallel
  6. If the lymph nodes were removed during your surgery then going for a radiotherapy would end up swelling your arm and ending up with Lymphedema! this is exactly what happened to my mother
  7. The dx testing sequence for any cancer should be as follows
    1. Biopsy/ FNAC of the suspicious cancer site- to determine weather there is malignancy or not
    2. Immunohistochemistry (IHC) test to identify the hormone receptors
      1. This IHC test will tell you against the 6 to 10 marker scale assessment that weather you are ER+/-; PR+/-; HeR2+/-
      2. For further clarity, a FISH test is also recommended
      3. Further if the report is showing your hormone receptors are negative it is simply not the right way; you should tell the lab to either repeat or give a reference range in % i.e. what is the lab definition of the word "Negative", you need a complete 0 to rule out the hormone therapy
      4. This test will guide the rest of the treatment plan weather you will undergo chemotherapy or hormone therapy
  8. Once you are on a Chemo; check and research about the chemo regiments which are being given to you and ask your doctor about the heart toxicity limit
  9. If the cancer is aggressive (just like my mother's case) i would have stopped the chemo at the right time and continued a good life rather than day and night suffering of continuous pain, but again your doctor should advice in case he doesnt you have to ask!
  10. PET CT scan is extremely critical and a must prior to start any treatment in between your treatment and at the end of your treatment, so that your doctor have a comparative study; i know for a fact that the cost of a PET scan is outrageously high and if you cannot afford it for some reason feel free to fly to India, the cost of a full body PET scan is around ~133 USD

I am ready to share all of my mother's diagnostic reports in case you are interested to see how it looks like and what to expect from it and how to read it yourself, also for research purposes feel free to ask

I know for a fact that the above events might sound very disturbing for you but imagine the pain i am going through while i am writing this post, the only intention me being as much detailed as possible so that all the lovely women, mothers and girls out there do not end up the way i am right now, even if you do end up with all the above symptoms at least you will have a self satisfaction that you did the best you could and its ultimately God's will unlike me that i am going to live with this guilt throughout my whole life that i could have done better for my mother....

Thanks and God bless

Comments

  • obsolete
    obsolete Member Posts: 333

    Dear Yasir, as dawn approaches, somebody should be along soon. We feel your pain, but medicine has always been imperfect. Your mother is blessed to have you. Hugs, blessings & prayers...


  • rosiecat
    rosiecat Member Posts: 1,190

    Dear Yasir,

    Thank you for such a full and honest post. Please don't feel that you have failed your mother in any way. You haven't. You're absolutely right about breast cancer being a steep learning curve.

    I have triple negative metaplastic breast cancer, grade 2, stage 2a. I consider myself lucky that my original pathology diagnosed my tumour correctly. It's such a rare disease that it may well be misdiagnosed - this is just my opinion - but a Canadian friend was diagnosed with plain triple negative and it was only when her tumour reappeared after a few months that another biopsy revealed the mistake and she was then diagnosed with metaplastic b/c

    Chemotherapy often fails to have any impact whatsoever on metaplastic breast cancer and my breast surgeon was very reluctant to allow me to have it, or even let me see the hospital oncologist. After a battle and a visit to an oncology consultant at a leading London teaching hospital, I did get 6 cycles of FEC T following my mastectomy. I have no idea if this worked at all, but I'm now three and a half years out. Had you known that your mother had metaplastic stage IV her consultant may well have decided that chemotherapy probably wouldn't help. You could ask if the original biopsy could be re examined. It won't change anything, but it might help you and others in the future.

    Perhaps you could seek another opinion at a leading teaching hospital as there may be new or innovative treatments/trials which would give your mother more time, or you might feel that your mother has been through enough. I'm thinking about your peace of mind as much as your mother's health needs. You sound like a very loving and supportive daughter. That will mean the world to your mother.

    Metaplastic breast cancer is particularly aggressive and notoriously difficult to treat. Your mother has been very unlucky to have such a rare cancer. I wish more was known about it, but for rare diseases it's difficult to attract research grants, though more research papers are beginning to appear online. If you google metaplastic breast cancer 2020, 2021 and 2022 you will find some explanations of what metaplastic cancer is, what the different subtypes are and what they mean in terms of prognosis.

    My prayers are with you. Feel free to send a private message if it would help.

    Gill


  • rosiecat
    rosiecat Member Posts: 1,190

    Dear Yasir,

    I posted my own experience of metaplastic triple negative breast cancer here about an hour ago. However, I realise that I've deleted it by mistake and there doesn't seem to be any way that I can resurrect it. However, If you would like to ask me anything at all about my treatment, please send me a private message. I was diagnosed with metaplastic cancer three and a half years ago.

    My metaplastic tumour was spindle cell mixed with adenosquamous, your mother's pathology report should give information regarding subtype. It's a very aggressive and rare cancer, chemotherapy resistant and often caught too late. My mammogram, just months before my diagnosis indicated a simple cyst and I wasn't recalled, though I certainly should have been.

    Regarding your mother's future healthcare, I would strongly advise paying for another opinion from an oncologist at a leading teaching hospital, I did this myself as I had lost trust in the hospital treating me. There may be innovative treatments or trials only available at the larger teaching hospitals which could offer your mother more time. Palliative care may be your only option and an experienced oncologist would give you an idea about the best treatments and hospice care or hospice in the home care.

    You sound like a very caring and supportive daughter and this will mean so much to your mother. You have done the very best you could in extremely difficult circumstances. Please don't have any doubts about that. As you say, dealing with cancer is a steep learning curve.

    With prayers,

    Gill


  • rosiecat
    rosiecat Member Posts: 1,190

    Dear Yasir,

    I posted my own experience of metaplastic triple negative breast cancer here about an hour ago. However, I realise that I've deleted it by mistake and there doesn't seem to be any way that I can resurrect it. However, If you would like to ask me anything at all about my treatment, please send me a private message. I was diagnosed with metaplastic cancer three and a half years ago.

    My metaplastic tumour was spindle cell mixed with adenosquamous, your mother's pathology report should give information regarding subtype. It's a very aggressive and rare cancer, chemotherapy resistant and often caught too late. My mammogram, just months before my diagnosis indicated a simple cyst and I wasn't recalled, though I certainly should have been.

    Regarding your mother's future healthcare, I would strongly advise paying for another opinion from an oncologist at a leading teaching hospital, I did this myself as I had lost trust in the hospital treating me. There may be innovative treatments or trials only available at the larger teaching hospitals which could offer your mother more time. Palliative care may be your only option and an experienced oncologist would give you an idea about the best treatments and hospice care or hospice in the home care.

    You sound like a very caring and supportive daughter and this will mean so much to your mother. You have done the very best you could in extremely difficult circumstances. Please don't have any doubts about that. As you say, dealing with cancer is a steep learning curve.

    With prayers,

    Gill


  • YasirKhan
    YasirKhan Member Posts: 10

    Hi Gill

    Thank you for your touching post, I am her youngest son, you are absolutely right going at a larger hospital with better infrastructure is a good option but unfortunately the circumstances don't allow this anymore

    The health of my mother is not allowing her to go anywhere maybe because of osteoporosis in her spine, heart toxicity effects and overall weakness due to her age, no deep sleep etc and to top it off the cancer is doing its job in its full capacity

    Another thing i learnt down the way is medication is something else and practicality/ feasibility of the medications is something else, i think the doctor should make its best judgement by evaluating all the parameters of the patient's health and then advise further medications not just follow the rule book of 6 or 8 cycles which unfortunately was done with my mom :(

    I appreciate your time and efforts for your warm reply, it means a lot...

  • YasirKhan
    YasirKhan Member Posts: 10

    Hi

    Thanks for your touching message.... indeed it is true that medicine has always been imperfect

  • rosiecat
    rosiecat Member Posts: 1,190

    Hi Yasir,

    It was very wrong (and a little sexist) of me to assume you were a daughter rather than a son.

    I'm sorry that your mother's cancer has progressed so rapidly. Chemotherapy often causes a great deal of long term damage. I was led to believe that side effects would be temporary - they weren't. Your mother might have been spared this if metaplastic cancer had been diagnosed from the beginning.

    I'm quite sure that you'll work to find the best quality palliative care for your mother and support her through all of this. I do hope that nursing care in the home is available, you will undoubtedly need help. Remember to take care of yourself too.

    Best wishes, my prayers are with you.

    Gill


  • salamandra
    salamandra Member Posts: 735

    Hi Yasir,

    I went through something similar with my mother when she was 54. It's a nightmare no matter your age. But I will say please do not beat yourself up for what you think you failed at. There is absolutely no way to know how things would have gone differently if you had acted differently. They might be better, but they might be the same or worse, except with you second guessing yourselves for not being more aggressive. Ultimately though, it was your mother's body and your mother's cancer, and her decisions must guide the way. That can lead to a feeling of helplessness but also hopefully (eventually) comfort.

    Sometimes we or the people we love are the unlucky ones who fall on the wrong side of the statistics. It's not fair any more than it's fair when we get lucky. It just is and it just sucks.

    For what it's worth, I hope you can set aside some of your feelings of guilt or second guessing at least for now, so that you can spend the time you have with your mother with as much of yourself present and loving as possible. However rough it seems, while you still have her, you still have her, and this time is still precious. Heart

  • YasirKhan
    YasirKhan Member Posts: 10

    Hi Gill

    Its absolutely fine and it is common to assume that most probably a daughter would be caring for her mother as usually daughters are a gem and are most connected to mothers.

    Yes you are absolutely right, if the pathology lab would be advanced enough to detect the MpBC it would have been a different scenario but what to do, the biggest bad luck was that the 1st diagnosis happened in May-2020 where the whole world was under severe lockdown due to COVID, so the treatment for my mother was progressing extremely slow

    Now we are in Dubai, and unfortunately palliative care hospitals/ hospice care is not available and if available with limited services/ care example NGT tube feeding is not available at home but then again i just thank God that atleast the whole family is there with our mother in her last days

    Thanks

  • YasirKhan
    YasirKhan Member Posts: 10

    Hi Salamandra

    After reading your message i have to say that the experience what you have shared is the dead reality and practical, i am feeling a bit relaxed now you are right there is no point in beating myself, but you know trying to stop that beating is not easy either, because at every point in time your brain tells you "what exactly you did" and the answer comes back "nothing just watched"

    What i have learned so far that the whole family should discuss in great detail and in lengths till the end of the earth, on the subject "Quality of Life Vs Medical Treatment", i mean now i think that i wish i can go back and would have stopped the treatment at a certain time to enjoy the last moments whatever was left, atleast by this my mom would be walking and talking to everyone (again this is just an assumption)

    Another lesson i learned that the painkiller being given should also discussed in great details; for example Tramadol is just a step below Morphine but can make you go crazy! from what we have experienced with our mother either take simple Paracetamol or directly go to Morphine also if you are taking any kind of sleeping pills should be stopped/ reconfirmed from your Oncologist, although benzodiazapem is a good one.

    Now my mother is unconscious (because of continuous journey of torture and pain the cancer was causing and of course which lead to malnutrition and dehydration) and just resting in the hospital bed, but atleast now when i see her sleeping throughout the day gives me a soothing feeling that there is no more pain atleast, even though she cannot speak or see or move but atleast you see that she is relaxed and sleeping is all you need to see and feel and makes you feel content....

    Now i have changed my thinking and mentality that there is no point in pushing towards the treatment now is the time to make her comfortable as much as possible (wish i would have taken this decision earlier)....

    I just pray to all the lovely woman/ mothers out there that no body deserves to go through this continuous suffering, i mean medical science is always rushing towards the cure but no body cares about the well being of the patient no assessment weather the body can sustain the chemo damage or not, i mean what to say the treatment should stop at the right moment so that the remaining months are well spent

  • rosiecat
    rosiecat Member Posts: 1,190

    Hi Yasir,

    I was so glad to learn that your family is there to offer support. You will need each other.

    I was appalled that access to hospice care is so limited in a modern country like Dubai. I guess it's a case of the wealthy paying whatever is asked, while the rest of the population is left to fend for itself. There doesn't seem to be an easy answer to this, unless there are charities that are able to help. Many hospices in England are partly funded by charities. I was hoping you would be offered professional help and access to palliative care.

    Having worked as a volunteer on the wards of a hospice for 22 years, I can honestly say that very few patients are fed by tube. They are offered help with eating and drinking, but very often just prefer to sleep. Pain relief, which your mother will surely have access to, works extremely well. Almost all our patients die very peacefully and are free from pain. Their final days are calm. I really hope and pray that this will be your family's experience when your mother's end comes. Some of our patients decide to go home for their final weeks, and their families become their main carers. However, they are fully instructed about the administration of medications, how to inject and how to lift patients. I do hope that at least this will be offered where you are.

    You are giving your mother your love, your support and your time. That's what she needs most. Good luck, it's not going to be easy, but you will come through this. God bless.

    Gill

  • jhl
    jhl Member Posts: 174

    Yasir,

    I have no advice to offer but I do want you to know there are men and women all over the world who will be thinking about your Mom and you as you travel these last stages with her. I am in the US and this forum is an amazing group of people, all who have been affected by breast cancer from all the corners of the world. I wish your Mom peace and comfort in the days ahead. I wish you and your family strength and love as you all navigate this difficult time. I can tell she has been a wonderful mother who you love dearly.

    Be well,

    Jane

  • moth
    moth Member Posts: 3,293

    op, I would like to offer two thoughts:

    First, we can do everything right, do all the tests and second opinions and things still end badly. It's not your failure, it's not your care team's failure. It is that this is a difficult disease and while success rates are high for early stage, they're not 100%. Our combined scientific knowledge is just not there yet. There are a sadly high percentage of cases where the cancer is mutating in ways that we do not have treatment for.

    Second, deciding when to keep trying and when to stop is also IMO an impossible decision. We may assume if we stop chemo the pt will feel better and have a peaceful happy time. This is sadly not true! The cancer can cause rapid damage to a cascade of organs leaving the patient in incontrollable pain, shortness of breath (eventually feeling they're drowning), liver failure leading to mental confusion from buildup of ammonia, kidney failures which causes huge problems with maintaining blood pressure and heart rate. It can happen very suddenly. There's no guarantee of a gradual peaceful happy decline

    Sometimes chemo at the end, especially lower dose, can smooth the decline and actually provide a better management of symptoms rather than like a falling off the cliff which can happen with no treatment.

    So again do not have regrets on this. It's not a simple decision and you made the best choice at the time.

    Allow yourself to be ok with your & your family's decisions. You did your best because you loved her best.

    My thoughts are with you & your family

  • YasirKhan
    YasirKhan Member Posts: 10

    Hi All

    With deepest sorrow i would like to tell to all those lovely people who supported me in this forum that my mother passed away last Friday on 4-Feb-2022....

    The gap which a mother leaves cannot be filled by any way possible and also what i realized that this gap what i felt was beyond imagination when my mom left and sadly not before maybe because i didnt do much more.... or maybe i just took it for granted till things felt apart

    During the last stages our Doctor told that your mother have developed a condition called "sepsis" due to super high infection which leads to multiple organ failure and ultimately the heart stops

    I just thank God that at least i was with her during her last breath untill her heart stopped, during this doctors tried to jump to do a CPR but i refused that there is no point in giving more pain to a person who have already beared so much of suffering.... maybe i am wrong here but there were so many things going in my mind at that time and i just said to myself that this suffering should just stop


    1 week has passed and it just feels like it was yesterday and day by day i just retrospectively recall and ask myself i could have done much better or maybe i could have taken a better decision? but even if i could make a better decision then what about the pain due to the cancer tumor, it was just one thing after another like a rolling wave...

  • obsolete
    obsolete Member Posts: 333

    Dear Yasir, deepest condolences to you & your family. Your brave & inspirational messages were touching. May you be blessed with peace & comfort. In prayer 🙏


  • rah2464
    rah2464 Member Posts: 1,192

    Yasir my deepest sympathies on your loss. God Bless you and your family.

  • rosiecat
    rosiecat Member Posts: 1,190

    Dear Yasir,

    Your mother has found rest and peace at last. She was blessed with a loving and caring son and she left this world knowing that she was loved.

    Yasir, please know that with stage lV metaplastic cancer there was nothing that you could have done except to be with your mum through her suffering. You were absolutely right to refuse any attempt to resuscitate your mother, it couldn't have worked and would have caused further distress and pain. Cancer is a cruel disease and metaplastic breast cancer is notoriously difficult to treat as chemotherapy has little success in shrinking tumours or destroying stray cancer cells. My own surgeon was very clear on this, so please be kinder to yourself. You did the very best you could.

    Your grief is very raw and your loss unbearable, healing will take time but it will come and then you will remember your beloved mother in happier times.

    I'm so glad that you returned here to let us know that your mother had died. I've thought of you and your mother and prayed for both of you. The people who come here will doubtless have done the same.

    Rest assured, you were the best, most loving of sons.

    With my love and prayers,

    Gill

  • salamandra
    salamandra Member Posts: 735

    I'm so sorry for your loss.

    You were in a situation with no good moves. You acted with love. Some things in life that's the absolute best we can do.

    May her memory be a blessing.

  • YasirKhan
    YasirKhan Member Posts: 10

    Thank you everyone for your blessings it means a lot, i want to say that the people in this forum are a gem and makes you feel like a family, its been 2 weeks as of today since my mother left us and it just feels like yesterday

    Time is indeed a healer in itself and of course reading messages in this forum made me felt that i am not alone, every family is going through huge stress of which you also share your worries and that exactly makes you feel lighter and in return gives you strength to keep going in whatever you can do....