Triple Negative breast cancer; Recurrence; now Stage IV MpBC
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:
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
- 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)
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
- I just cannot understand that how in the world within 7 months there is a recurrence after such a heavy treatment (phase 1 above)
- Even if there is a recurrence, then such a huge necrotic mass is developed in the right arm pit?!
- Even worse, the recurrent cancer have evolved into a Metaplastic (MpBC) breast cancer as if triple negative itself was not enough!
- Line of treatment? none? only palliative care?
Learning Curve (which i failed to do for my mother) :
- Do not take any kind of breast cancer lightly,
- Research about the Oncologist who is specialized in breast cancers, make a well informed decision and take the appointment and stick to that doctor
- 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
- Take a deep dive and do a thorough research of your own and be aware of the technical terms
- 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
- 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
- The dx testing sequence for any cancer should be as follows
- Biopsy/ FNAC of the suspicious cancer site- to determine weather there is malignancy or not
- Immunohistochemistry (IHC) test to identify the hormone receptors
- This IHC test will tell you against the 6 to 10 marker scale assessment that weather you are ER+/-; PR+/-; HeR2+/-
- For further clarity, a FISH test is also recommended
- 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
- This test will guide the rest of the treatment plan weather you will undergo chemotherapy or hormone therapy
- 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
- 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!
- 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