Triple negative Breast cancer reoccurrence and treatment

Harpreet1Harpreet1 9 hours ago 0 Replies

Hi this is Harry,my sister is 34 and she had breast cancer in one of her breast last July 2016. As soon as it was diagnosed, bcs was done. Then we came to know it was a triple negative Breast cancer and had her nodes affected too. Then chemotherapy (Taxol,4+4) was done followed by radiotherapy(30). The chemotherapy got over by 30th December 2016. Radiotherapy was over by March 20th 2017. The cancer has come back in her other breast and we only got it confirmed yesterday. We have been advised a PET CT which will be done tomorrow. We all are so shaken and want to know the further line of treatment that needs to be given. We have now get her BRACA 1/2 done. Results are awaited... Please advice.

Thank you

Harry

India

17 Replies

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  • hi harry. I am a layman, but the chemotherapy regimen the first time around seems lacking. WHY did they not use FEC (5 fluorouracil (also known as 5FU), epirubicin and cyclophosphamide OR the other option, an Anthracycline, following the Taxane (Taxol). The treatment provided to your sister is not standard regimen, and you really should consult with a top breast specialist (another doctor specializing in breast health) - and share the treatment history with them).

    Yes the Petct results and the BRCA results will help guide you towards further treatments.

    If the BRCA test comes out either BRCA 1 or BRCA 2 positive, then you should discuss adding a Platinum such as Carboplatin or Cisplatin to your other recommended chemotherapy regimen. Since she has already completed using the taxane I am not sure if they will use a stronger taxane such as nab-paclitaxel, doxirubicin, or if they will go with other combination chemo drugs.

    Just know that when she was first diagnosed, she should have gotten 4 dense dose bi-weekly (or 12 smaller doses weekly) of a Taxane (such as taxol), followed by 4 dense dose treatments using FEC or an Anthracycline. Why your doctor did only Taxol 4+4 and then 30 Rounds of Radiation is incorrect and is not as per standard treatment for tnbc.

    If the taxane was not working then the other chemo therapy regimen following the taxane may have worked. As your sister had BCS (Breast Conservation Surgery), before chemotherapy, she had what is called Adjuvant Chemotherapy. Sometimes doctors leave the tumor in the breast and do neo-adjuvant chemotherapy so they can monitor if the tumor is shrinking, but perhaps your doctor did this because the tumor was very small, or it was too large - I do not know. But some doctors do Adjuvant Chemo, and some do Neo-Adjuvant chemo, for various reasons, which can be discussed for this recurrence with a top specialist.

    Also, talk to a TNBC specialist or at least a breast specialist at a leading Indian hospital (get a second opinion). I would not trust the 1st doctor based simply on his regimen used - it is not even what is the Global Standard, and the Global Standard is also used in India by the best specialty hospitals.

    The tnbc coming back could happen even with standard treatment, but the regimen your dear sister received is not enough and it is not as per Standard International Guidelines.

    Please consult with a better breast doctor at a bigger hospital (Tata Memorial, Jaslok, AIIMS Delhi, Fortis, or another large hospital with top breast care, in your city).

    The Petct will tell you if the cancer is limited to the breasts. IF that is so, then it is good. But either way, you need a second opinion and you need to see a more specialized doctor immediately.

    All will be well. You can read a lot about treatments and other issues on this site.

    tnbcfoundation.org/

    Also you can talk to Sumeet Shah on this forum. He will let you know if the therapy she received initially was appropriate or not, and also what she should do when she gets her BRCA results and her petct back. Be aggressive and work with a specialist as TNBC requires the best and aggressive care. TNBC needs the best clinicians care and guidance. You cannot go to some doctor that is not an expert in the field as it is not just a standard cancer nor is it a standard breast cancer. It needs specialized and aggressive attention.

    God bless you, your family, and your sister.

    made2b2gether.

  • Hi, thank u so much for your advice sir, I would like to update the present situation since the beginning till date please..

    My sister is 35 and she had breast cancer in her left breast diagnosed in July 2016 and she was 29 weeks pregnant. As soon as it was diagnosed, bcs was done and we came to know it was a triple negative Breast cancer with 14 nodes affected and then chemo was planned. The water bag burst and an early delivery was done. Baby was back home after 70 days as there were many complications. With God's grace the baby girl is fine. She received one chemo with the baby in the womb, Then chemotherapy(AC,Taxol,4+4) was done followed by radiotherapy(30). The chemotherapy got over by 30th December 2016. Radiotherapy was over by March 16th 2017. The cancer has come back in her other breast and we only got it confirmed on 14th April. It's again a Tnbc with nodes affected. Braca1/2 is negative and MCI done from the US has not been of any help in getting onto some conclusion. Chemo(carboplatin and Abraxin) is being given since 20th April 2017 weekly. We are looking for and alternative therapy such as immunotherapy and all. unfortunately in India there are no clinical trials going on. Now what the doctor plans is giving Carboplatin and Abraxin till when ever it is beneficial. And then from once a week he plans giving once in 2 weeks for one month and then once in 3 weeks for 2 months and will keep monitoring through pet ct and other tests,Only a day before the Liquid Biopsy report has come and the doc says he got a clue that immunotherapy could be beneficial and he could use Keytruda. I went to Mumbai jaslok hospital and discussed all the reports with Dr. Suresh Advani and he said the treatment was going fine as he also suggested 22-24 chemo of the same drugs to be given first as it showed a significant benefit in the latest Pet ct. We also consulted at Tata memorial and there too the above treatment was given a go ahead by the doctor there...

    We all are praying and hoping some maintenance drug clicks..

    Please advise further...

    Thank you so much for your support...

    Harry

  • OK. I am not a doctor. Just a husband. First, it is important to know after the recurrence, is the cancer limited to the other breast and to the lymph nodes? What does the Petct say? It's important to check and discuss with your doctor.

    Is Surgery and Radiation an option again if the cancer has not metastasized?

    As your medical team lots of questions.

    Ask if you can test for PD-1 as that is one prerequisite for using Keytruda and Immunotherapy, sometimes. I do not know the other prerequisites.

    I do not understand what you mean by MCI in the USA, but I assume Molecular / Genetic testing?

    Dr. Advani at Jaslok treated a friend of mine and he is a top doctor. But if the Cancer has spread / has metastasized, then you surely need to get a 2nd Opinion and try a different approach where feasible. Also, they should measure her response to the Carboplatin and Abraxane using Ultrasounds or other more accurate testing to measure if there is any shrinkage. I do know that both Carboplatin and Abraxane are good even in NON- BRCA TNBC, but she would need to be well monitored to monitor shrinkage.

    If the chemo is working and the cancer is not advanced (Stage 4), then you really need to see if the current regimen is working. Jumping to Immunotherapy could also be a risk as there are no guarantees, so you must discuss with your doctor in detail, carefully evaluating risk vs. benefit.

    Molecular Testing / Genetic Testing may match her for Clinical trials, especially if the Cancer is advanced and if she fits the profile for a trial. If Jaslok can do the PD-1 Testing and also do some further testing with Foundation One or Molecular Health in the USA to guide further treatment (continue advised treatment whilst the results come), then maybe you should do that. But note that most such trials are in the USA. I think there are several trials in the USA, and she may even get the treatment outside of trials. There are also trials in Singapore and in Japan, but the USA may have a lot more locations state wide.

    I reside in Japan and if she is PD-1 Positive, I know doctors that can give her the treatment at a cost that is substantially lower than the USA. The new treatment is no guarantee as the Immunotherapy and Keytruda has shown success in types of melanoma and in small cell lung cancer, but if she has a PD-1 Status she may qualify for the drug. That is the prerequisite in the only trial that I know of. But as you know, in trials you sometimes do not get the actual drug, but the placebo.

    I do not know why Dr. Advani of Jaslok feels that she is a good candidate for Keytruda, but he must be basing this on something, as he is a professional. Ask him specially why? Is it due to specific biology of her cancer? Why?

    If there is a clear reason why he says so, then you have to weigh the risk vs. benefit and also speak to another specialist for a 2nd Opinion before you go with the next step, so you do not regret any decision (better to make sure).

    Again, I am a layman. . My wife too had tnbc at 28 and so I have a little half baked knowledge.

    I would be happy to talk to you, but as a friend, not because I know anymore than your doctors, who you should trust (as long as they are TNBC Specialized and well read on what is going on abroad with TNBC).

    On this site you will find a lot of useful information; Join the site if you have not already.

    tnbcfoundation.org/

    Best bet is first, test for PD-1. Also check for AR status - Androgen Receptor Status. Then talk to top TNBC Specialists on further testing and a strategy for the next line of treatment (if the current line is not showing stability or shrinkage).

    AR Status and tnbc;

    onclive.com/web-exclusives/...

    Also check to see if the current regime of chemo is working with scans and checks every 3 weeks. (as you need to know when you may need to take a different approach).

  • Hi,

    Missed telling that when it happened the second time in April 2017, it was in the right breast and FDG avid subtle *lytic* lesion was seen in the left iliac bone. For that xgeva is being given once in 4 weeks. So now it was MTNBC... But the latest Pet ct has shown a considerable improvement in nothing the breast and the bone also...

    Thank u

    Harpreet (Harry)

  • Dear Harry,

    Please go through the chemo details and try to.understand what is 4+4

    Some ppl may be surprised that Anthracyclines were used.

    If you still have doubts seek second opinion from an oncologist, but not online......

    In my opinion, she has been treated adequately and it's rather unfortunate that a second Metachronous Breast Primary has been detected in the contralateral breast.

    Your oncologist has the sufficient expertise to know and ask for BRCA testing and should this be positive

    The fault lies in the genes and not the Oncologist treating you.

    Your sister has triple negative cancer and every layman knows that this spells bad prognosis and indicates high likelihood of disease coming back soon.

    Hope that PET CT scan shows no evidence of spread elsewhere and quick recovery for your sister.

    My wishes are with you in this difficult times.

  • Harpreet Our prayers for your sister. Do as Dr Rohit has guided you

  • Dear Harry, this is NOT a re occurrence. This is a new cancer developed in other breast. A breast cancer CANNOT spread from one breast to the other breast. When someone gets a cancer in the other breast, it is a NEW cancer which has developed probably because of underlying genetic defect or any other reason, and is known to occur in Triple Negative Breast cancers. Many people have a genetic defect causing one breast cancer. Even though the treatment has happened, we cannot change the genetic defect; and it causes the cancer again in the other breast; or sometimes in ovary or elsewhere.

    So don't worry, since this is a new cancer, your sister will be treated and will soon be fine. Just follow your oncologist. Trust him.

  • Harry, yes, go with the current regimen if it is showing good shrinkage and ensure that it is continuing to work. Sure she can do periodic Petct's as the doctor recommends, but be vigilant and ask for an Ultrasound of the breast every 3 weeks to note changes (the ultrasound frequency can be decided between you and your doctor, and it is more inexpensive than a petct. Either way, the Petct's should be done as advised, on a schedule) to guide you on how the current treatment regimen is working and if and when a treatment regime change may be needed / required.

    Also report all symptoms / reactions to the chemo, uneasiness or pain that your sister is feeling on treatment (write it in a diary). By sharing all the information with your doctor, they can prescribe medicines to make things easier for your sister. So it is very important to note everything and work with your treating team.

    Also test for PD-1 and AR (Androgen Receptor). This data / report may not come in use immediately, but it may be useful at some point, so have the testing done, and keep the reports on file. Stay in close touch with Dr. Advani / Jaslok or other TNBC experts who are well aware of what is happening abroad.

    Just ensure your sister is in good spirits, is eating well, and is taking in plenty of water and fluids. Stay in touch with leading experts on leading trends and ask lots of questions so you can be an advocate to help guide your sister.

    Trust your oncologist and like Sumeet said, all will be fine. Have faith. God bless your dear sister. Take care of yourself too Harry.

    Best,

  • Hi,

    Thank u, yes we are doing all what you have suggested and it's your advice is very encouraging as it makes us believe we are on the right track. I got the liquid biopsy done and going to share all with Dr. Advani. We have got some very important clue from this biopsy and before we go on to the next level of treatment, that is the maintenance part. I will again take 2-3 opinions from the top docs...

    Thank you again for your advice.

    Harpreet (Harry)

  • All you can do is your very best and share a lot of affection. Hope your doctors guide you well and the current regimen gives her good shrinkage. Take good care! Hope the added clues are also helpful. The disease is complex, so best to work with the most specialized physicians for good guidance. There is no miracle treatment here- although some people respond better than others. Each patient is an individual. So do your very best and keep your dear sisters spirits high.

  • Hi,

    Thank you for all the blessings and advice.. I really value it. I am a firm believer and I do believe in miracles and also believe that even Miracles need time to happen... My cousin,45 is the only survivor in the Asian region who was born a thalisemic... After 21 years he got treated and is perfectly fine. God bless him...

    God bless all

    Thank u so much :)

    Harpreet (Harry)

  • I am no doctor, but I believe that with a triple negative breast cance, the chances of having a recurrence or a new breast cancer are high. The doctor, along with chemo should have advised a preventive bilateral mastectomy. I defer to the doctors here for solid advice.

    I am BRCA 1 positive. If you or your sister need someone to talk to, please feel free to connect via private message.

  • Hi shikha,

    Thank you so much for your reply and concern. My sister is BRCA 1/2 - ive. I am doing all the research and interaction on her behalf here as well as with the doctors. I don't want to involve her much in this as I want her fighting spirit to be intact and I would like to here why you have suggested a bilateral mastectomy and on what basis please because I also discussed this with the doctor but he did not agree to this...

    Thank you

    Harpreet (Harry)

  • Hi Harry. Every case is different and if you have already discussed with your doctor and the doctors here didn't see the need for it, then she may not have needed it. In my case, my doctors had strongly recommended me as I was triple negative, stage 3C and was tested BRCA 1 positive.

  • Hi,

    Agreed, they too would have considered it if BRCA 1/2 would have been positive....

    God bless

    Thank u

    Harpreet (Harry)

  • Hi Harry / Harpreet,

    This may be of interest to you.

    oncnursingnews.com/web-excl...

    Desh

  • Hi Desh,

    Just got up, getting ready to go to the hospital for my sister's chemo session.

    Thank you so much for this link and your concern. Will just go through this right away. .

    Thank you🙏

    Harpreet (Harry)

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