Some clarification needed

[PrayForMyMom]

Hello,

My mom is staged-3 TNBC; invasive carcinoma of no special type (infiltrsting ductal carcinoma in-situ) . The lesion is reaching upto nipple with its heterogenous appearance. Periareolar skin thickening and edema is seen.

ER negative (0)

PR negative (0)

HER2 negative (1+)

ki-67> 80%

Bone scan shows no evidence of osteoblastic metastasis.

We have gone thru all the tests and approached Tata Medical Center, Kolkata for treatment.

They have advised 6- rounds of neo-adjuvant chemotherapy followed by surgery (not sure whether Lumpectomy or mastectomy) and radiation therapy post-surgery. I was not present when my parents visited the doc; so not sure whether the doc said anything about adjuvant chemotherapy or not. For a second round of opinion, I personally visited Tata Memorial Hospital, Mumbai and tried to reach out to Dr Rajendra Bhadwe, though I could not get his reviews but only managed to get Dr. Shalaka Joshi. Dr. Joshi advised me 4 rounds of neo-adjuvant chemo-> surgery (most likely mastectomy coz tumor size is relatively higher- apprx 5.1cm X 3cm ; but will be accessed post 4th chemo)> radiation + 4 rounds of adjuvant chemo. She said, the chemo suggested by Dr. Roshina Ahmed from TMC, Kolkata is in line with TMH, Mumbai's standard procedure. Its just that the numbers will be different and they are sugesting adjuvant chemo also (TMC Kol may or may not have suggested adjuvant chemo; so I will get it clarified soon from the doc). I suggested that we don't have any base in Mumbai and it may take a toll on my mom to visit Mumbai for chemos (each at a gap of 21 days; both in Mumbai and Kolkata). She adviced that they will prepare a schedule for all the 4 chemos and we can get it done from Kolkata. The same will be done for adjuvant chemos and radiation. So, my mom has to travel only once, during surgery. The below chemo round has been done this Monday.

Chemo Cycle 1st:

Tab Aprepitant 125 mg for 1st 3 days

Inj Painox 0.25mg

Inj Dexa 12mg

Inj 5FU 750 mg IV push

Inj Epirubucin 150mg in 100 ml NS over 10 min

Inj Cyclophosphamide 750mg in 200 ml NS over 30 mins

Tab Dexa 8mg for day 2,3,4

Tab Perinorm 10 mg TDS X 3 days

Tab Pan 40 mg OD X 5 days

Now here are few questions for which I am confused and would seek opinion of Sumeet sir and others:

1. Will it be advisible for us to get the chemo schedule from TMH, Mumbai since the 1st chemo has just been given (based on the advice from TMC Kol)?

We are planning to get the surgery done from Mumbai. So, will it be advisable to take chemos from kolkata (using the prescribed schedule of tata memorial Mumbai), since we have already got the first chemo based on kolkata's advice.

If we follow the chemotherary schedule from TMC Kolkata (all 6), will TMH Mumbai accept my mom for ONLY surgery ? Even if they do, is it advisable to do so, to take chemo prescribed from one place and surgery from another place.

2. I read on a lot of research articles that turmeric helps in BC, specially in TNBC, though it has to be completely proved. If yes, how much quantity of daily consumption is advicable?

3. Does the first 7-10 days, specially for 1st chemo have much more side-effects and if u pass those days, ur chances of side effects go down? By side effects, I mean nausea, fever, diarrhea etc.

4. If it is only a big tumor size with no metastasis, do it mean a better condition than the one with metastasis? I am lil worried coz its stage-3.

5. Mumbai doc told me that it would most likely be a mastectomy looking at the current size of the tumor( though they may change the decision based on the response of chemotherapy. Will choosing the mode of surgery impact the chances of recurrence?

6. Does TNBC cases really respond well to chemotherapy compared to others and no hormone therapy is suggested to these cases?

7. A family doctor (non-oncologist) suggested not to take mom out of house at all, except for treatment, since she would be highly prone to infection and her immunity will go down drastically in coming days. Is it really true? As far as I remember, doc Sumeet suggested a lot of ppl to do exercise/yoga. Is there a cooling period post chemos, when mom shud not go out of house?

8. Any specific fruit/diet plan? Does red beet fruit help to keep the blood counts in check?

9. If anyone has personal exp in Tata Memorial Hospital, does dr Rajendra Badwe still do surgeries? This is one of our main reasons for us for choosing TMH, Mumbai. Any exp with other doctors there like Shalaka Joshi or Nita Nair?

Regards

[bhavika23]

Hi I can understand d toll of chemo running away from one place to another. I'll try to answer a few questions since I m also undergoing treatment. I m 35 yrs of age. I had 6 rounds of chemo b4 surgery which helped a lot since my tumour was also big. It reduced to a size where I was advised lumpectomy.

If I can suggest u ...I will suggest u to go to Asian Institute of Oncology for surgery by Dr. DESPONDENT. ..ONE of d best surgeons in the country. There u will find all d best doctors in this field including Dr Advani.

As for chemo yes side effects subside after a couple of days. Plz don't confine Her to one place. Let her go out Bt not to crowded places. It will divert her mind.

As for diet I m no xpert but yes fruits like pomegranate help. Personally I also take vegetable soups or juices. Ñ this I have seen with a couple of relatives who suffered same thing. Also I take turmeric ñ black pepper combination once a day. I m not saying these things are fool proof Bt wat options we have. ..I try all things which I can to prevent myself from sch thing.

All d best ñ God bless ur mom!!

[kontak TeamBCI in reply to bhavika23]

Hi - welcome to our forum. Its really disturbing to hear about your mother. First of all please don't take tension - God is with us she will be fine. Yes during chemo she will be down for a week but again she will be back to normal slowly. During chemo lot of fluids should be taken - like coconut water, water etc so that the toxins can get out of the body. Pl read the pins given on the right hand side you will get answer to many of your questions.

Still any doubt we are always there to support each other. Take care and keep sharing

[anshul_15]

Hi.... I can very well understand ur problems and mental state.... me and my family also went through a similar situation before the start of Chemo. ....

I am not a doctor, so can't advice anything but from my personal experience I want to give just one suggestion.... go for ER PR and Her2neu testing again... many times results vary.... as it occurred in my mother's case.... and whole scenario and medication depends upon the report.....

and try to stay at a place from where u can easily approach hospital at any time.....

You may try to Google out NCCN guidelines.... This may help.....

and I am sure your mother would recover very soon...... All the very best ..... lots of love n prayers for her....

[Srishank29 in reply to anshul_15]

Hey anshul can you share what happened in your case.what er pr status you were talking about.my mother is also diagnosed with tnbc

[shubhac]

I am a TNBC patient. My tumor was stage 2 and I underwent mastectomy.

The principal drugs in the long list you've given are Epirubicin, fluocacil and cyclophosphamide. The line of therapy is obviously as per NCCN guidelines

I feel that it would be better to be flexible with the number of neo-adjuvant chemotherapy cycles depending on the response of the tumor to the drugs.

I also believe mastectomy would be better considering the staging, though

you have not given any information on the nodal spread.

Wishing your mother a speedy recovery.

[roxboxfox RadiationOncologist]

Breast Cancer is the top most Cancer in women worldwide and in India. Sorry for the delay in replying to a list of your questions, I ll attempt to understand and answer few of the questions laid down and perhaps Dr Sumeet will also join in once he gets some breathing time from his busy schedule.

1.Yes, you can get the TMH schedule Protocol, that is perfectly fine and possible. The protocols for FEC-T Chemotherapy are pretty standard and unfortunately as many people think, they are not created by Tata Hospital, but they come from Randomised clinical trials conducted in women from across the world in America, United Kingdom, Europe etc and they are tested in systematic way and proven to be effective and that becomes an acceptable chemo regimen. The Chemo protocol you received during 1st cycle is pretty standard, and that is the bread and butter for any Medical Oncologist. It is not possible to verify the accuracy of doses, as we would normally get the Height & Weight and then calculate the Body surface area. Based on the BSA, one would then calculate the doses of 5FU, Epirubicin & Cyclophosphamide.

In my opinion, getting the TMH protocol and giving it either in Mumbai or Kolkatta would not make any difference in her overall outcome.

You are a paying patient, you can decide where to have chemotherapy and you can decide where you want your surgery. Its completely your choice, that’s the beauty in India, whereas in UK and other places, there are problems and hurdles as you cant easily get your chemotherapy at Bristol and get operated in Cambridge. It is all under the NHS umbrella within their network, but the treatment is still all the same.

2.You answer the second question yourself by saying Turmeric yet needs to be completely proved. Hence no one on this planet with sound intelligence would ever claim confidently that Turmeric in TNBC is standard and at the end of the day its your choice. You can use Ramdev Babas tonic or Asaram Baapus tonic or Anna Hazares churan, its your choice, and not standard as per Oncologists view.

I do not see any harm in your turmeric approach but perhaps when you seek to ask about the quantity, I do get goosebumps as to how many kilograms would someone really recommend and perhaps I may have to scan the internet with the words TURMERIC POISONING And Management, to ensure this would not interfere with the chemotherapy treatment. Please inform your oncologist if you are taking anything on your own.

3.The probability of Nausea, sickness, vomiting is certainly higher in the first 3 days post chemo as its understandable that these chemotherapy poisons which have been injected inside the body, take time to exert their action, metabolize and do their stuff and finally come out of the body system via excretory or digestive system ultimately. Your oncologist has already very cleverly incorporated not one, not two but three different antiemetics to ensure the chemo is smooth and your mother does not have these side-effects. With modern medications, > 9 out of 10 patients are fine, provided they take the medications regularly as advised by their oncologist and there is no communication issue.

To assume that after 7-10 days you are completely safe, that is wrong. This is the period , when the chemo may have caused some damage to the body viz the Hematopoietic system as a result the blood counts may be low i.e the immunity may be low and you are susceptible to infections.

I m sure your Medical Oncologists would have explained to you all these risks of chemotherapy and be vigilant about any fever, etc and report it to doctor if anything goes wrong.

4.It is but natural that one has to worry because this is a Locally advanced Breast cancer Stage III, as the tumour is already 5.1 cm and reaching upto the nipple. This is a delayed diagnosis, and common sense would be if things are detected early, the outcomes are better ie Stage II, and perhaps if its detected at stage I, the outcomes would be the best.

What is hapened is happened, we cant change that...

Nonetheless, Breast cancer even at this stage seems curable and we could get the best international outcomes provided patients remain determined to see the horizon on the other side of the river, as your mother has just started the battle and there is loads of treatment, with surgery and radiotherapy yet to come in… Few times due to poor determination, lack of financial aid, people do get carried away and follow the Dark Path of Alternative Medicines (Dark Force as per Star Wars) , this is just so commonly rampant in Indian society, as just a small chingari can make Rama leave his wife, and Dashratha sending his son to exile. That’s where someone strong in your family needs to shield your mother and ensure the focus is right, as the path towards cure is difficult and tough, but not possible. Many women have done it , and so can your mother.

You will have hundreds to recommend their piece of advice, right from Gau Mutra (Cows urine) to Human Urine therapy, the ideas with people are endless...but thats not the advice from Oncologists....

5.The decision on Mastectomy or Breast conserving surgery is as follows:

In the western world, the patients chooses I want to preserve my breasts doc, and wah wah, almost 80% of women are able to do so with no detriment in outcome.

In a small minority of patients, would an oncologist claim and say, sorry I would not able to preserve the Breasts and would strongly recommend Mastectomy.

As a patient, you need to have your preference, otherwise let the doc dictate his own agenda.

During Neoadjuvant Chemotherapy, in the UK, it is mandatory for a surgeon to review the patient after every 2-3 cycles of chemotherapy as he is the one who is making a constant checkup making a final decision towards the goal of Breast conserving. In India, people want chemotherapy at one place and want an operation at another patient, this is not ideal, though perhaps I do not want to crush your blind faith in your goal of inter-state treatment.

Kolkatta have good oncosurgeons as well both at TMC as well as in Private setup in Apollo etc.

You have nt thought of Radiotherapy treatment yet….whether Mumbai or Kolkatta.

6. TNBC does not respond that well to chemotherapy as other breast cancer subtypes like Luminal A and Luminal B, etc. But still Neoadjuvant Chemotherapy is offered as it is better than not having any chemotherapy at all by 50-60%. Hormone therapy is not indicated as the cancer is ER - ve PR - ve , Hormone therapy is only indicted for ER +ve or PR +ve subtypes.

7.Not to take your mother at all may be an extreme step. Try to avoid public places, avoid cinemas, avoid public transport and if possible avoid unnecessary visitors. Avoid contact with any body with cold, infection etc. In UK, there was one lady who did exactly as your non-oncologist doctor suggested, despite that she got an infection and low counts. Many ppl are unaware that once your body immunity is down, one may self infect themselves. We all have organisms in out body cavities, which under normal circumstances have a good equilibrium Good bacteria Vs Bad bacteria. Once, chemo is given, this equilibrium may get discrupted and Good bacteria lower in number and thereby the Bad bacteria become outnumbred and they may cause riots resulting in Infection. Day 7 onwards till Day 14 may be considered as Vulnerable period. But there is no guarantee that Day 15 -20 nothing will happen, though that risk may be a bit less compared to the vulnerable period.

8.Healthy Diet and Healthy Food is always a bonus and perhaps I d be greatful if someone from the forum can elaborate this aspect, as there would be many to give their personal take and message.

9.I do not have any personal data from literature or anything published about the surgical outcomes of One doctor over another from INDIA. In the UK, that trend has just begun in the last few years, where the morbidity and mortality figures of surgeons are now available in public. In India, all what I can say is get your mom operated in a reputed cancer centre under an Oncosurgeon with a qualified degree.

Sonia Gandhi would like to get any operation only at Memorial Sloan Kettering Hosp in US

V P Singh would want only his treatment at UK centre. That is the choice people have.

The outcome of their condition is no different at the end of the day provided its done by someone experienced.

The reason our results are low, is because not 100% patients would stick on this path you have been shown….that is chemo---Surgery --- Radiotherapy…. Few pts do deviate …

You can certainly check Tata Memorial Hospital website and check list of operating oncosurgeons.

Best of luck to your mom who I m glad has already begun her journey to beat Cancer without much delay.

[PrayForMyMom in reply to roxboxfox]

Thanks a lot sir, for a very detailed information. It surely does help.

[MsLockYourPosts TeamBCI]

It will be important to follow your mother's absolute neutrophil count and if it is low to discuss a neutropenic (low bacteria) diet with her doctors. If you google neutropenic diet there are several sites that explain what can be included and what should be avoided.