Staging of cancer

[Supriya-s]

Hi doctors,

I was diagnosed with BC in Qatar, had my chemotherapy course there, came to Bangalore for mastectomy with primary reconstruction and am now undergoing radiotherapy here. I am not sure, if it is because of treatment at multiple places, but I have never got information about the stage of my cancer. Not when it was first diagnosed and neither when it was pathologically examined post mastectomy. I asked my medical oncologist who told me "early stages" in one meeting and "maybe stage2" in the next meeting. My breast surgeon said that they hadn't staged it. She was pretty vague about it. How can I get this information? Is it true that I needed to get a pet scan to know this? Is it purely academic or is there any other purpose in staging of cancers? Can the lack of this information affect my future medically since I am planning to move to another country soon yet again? Completely confused and feeling a little cheated by the medical system.

[sumeet_shah Administrator]

PET is not necessary for staging. It is only to rule out any distant spread. The staging in done by histopathology report. Planning of cancer treatment comes only after staging. Only when we stage a cancer do we know how to treat further. You can request your radiation oncologist to see details and explain it to you.Just for your knowledge, staging is done by the first doctor who treats you, be it a surgeon or Medical Oncologist or anyone. Once treatment starts, it difficult for any other doctor to later assess and stage, though they can, based on findings written by the first doctor who treated.Your breast surgeon was not sure, because, you completed chemotherapy first in Qatar and then came here. How would they know the clinical attributes of the original tumour on first day of treatment, since after chemotherapy, the tumour will have gone down in size.

One more thing. Its very easy to generalize. I too get patients who are unkind to me after I give them more than half an hour of consultation time and show them images to make understand (Just FYI, very few doctors do that). India is full of such patients who will swear by alternate treatments and spill venom on us doctors. But I do not generalize. I do not say all patients are bad. When you mention 'cheated by medical system', it is unfortunate, that your one doctor in Qatar may not have done properly and you are spilling the blame on all doctors in India, by labelling - "feeling cheated by medical system". Such responses are not expected from good people.

As for your questions, you will need to sit and discuss with your radiation oncologists.

[Supriya-s in reply to sumeet_shah]

Thank you, Dr. Shah. I have only written praises of my doctors here in India in my earlier posts. They treated me well - gave me personal attention and cured me of cancer as much as possible with a disease like cancer. I don't have anything against individual doctors. And i can understand your angst to read such a post from me. But I seem to have slipped through the cracks of the system in this one regard. That's the very reason I have said medical system not any individual doctor. It's not like i haven't asked this question to every doctor who has given me any sort of care - breast surgeon 1, breast surgeon 2(in Qatar who is a very senior doctor and has been kind enough to answer all my questions except this one), medical oncologist, breast surgeon 3. I even tried to reach the pathologist who made my histopath report. But I was told I cannot meet the pathologist and all questions must be directed to my breast surgeon. But so far, no one has been interested in giving me an answer - though everyone else i know who has this diagnosis has it. So either they are not sure - I may not be able to be pegged into a category - being T2N1M0 or they have just not thought it important. But as a patient, I have a need to know and may I say a right to know? Why is that not important? And doctor, i doubt my radiation oncologist will be able to help since again she is a late entrant to my treatment. But since you suggested it I will ask her.

Thanks again. I am sure you don't let your patients go without giving them all the information they need.

[roxboxfox RadiationOncologist]

Let me break this Ice...which seems to be hurting your soul for so long. You have Stage IIB as per the American Joint Committee onCancer staging system (7th Ed).

You have been very appropriately treated with Surgery, Adjuvant Chemotherapy and currently Radiotherapy. These are standard modalities and u have nt missed out on any. You have been given world class treatment which any other women would have received in America, Argentina or London...these treatments remain the same.

You should be graceful and consider yourself lucky to have come out with flying colours from your fight against Cancer...and we would salute people like yourself who will shortly be classified as a Brave Cancer Survivor.

Try and forget the past..try not to dig in the past...and open a Pandora's box...and perhaps utilise u r energy on something positive.. perhaps create awareness about cancer in Qatar..or help some cancer patient or any such act which is noble ..... Remember u r luck and u r unique...God Bless.Take care...Enjoy and Live life

Dr Rohit Malde MD, DNB, FRCR (UK)

Consultant Clinical & Radiation OncologisT

Nanavati Hospital, Mumbai

[Supriya-s in reply to roxboxfox]

Thanks, Doctor Rohit. I had worked that out myself and I'm glad to get confirmation from someone like you who is actually qualified to tell me that rather than an internet researcher like me.

I do consider myself lucky and am grateful for all the efforts of all the doctors and my family due to which I have been able to go through this journey of my life.

I have even written recommendations for all my doctor in various websites.

I will explore helping other cancer patients more actively. Thank you for the advice.

[Sherna]

Dear Supriya, i entirely understand your frustration and angst. It is obvious from the queries that the reason many of us are on this forum is because we are not getting the full information we require from our doctors. Mine have been very nice and i think i have got excellent treatment (Mastectomy, chemo, radiation, hormone therapy) in a top hospital in Mumbai, but i keep feeling i do not know the full extent of my condition.

Reports were never explained in any detail; only told if it was good or bad. My surgeon was good but very meagre with details about my condition. i found out many things by going on the net. As for giving one time for discussion, Dr Shah, you must be the exception in giving a full hour to your patients; mine is so busy he can barely manage five minutes in follow up sessions and i don't think I got more that 10 minutes after my biopsy results came in and about three minutes when my frozen section analysis report came in. This does not reflect on the quality of treatment I got, merely on my right to full information about my condition.

[Supriya-s in reply to Sherna]

Thanks for responding to me, Sherna. I was really feeling I have been very ungrateful to doctors. You've explained it so well. It is exactly how I have felt. Though my doctors did in fact give me an hour each time - somehow they just didn't answer this question for me.