AT THE 11TH OF THE INDIAN BEST CANCER SURVIVORS CONFERENCE ON OCT1-2 AT ICG GOA…a panel discussion on “Can Complementary Help?’ moderated by Deveika Bojwani with Dr Ghanekar, Dr Yogesh, Dr smita Gaekwad and Dr Shree Inamdar. moderator Deveika Bhojwani is the vice president of Women’s Cancer initial at Tata Memorial Hospital; Elsewhere Cancer survivors discuss and exchange notes about what experiences breast cancer throw up…and how to tackle them.

By Pankajbala R Patel

If you’re a woman you better be alert to the symptoms of breast cancer, for there’s not much fun being a cancer survivor – although cancer survivors have a great attitude of gratitude and sense of humor! TARA NARAYAN spent some time talking to cancer survivors at the two-day 11th edition of Indian Breast Cancer Survivors Conference which took place in Goa on Oct 1-2, 2023 and which was addressed by oncologists, doctors and all those concerned about the growing incidence of breast cancer in India led by the small state of Goa…

FEAR is a good thing sometimes. Women live longer than men generally and therefore their risk of breast cancer is higher, especially if they’re been living the fast paced urban life of a working woman – in the same rat race as men to earn as much money as possible so that there are no financial worries when it is time to retire and go off for that cruise to Iceland or Artic Circle or wherever one wishes with loved ones!
It is true that in a country like ours women do double duty in modern urban scenarios – see to the housekeeping and children as also parents and in-laws very often, as well as work in a regular office. Nuclear families today are necessarily double income families with both partners earning to afford the good life of today’s demanding times.
Women are educated and though their parents pressure them to marry, marry, marry early in life – they want to work first, be financially independent, they’re very much their own women and think who they marry is important enough for them to respect and/or love. It’s no longer like “I want to marry by hook or crook!” Marriages are no longer an urgent affair like they used to be in today’s fairly enlightened time.
Women bide their time to marry in their 30s or 40s and even when their biological cycle is ticking over to a slow close. Women are marrying later than ever and having their babies later than ever and many think of preserving their eggs in a fertility bank for later pregnancies.

CHANGING SCENARIO
AGAINST this scenario we see how stressed out women may be torn as they between the key decisions of life and in the process of living their fast lifestyles — just like men to be on par with them — invariably, their health suffers and married or not, divorced or not, with children or not, one not so fine day they may wake up no longer able to ignore that inverted left breast nipple or that terribly inflamed nipple area, or the pain under the arm which feels like a tumour. Damn it, why wait for pain to knock you out before you do something about it? Women do it all the time and especially “stupid Indian women” (to quote one cancer survivor).
Hell’s bells may ring quickly or as in better later than never, too late; depending on their priorities which are usually to do with family and jobs which come first. The very first stage symptoms of what could prove to be cancer later on are usually ignored and only when severe pain hits the patient at second or third or fourth stage does she talk about it and go to a doctor post haste then! Cancer spreads depending on what kind of a cancer it is and even in breast cancer there are several kinds, slow-spreading or fast, aggressively spreading cancer…so do not ignore your body’s signals, see a doctor sooner rather than later as it happens only too often with women for one reason or another.

11TH EDITION
TALE the case of Lynette D’Souza from Pune who was at the 11th edition of the Indian Breast Cancer Survivors Conference in Goa which took place at the International Centre Goa from October 1 to 2, 2023. There was a talk on lymphedema – lymphedema is something cancer survivors may have to deal with post-surgery, chemotherapy and/or radiotherapy, when the cancer has spread to the lymph nodes and these have to be surgically removed, setting off a chain of distressing side-affects to cope with. In fact, lymphedema is a huge issue with cancer survivors.
Shares Lynette, “In 2016 I was diagnosed with breast cancer in my left breast and it had spread to the lymph nodes, it was phase three and I had to do a mastectomy which is removal of the breast…” For some time she had noticed inflammation around the nipple but ignored it, “I was afraid about my family, my job as an accountant, I wasted six months! I suspected but it was all about kya hoga, fear of losing my job, my family depended on me….”
Then when the pain hit her really badly under the arm she had to go to a doctor, it was one thing after another like a roller coaster ride, “And if I am alive today it is to the grace of God and the doctors who treated me at the Pune Sahayadri Hospital where the doctors are very good.” She also got a lot of help from the Nag Foundation which is doing very good work helping breast cancer survivors deal with post-breast cancer traumas and rehabilitation.
She Lynette, “Today I’m okay (despite the lymphedema of a swollen hand which she is now treating with special compression bandages, etc)…yes, I resumed my job, but my boss soon gave me three months’ notice to leave.” She regrets her negligence but she tries to be positive spirited and trusts that things will sort themselves out progressively.
Most breast cancer survivors are upbeat because the worst is over and now it is only about taking better care of themselves, which many never did before! For some of them it’s not been such a bad experience. Take Kanchan Vindhya from Santa Cruz, Mumbai, who shared, “I’m 48 years and am married with two children. Last July I got this scare of my breast nipple being inverted and I knew something, I quickly googled and found it could be a cancer symptom, so I went to my doctor who said do sonography, mammogram – I went to BMC Cooper hospital at Pale and later Mahatma Phule Charitable Trust General Hospital in Sanpada in Navi Mumbai and the surgery to remove the tumour was done.”
Later Kanchan did 12 chemotherapy sessions at Tata Hospital in Mumbai and it was all smooth, thank God no surgery was required and the treatments didn’t cost her so much because it was mostly charitable trust paid treatment. She is fine today and back to the business of taking care of the small general store run from their home to earn the family livelihood. She was at the conference for follow-up advice and knowledge to make sure she continues to be in remission; unfortunately, she rued, “Yeh sab talk English mein hai aur humko Hindi ya Marathi samaj mein aati hai!” (Which is not really true for several sessions at the two-day conference most doctors spoke in English and Hindi alternately and some of the Nag Foundation representatives like Rebecca were eloquent translators for many the cancer survivors who had come from Mumbai, Pune, Goa.
Sixty plus cancer survivor Kameshwari Murthy is director of IGNOU regional division in Goa, she offered a lively smile and shared, “I consider myself now cured!” Which is actually a very hard thing for cancer survivors to say for most fear that the cancer will return! She says, “I made changes in my diet and eat less rice now, stopped sugar completely. I am born a vegetarian…at first I used to think post-treatment will I be able to work, will my clothes fit me, what if I get lymphedema. One has to be very disciplined and strict with all these things…but I’m cured now!”
Kameshwari was diagnosed with malignant breast cancer and nowadays doctors do conservative breast treatment and don’t remove a breast if they can save it. Only the malignant tissue is removed in surgical prosedure (tumors are a kind of calcification in the body). As in her case her left breast was the problem and since the heart is on the left side there is the fear surgery and treatment may impact the heart too. With chemotherapy she lost her hair, with radiation therapy the skin turns dark, but these are passing passes and energy returns sooner or later with new ways of learning how to be grateful that it was not as bad as it could have been!

CANCER MEDICATIONS
BREAST cancer survivors are on medication life-long (for example, Tamoxifen which is FDA-approved) and some may have side-effects. If infected lymph nodes have been removed lymphedema may result as the body finds new ways to remove body waste. Post-surgery the hormonal system too may go haywire and it’s no fun for cancer survivors have to learn how to cope with a new way of living with one breast (unilateral mastectomy) or both breasts (bilateral mastectomy) gone.
Radical mastectomies may benefit from some useful micro plastic surgery later on to help restore balance and confidence in breast cancer survivors, and needless to say here that in all cases the support of spouse and family play a vital role in the journey back to leading a normal life anew. In a session addressing the issue of “Sexuality & Intimacy” Dr Shivani Jain counselled that communication is the key to ease any apprehensions.
For many of the younger or even married women there is always the fear that post-surgery their sex life will suffer for many a husband, though sensitive to his wife’s “new” body image of being a breast cancer survivor, usually hesitates to return to a normal relationship until reassured that it is okay to have sex comfortably (some issues such as vaginal dryness may be resolve with the use of very good lubrication creams and a change of sexual position). With communication just about all issues may be redressed with minor adjustments not too difficult to make.

USEFUL CONFERENCE
ALTOGETHER this was a remarkably enlightening and useful conference for breast cancer survivors. There were 35 participants from Mumbai, 45 from Pune and 25 from Goa. All of them were updated courtesy talks to do with recent advances in the medical management of breast cancer by Dr Mandar Nadkarni, management of breast cancer by Dr Shona Nag, mental health by Rebecca D’Souza, complementary therapy (a session moderated by Devika Bhojwani, vice president of Women’s Cancer Initiative, Tata Memorial Hospital), eating for a healthy lifestyle and other issues. Participating breast cancer survivors shared notes with one another and took away many take-home messages on how to be positive – despite the trauma of being breast cancer survivors.