UNITED: Togetherness at the first ever Indian breast cancer survivors conference in Goa…interestingly, several of the cancer survivors think of their cancer experience as a blessing which has made them better humans!
A conference like The 7th Indian Cancer Survivors Conference does an excellent job of educating and helping women recovering from the trauma of post-surgery cancer survivors. There should be more such cancer survivors conferences although this one is limited to only breast cancer survivors! This year the venue of the conference was the International Centre Goa in Panaji from September 7 to 8, 2018. This is the first time it took place in Goa, which has a high incidence of breast cancer. By Tara Narayan
IT was a question which came to mind during the two-day talks, workshops and deliberations of the 7th Indian Cancer Survivors Conference in Goa on September 7 and 8, 2018. Do more well-to-do urban women suffer breast cancer? No one has done a study about this but it does look like the urban, more well-to-do, upper and middle class women who are more upwardly mobile who seem to be victims of breast cancer.
Today, the word cancer no longer horrifies because it has become a household world, although many cancer patients and especially women cancer patients still think the `big C’ is a bad word and once the news filters in most families want to have nothing or little to do with the woman! Family feelings and thinking plays a crucial role in whether a woman breast cancer patient recovers fully or continues to suffer from the trauma which may well be called cancer trauma.
When it comes to a complex, many-layered and individualized disease like cancer many factors come into play and doctors and cancer specialists or oncologists will tell you the chances of full remission of cancer, including breast cancer are very good the earlier it is diagnosed and treated with surgery, chemotherapy, radiation, medicine — not necessarily all of them but depending on the diagnosis of the cancer.
The conference was attended by about a 150 breast cancer survivors — 40 from Mumbai, 36 from Pune where the Nag Foundation (represented by Dr Shona Nag) is based. Dr Shona Nag is the driving force behind this annual conference and is both an oncologist and trustee of the foundation. Others associated with this year’s conference in Goa were the Goa Cancer Society represented by Ms Pallavi Dempo, Gokarna Oncology Associaton and Manipal Hospital Goa represented by Dr Shekhar Salkar, NGO Muskan represented by Babita Agarwal and a Tata Hospital-associated cancer initiative represented by Devika Bhojwani from Mumbai. It was a remarkably heart-warming experience to talk to some of the breast cancer survivors.
Most of the women were in their 40s, 50s and even younger. Some of them like the lively Sunita Mohan Arbune from Pune, who is 55 years old, said, `The lump was just the size of a moofali (peanut) in my left breast when it was diagnosed in the month of April in 2015… “The biopsy was done and sent to Tata Cancer Hospital in Mumbai, since the tumor was only one-centimeter, a Dr Hegde did the surgery at Ruby Hall in Pune and Sunita’s left breast was totally excised along with lymph nodes.
Sunita said she was very disciplined when it came to doing post-surgery exercises recommended and of course her family was blessing, `My husband still does massage for me daily!’ It’s been three years now, post surgery, eight chemotherapy sessions, 25 radiation sessions, `My skin turned white and nails fell off, bal bi safed hogaye, you don’t mind if I talk in Hindi? Now I feel like I have been born again!’ She is the principal of a Zilla Parishad primary school in Pune.
Yes indeed, continued Sunita, happy to talk, `Mein yoga karti hoon or ten rounds chalti hoon daily, I’m vegetarian, and have a 22-years-old daughter…meri liye Nag Foundation ke Dr Shona toh devta yaa devdhoot hai….’ She is also a vegetarian although vegetarian women too get breast cancer! She thinks it is because she is disciplined in post-operative care which is a lifelong treatment that she has not suffered from lymphedema — which many breast cancer survivors suffer post-surgery when the affected cancer-stricken breast is removed along with affected lymph nodes. Lymphedema is something many post-surgery breast cancer patients have to cope with.
Most of the women at the conference consider such a breast cancer survivors’ conference a boon and a blessing and echo Sunita in what she says, `We get positive energy and cancer bajoo hojata hai (cancer is forgotten or sidelined)’
Vrida Travora from Goa recounts how her `tiny lump in right breast’ was discovered in 2006, `but since I used to read a lot and was conscious breast cancer I quickly went to my doctor and a biopsy was done. They said it was very early stage but diagnosed it as a multi-centric one-cm round lump and a mastectomy had to be done, the entire breast was removed with lymph nodes too…they do something call a frozen section test which enables them to decide if lymph nodes are affected or not, the decision is taken while on the surgery able itself.’
But that was it, `They removed my ovaries too to be on the safe side but I didn’t have to do any chemotherapy or radiation treatment…but two surgeries were done on me in a month time, first the lumpectomy and then the mastectomy and ovary removal which is also called something. I am thankful to my surgeon, Dr Afonso Bossuet, and Dr Kedar Padte, in whose hospital the surgery was done in Panaji… and I must tell you I had a lot of family support, it always makes a lot of difference.’ Unfortunately, this is not so with other cancer survivors who suffer enormous guilt, confusion and don’t know how to continue with their stressful life with no help all around.
Then Cynthia Nanoo (nee Rodrigues) from Pune also shared her experience with breast cancer surgery, `I am not afraid of hiding anything! Actually, my in-laws are from Goa, although I have lived last 40 years in Pune…I was diagnosed when I was 54 or 55 years old and I knew about breast cancer from TV shows and so on. I got this pimple, like a bead, in my left breast… but in three weeks it was like a small sweet lime.’ The first two biopsies were negative for cancer, after the third biopsy came positive the lump had to be surgically removed, `No, I didn’t need medicines or radiation but every three months I went back for a check-up for three years, then it was every six months for the next years and finally it’s an annual check-up that is lifelong!’
Cynthia, who runs a children’s crèche in Pune, reaffirms that family support is important because `main problem is family! It takes a little time for family members to understand that you can take it…almost all of us suffer from depression in the beginning, one has to take all this positively and not negatively.
USEFUL WORKSHOPS
SUCH cancer survivors conferences can be extremely educative and useful for those seeking ways to manage their cancer, be it breast cancer (mostly women suffer from breast cancer although men are also known to suffer it). Amongst the workshops one on how to recognize, treat and manage lymphedema conducted by Ashwini was very insightful because post-breast surgery patients tend to neglect their wellbeing. Most are not aware of the vital role played by the human body’s lymphatic system which runs parallel with the circulation system. Lymph nodes are located at strategic places like underarms and groin — if some lymph nodes are affected by breast cancer it affects the smooth operation of the lymphatic system and fluid swelling affect the surgery arm.
Lymphedema occurs in many a breast cancer patient in so much as these swellings of fluid have to be massaged using certain techniques or the use of special bands and bandages (the best made in Germany). The women have to be aware of tingling, numbing, swelling and look for help; plus, there are massage techniques to help move the fluid swellings so that it is absorbed back into body tissues. So that post-surgery impacted lymphatic system is helped to continue functioning normally.
The lymphatic system is the waste removal system of the body which moves efficiently or sluggishly depending on the exercise quota in your life or so to speak! A sluggish or stagnant lymphatic system can contribute to many a recurring problem post-surgery. Women may also have to cope with premature menopausal symptoms which affect their sexual life.
One workshop fielded issues to do with body image, sexuality and intimacy conducted by psychologist Rebecca D’Souza. Sex is a huge issue for many younger breast cancer patients, especially because it is a subject which is rarely discussed. In a poignant moment the women were asked to put up their hand to the question: How often do you have sex? Only three or four hands were raised to acknowledge that when it came to sex it happened perhaps only once a month! It is an issue if their husband refuses or is reluctant to resume sexual relations with them… it is an emotionally complex issue, as complex as cancer itself!
WHY BREAST CANCER?
ASK Dr Mandar Nadkarni, oncologist and surgeon at the Kokila Dhirubhai Ambani Hospital in Mumbai, keynote speaker at the inaugural function, and he sums up: Why cancer? Genes, dietary habits, obesity, lack of exercise, lifestyle stress, deteriorating environment factors…all contribute to cancer. Imbibing liquor and smoking contributes majorly. Goa’s oncologist Dr Shekar Salkar, head of the Gokarna Oncology Association, adds, `Do everything but in moderation!’ Apparently, moderation is something the modern generation finds hard to practice in today’s world.
The generous Devika Bhojwani, a cancer survivor herself and a glamorous one at that, had brought with her a donation of specially designed bras made by Marks & Spencer (UK). These were distributed to some of the women survivors whose entire breast had been excised in surgery and who needed them for better leverage of the vacant space left by surgery. These prosthesis equipped brassieres are very expensive (may be `10,000 each) and most breast cancer survivors cannot afford them.
Nutritionist Sangeeta Jain offered healthy eating guidelines for protecting bone, heart and general health. Dr Prerna Kulkarni and Dr Shona Nag fielded question/answer sessions and clued the women about the nature of breast cancer, how it is possible to take it in their stride and live happily if they take some precautions and practice some rules. The Indian Breast Cancer Survivors Conference rotates annually and hopes to return to Goa after three years.
Excerpted from a patient handout at the breast cancer survivors conference….
Lymphedema Management
Lymphedema is a common outcome of breast cancer or abdominal cancer surgeries and radiation. Removal of
lymph nodes during surgery, hardening and narrowing of tissues after radiation causes this swelling in your arm, breast or leg due to collection of fluid called lymph. It can also happen after head and neck surgeries/radiation involving removal of lymph nodes. Patients who report swelling need long term treatment and management of lymphedema.
Things to remember and follow are:
- It requires a lifetime of management with daily care to prevent swelling and infection.
- Daily care can mean exercises, massage, compression to move the lymph.
- Lymphedema cannot be cured, it it can only be managed.
- Swelling can happen uniformly or otherwise.
- Management requires one month minimum to bring under control to a maintenance level.
- Treatment with meditation may be given to control flare up or infection, when it happens.
- Patient regularity and discipline is necessary.
- Every patient will be taught management according to their individual need.
- Routine monthly follow-up is important.
Procedures for lymphedema include rehab exercises basic and advanced; lymphapress – pneumatic compression with machine; bandaging; massage – decongestion therapy; and compression garments.
The time frame for minimum intervention is two weeks to a month. Alternate days for massage tgherapy/lymphapress/exercises as required; bandaging techniques to be learnt; compression sleeve will only be recommended after the arm/leg reaches a maintenance level; monthly and quarterly follow-up. In case of flare up return for management with antibiotics, anti-inflammatory, any other evaluation.
Lymphedema does not offer us a choice. It is not a 1 time treatment/management. It is important to follow management guidelines for optional results. Every patient will require 30 to 45 minutes or a full hour depending on need. Please schedule and keep your appointments as it involves time.
Some of the Do’s are: Use your arm. Exercise three times day. Use moisturizing lotion for skin care. Wear loose fitting clothes. Do your daily activities. Use mild soaps. Eat and drink healthy. Keep your arms elevated from time to time. Listen to your arm – if it hurts call on your doctor.
Some Don’ts are (on operated side): Avoid lifting more than two kgs. Avoid rings, glass bangles, tight straps, bands and clothes; Avoid injuring he operated arm. Don’t cut fingernails too close to skin; Avoid use of BP cuffs, injections and blood tests. Don’t ignore pain, swelling, burning, itching, heaviness and tingling. Avoid extreme heat and cold water. Avoid home remedies, fomentations and massages on your operated arm without doctor’s advice.
250 cases of breast cancer annually in Goa!
Why is the incidence of breast cancer in Goa on the higher side? If you ask Dr Shekar Salkar, it is because of urban lifestyle, late marriages and having children after the age of 30 years. Of Goa’s six lakh female population around 250 cases of breast cancer are seen annually and about 60% of the women are between the ages of 25 and 40 years. If this is not on the high side, what is? Clearly, the rising number of late marriages and unmarried women is a major cause of concern in Goa.
People think genetics a big role but in fact genetics plays less than 7% in the case of breast cancer. His advice is for women to stop dilly dallying, marry in their 20s and have their first child before they celebrate their 30th birthday. In Goa this is easier said than done but if it happens it can cut the risk of breast cancer. Fifty percent of breast cancer cases are treatable or curable and chemotherapy plays an important role in treatment.
Vis-à-vis breast cancer in India the incidence is highest amongst the Parsi community, followed by Christians (26 per lakh), Hindus (20 per lakh), Muslims (18 per lakh). For a woman to have her first child after the age of 30 years increases the risk of breast cancer by as much as 30%. Dr Salkar urges women to self-exam their breasts regularly for lumps, dimples, inflammation or any change at all which is out of the normal. If you feel anything out of the ordinary or have any apprehensions get an examination done by a healthcare professional.