Waiting for a cure

This year for October, I was planning to write a well researched thought over article about Breast Cancer. I was aiming to get the statistics and figures, do some fact checking and present varied point of views regarding money spent researching cure for Breast Cancer. Cure is what all survivors want. We are desperate for someone to tell us that its actually all over for us.We never get to hear that. We don’t get a conclusion to our misery unless death bails us out from this chronic uncertainty.

So we party at the end of chemotherapy or the end of radiation or just because our life was spared, we celebrate “remission” or “NED” ( no evidence of disease status). We grieve the loss of our health, we endure the “collateral damage” and we keep moving while science slowly inches to this hope we have called “cure”. We are willing to walk , run , race and gallop to it. The society getting drowned in pink in October is being told that a cure is coming. But is it near?

We ,survivors , want to hear, “Go live your life, you are cured!”. But cure remains elusive. We have the monster of Breast Cancer but no hero to slain it and show us the head severed  from its body or strangulated by the very same pink ribbon that is all around.

We want the pink ribbon to be the noose around the neck of Breast Cancer and leave it gasping  for air just like every woman who hears for the first time” You have cancer” . We wish for the eradication of the disease that takes mothers, sisters and daughters away. We want to life without fear and apprehension and insurmountable stress.

All the pink walks combined have not paved the pathway to cure. It still remains a dream, the fantasy of every  breast cancer patient.

I was planning to write about all of it. The funding, the controversies, the pink washing and the sisterhood.

I wanted to get my thoughts together so I can write a refined and polished piece. And then I got a migraine headache. A headache that lasted 5 days which didn’t respond well to the migraine medication I usually take. This lead to a neurologist visit which lead to a Brain MRI which lead to finding of a spot on the brain that no one knows what it is. Alarming as the finding is, it is just another day in my life . So I get recommended  ‘the wait and watch ‘ approach. Wait to see if it grows, wait to see if its cancer.

This is what living with cancer is , Wait and Watch. Do all treatments recommended and hope for the best while doctors watch over you and you wait anxiously to get through the first five years. Some get through, some don’t. No one knows, which group you fall into. Unknown and unpredictable, that’s  the gestalt of life with cancer.

Every symptom occurs after cancer needs to be assessed for the possibility of it being a cancerous lesion. And it will remain so until we have a cure.

And a common side effect of having had cancer is losing time. Weeks to increased surveillance after having a new  symptom, waiting in doctors offices, anxiety , fear, frustration and sadness , therefore that spot on the MRI  took away from me the time I had set aside for my article.

The loss of time and money remains enormous in the life of a survivor.I can only imagine the actual cost of these life time of investigations and scans done on every single breast cancer patient. The PETS, the MRIs and the CTs. My insurance told me that the MRI of my brain was 2,500 dollars. I will need a repeat in 6-8 weeks. So far in the last 2 years, I have had one PET and probably a dozen MRI’s and CT scans combined. And this will continue for the rest of my life.

Because we have no cure, we wait and we watch. We watch 40, 0000 women die every year from Breast Cancer and we wait. We wait and we watch, we watch and we wait.

We are all aware, I am not sure there is anyone who doesn’t know what the pink ribbon stands for. Come October every thing from soup cans to cement mixers, turns pink like it was submerged in a giant vat of peptobismol.

Breast Cancer Awareness. Everyone is attune to the presence of this deadly cancer amongst us. But this awareness leads to at the most, early detection.

We are not preventing cancer by spreading awareness. Get your mammograms isn’t the answer. The mammogram awareness can lead to early detection, it doesn’t not stop a cancer from growing. We are to a point where we can diagnose breast cancer very early with mammograms.However, we also know now that we are over diagnosing and aggressively treating DCIS( Ductal Carcinoma in Situ), more than it needs to be.Thought processes about management of Ductal Carcinoma in Situ are changing.

Mammography has significant limitations most notable being increased breast density. Women with dense breast are repeatedly failed by mammograms and their cancers can go undetected for a long time unless an Ultrasound is done in conjunction with a mammogram to achieve better imaging. Sometimes both can miss the cancer, which in my case was about 7 cm when first detected on an MRI.

Young women tend to have more aggressive cancers, young women tend to have dense breasts. Therefore, we are not gaining much edge here with mammogram screening. The 3D mammograms seem to offer better resolution but currently aren’t being used extensively.

MRIs that offer very high resolution remain reserved for those that are high risk and insurances fight tooth and nail in approving those even for high risk patient.  They ,of course , carry risk of false positives and over investigation and therefore are not considered good screening tests. Having had breast cancer, I do  get a breast MRI every year.

In the U.S., breast cancer is the second most common cancer in women after skin cancer. It can occur in both men and women, but it is very rare in men. Each year there are about 2,300 new cases of breast cancer in men and about 230,000 new cases in women.

We don’t know what causes breast cancer. Certain risk factors are known.

National Cancer Institute’s web side states the following

“Studies have identified numerous risk factors for breast cancer in women, including increasing age, personal history of certain benign breast diseases or breast cancer, early menstruation, late menopause, never having been pregnant or having a first pregnancy after age 30, use of oral contraceptives, family history of breast cancer, presence of certain inherited genetic changes, history of radiation therapy to the chest, long-term use of combined hormone therapy, use of diethylstilbestrol (DES), increased breast density, alcohol use, and obesity after menopause.”But they are risk factors not direct causes. Breast Cancer is likely multi factorial in causation.

We do realize that there has been significant advancements in treatments and management of Breast Cancer in the last 100 years. Women are no longer subjected to elaborate surgical procedures  that donot help increase the survival rate. Gone are the days of Radical Mastectomies and the accompanying  disfiguiring complications.. We now have data that lumpectomy can improve survival similar to  a mastectomy in cases of early disease. There are more choices available to a woman today surgically than before.

But we have also seen a rise in fear of the illness. More women now opt for bilateral mastectomies than in the past out of fear not necessarily on the basis of risk. Its only the proven genetic mutations like BRCA 1 and 2 that cause significant likelihood of developing breast cancer , need to be addressed with bilateral mastectomies.

We have seen new drugs and treatments too. Herceptin being the most notable to treat those women who have breast cancer with a certain receptor called HER 2. Tamoxifen remains the most extensively used hormonal treatment in Breast Cancer treatment. We have seen a new class of drugs called the Aromatase Inibitors and clinical trials supporting their use and survival advantage in post menopausal women.

A lot has happened in the sorting, sifting and treating of breast cancer but none of it is even close to what is defined as a “cure”.

Recently a very rare gene identified in women of Polish and Canadian French descent that increases Breast Cancer risk. A few other mutations are now known to increase the risk but their clinical application remains limited.

We also understand that all breast cancers are different from each other based on their cell type and receptor status. There is significant variations among breast cancers. We are just entering the world of genomics in medicine and are at the brink of utilizing how to target cancers with more precise treatments and immunotherapies.

We maintain the insight  that cancer is a hard disease to beat since it has high ability to change and mutate. Mutation is  the biggest challenge in treating any kind of cancer. Breast cancer thus is no exception. It changes , it morphs , it hides. It can recur and metastasize to other organs. Metastatic Cancer is the kind that kills by spreading into the other organs out side of the body. Women who die of breast cancer die of Metastatic disease in their other organs.

Not having a cure means 1 in 8 families will suffer at the hands of this disease for the rest of their lives. Some will go bankrupt because of medical bills. Some will have the children suffer and live without a mom. Some will leave grieving families with elderly parents. Not having a cure means, all survivors live in the fear and anxiety of having no cure. Once diagnosed with cancer, the uncertainty is ever present.

Not having a cure means, going through scans and tests for the rest of your life. Not having a cure means living in the shadow of mortality.

Cure, a hard reach. Cure our utmost desire. Cure

But I also grasp as a physician that finding cure is a high aim. In medicine,  we don’t have cures for many chronic illnesses. Cancer is a chronic illness. It can be managed and treated like Diabetes and HTN.

Medicine is most effective in curing infections. We do not have cure for Diabetes or High blood pressure , we have ways to manage them and we can attempt to prevent them. We have lots of research available to link the high risk factors leading to these particular diseases and devise a plan of action.

To cure , we need more understanding of the risk factors, the process of the cancer proliferation and spread and ways to stop the cells from becoming cancerous and eventually  effective treatments to eradicate all cancer cells from the body, active and dormant. We are getting better at all of it  but at a pace that is disproportionately slower than the fatal wrath of this illness.

So here we are in October , the breast cancer awareness month. Aware that one in eight women will be diagnosed with breast cancer in their life time. Aware that once cancer is diagnosed, there are very harsh treatments for it. Aware that there is an alternate life path after cancer peppered with  fear and residual damage, should we be luck enough to survive. Aware that a significant number of women will die of  breast cancer despite early detection and treatment.

I am aware that two years ago, I was diagnosed with a potentially fatal illness that has no cure. There are millions like me. We will live our lives worrying about new symptoms, recurrences, getting scans and seeing oncologists. If our aim was to eradicate breast cancer, we continue to fail miserably. The gap between awareness and cure remains wide.

Despite extra ordinary advancement in the field of cancer and having even the first anti cancer vaccine, we are away from the cure of breast cancer. We all have pink t shirts and pens and bracelets and egg cartons with pink ribbons on them, we need a cure. Until then, we wait and we watch.

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5 thoughts on “Waiting for a cure

  1. Uzma, despite your lack of availability the last few weeks to concentrate on a article regarding Pinktober, you still covered a lot of angles with this post. You described our lives as patients so well. You are right. All we do is “wait and watch.” All of us, even those diagnosed with early stage. We’re never done with cancer. There’s no cure. Too many distractions and not enough awareness on the facts. I can’t wait for a shift in direction, otherwise, we’ll continue to wait and watch.

    Thank you for sharing your thoughts so eloquently.

  2. YES! Exactly. this month marks 8 years of dealing with this beast, five years of treatment, scan, repeat. 18 months of Bone scans every 9 weeks where I can set off a geiger counter. I gave up counting CT scans and I’ve had over 50 rounds of varying chemo treatments. Two porta-caths. And yet, over 40,000 men and women will die in 2015. This is a health crisis, but the marketers have turned it into a pink flood. I don’t want to “wait and watch” anymore! I want to SCREAM until my throat bleeds. Maybe then, we will as a world recognize this disease for what it is – a KILLER!

  3. I loved reading your post and look forward to reading more. Thank you for taking the time to write about important issues to breast cancer survivors.

    There is one point in your article that I would encourage you to think about a bit more closely. Cancer can be a chronic illness for those with stage 0 – stage III diagnosis. However, for those of us that are metastatic, we do not feel like cancer is a chronic illness. Chronic implies something that we will live with for a long time; something like diabetes where we can take a drug that will manage our condition. Instead, we are facing a terminal diagnosis, with a median survival of about three years. Only 20% will make it to five years. That doesn’t sound chronic to us.

    We need a cure. And we need more money invested into research.

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