• Breast cancer

 

I was 31 when I found a lump during a self exam. I had a 9 month old baby girl and a 2 1/2 year old boy. My OB/GYN dismissed my concerns and told me I was "too young" to have breast cancer. I got a mammogram on my own and the radiologist sent me to a surgeon. I felt sick when I heard that it was cancer. My husband was a doctor and was very unsympathetic. He was mostly concerned with how my illness inconvenienced him and his busy career. My parents, sisters, and friends were very supportive. They cared for me and my kids, went to my treatments with me, and kept me laughing and distracted. I had a lumpectomy, radiation and 6 months of chemo. The experience made me stronger and I ended my marriage to a selfish and abusive man. The doctors told me I was 99% "cured", but 3 years later I found a lump in a lymph node under my arm. I cried at the thought of leaving my 2 young children without a mother. It was a miracle that the cancer hadn't spread and I did more surgery and radiation. They gave me injections to put me into menopause, which made it difficult when trying to start over and meet single men. I have since remarried and had 2 more beautiful children (and 2 miscarriages). I have lost several friends from cancer who were also told they were "too young", so I continue to tell our stories.

Jan | 03/08/2007 00:19:00

In November, 2006, I saw a flyer at my medical clinic advertising the Early Detection Wellness Program. The flyer said that if a woman was between the ages of 35-64 and had no health insurance, she would be eligible for a gynological exam. A free mammogram and sonogram were also free if needed. 2003 was the last time I had had a mammogram. I made the appointment for the exam. I had been doing self exams for a long time and had never found anything. There was no family history of breast cancer. My dad had died of lung cancer in 1999. My grandmother had died of colon cancer in 1997. I had had a brush with thyroid cancer in 1979 when I was 22 years old. But it was benign. So I did not anticipate any finding of a lump.

I was sent to have the mammogram and the sonogram. The day after those tests, I received a call from the clinic asking me to come in that day at 2:00 p.m.

At the clinic, the female doctor and nurse said that they had made an appointment for me to see a surgeon. I had breast cancer. It was two weeks before my 55th birthday. I was stunned. Breast cancer? Me? I definitely had not heard right. The doctor had breast cancer and was under treatment. Both the doctor and the nurse were very supportive and spent nearly an hour with me, listening to my questions, offering support. They were awesome!

The surgeon recommended a biopsy. On November 16, 2006, I sat in the surgeon's office as he told me that I definitely have breast cancer in the left breast - invasive ductal carcinoma. This surgeon was young, a resident just completing his surgical residency. His nurse told me that I was the third patient that day that he had to tell that she had breast cancer. It was a tough day for him. He had already discussed my "case" with his supervising doctor. He had much empathy with me and spent a lot of time answering questions, giving me the option of either a lumpectomy or a mastectomy. He also had me make an appointment with an oncologist. Things were just going way, way too fast.

I went to my husband's place of work. I walked in and he knew from my face that the diagnosis had been breast cancer. He hugged me and said we would face this together.

My family and friends were as shocked as I was that breast cancer had intruded into my life. There were many prayers on my behalf and many good wishes.

My mastectomy was on December 11, 2006. The same date as the anniversary of my first date with my husband -14 years before. We normally celebrate but 2006 was different. After the mastectomy I met the oncologist in January, 2007. He was straight-forward and honest. No lymph node involvement, so no chemo and no radiation. Just Arimidex and Clodronate since the tumor was estrogen/progestrone positive.

Within six weeks of starting Arimidex, the hot flashes were minimal but the bone and joint pain in my left knee and my back and hips was unbearable. Felt like someone was taking a hot fire poker and putting it through my knee. My oncologist didn't like my blaming the medication and was insulting during the appointment.

My next appointment with my new oncologist was interesting. He started me on Femara and continued the Clodronate. I have been on Femara for four months until July, 2006. The symptoms and side effects I experienced on Arimidex were not as severe but my quality of life was not good. I no longer could walk my dog a mile a day. I was lucky to walk my dog 100 feet. My thinking was fuzzy and my blood pressure has been up and down. Headaches had increased and were more severe. The oncologist had told me my chance of recurrence without Femara was 78%. Femara only added another 8%. 8% did not translate into quality of life for me. I went off Femara was the month of July, 2007. Symptoms pretty much diminished to almost nothing. Pain level went from 10+ to 3. I am back to walking my dog, slower but steady. Yesterday I made it around the park with several stops but I made it!

Quality of life has been compromised a bunch by breast cancer. I have lymphedema in my left arm and as of today, August 2, I am sporting a new sleeve and glove on my left arm. Beats doing the bandages. I have problems with the pectoral muscle spasming a lot. Life will never be the same again.

In April of this year, I suddenly realized what the diagnosis meant. I have since been working on the grief process. For you see, it was MY breast that was removed. It was MY body that changed not only in appearance but hormonally. It is MY hair that I have lost, not like chemo, but much, much finer and thinner. It is MY body that has changed in appearance. It is MY soul that needs to be healed.

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Meg Karayiannis | 03/08/2007 02:13:00

Thank you for asking for opinions and for doing the story in the first place!

I was 30 when I was first diagnosed in April 1999. I was sitting on the sofa after the kids were asleep watching tv. I remembered that I hadn't done my self-breast exam and proceeded to raise my arm and begin with my left breast. Immediately I felt something and immediately I started crying. I knew right away what it was - no doubts because I knew my body. My husband walked in to the room, saw me crying and insisted that I see my gynocologist the next morning.

I went in and she performed the needle test. There is a hollow needle that is inserted in to the lump area. If air is released it is considered benign. No such luck for me. Even after that test I had to beg my gynocologist for a mammogram. She told me it was nothing and that I was too young to worry about such things as breast cancer. But, if it made me feel better she would schedule the test.

I was further convinced of having cancer based on the look on the mammogram tech's face when she said that she wanted to take a few more pics. She looked like she had just been diagnosed! A few days later I was sitting in the waiting room of an oncologist feeling like I was very out of place. I was definitely the youngest person there.

The oncologist said that the spot looked suspicious and that a biopsy was necessary. Unfortunately, the doc was going on vacation for 2 weeks after that and we thought we would go crazy waiting. The final verification of my self diagnosis was the fact that the doctor came back early from his vacation to give me my diagnosis.

I have since been cured and had 2 reoccurences in my lungs, liver and spine. Without my friends and family this struggle would have been even more horrendous. My husband dealt with it by being my "information" man. He was constantly on the internet and trying to give me encouraging information. My parents and sister helped with our kids and with my after chemo care.

My story is so complex and so bizarre that there is just no real way to put it all in words here. Currently, my treatment is a clinical drug called Perifosine with herceptin every 3 weeks. I just had to have antoher surgery to correct the unsuccessful ovarian removal from 4 years ago. I am outspoken and an advocate for myself! Thank you for listening!

Meg

Alane | 06/08/2007 16:53:00

When I was 30, I had a large painful lump develop in my right breast. I scheduled an appointment with my doctor who was the Chief OB/Gyn. I told her of my lump and she said "You are too young for breast cancer." Upon feeling the area she said "This is not cancer. This is fibrocystic disease." She told me to stop drinking caffeine and to take vitamin E. She spent more time talking to me about the new birthing room they had opened and offered me a tour. She encouraged me to have more kids and sent me away.

Over the following months, I did exactly as she asked. I stopped drinking caffeinated beverages and took vitamin E faithfully. The painful lump remained. I went to the same Doctor for my exam the following year and reported that none of her suggestions had helped. She said that wasn't surprising. She felt my lump again, expressed some sonsternation that she hadn't taken better notes from the previous year, but again told me it was not cancer, adding, "If you feel like you want to have a mammogram sometime later this year you could go ahead and do that, but it's not necessary." She happened to be moving to work at another hospital across the country and was leaving my care in my hands.

One week later while taking a shower I felt a large lump in my right armpit and new immediately that it was a lymph node. I got in to see a Pathologist the next day for a fine needle biopsy. (Not a standard route of treatment but I pulled some strings.) I told her my history and she got visibly angry with my OB. She informed me that fibrocystic breast changes are always bilateral. If you have lumps in one breast, you have lumps in both. As soon as she stuck the needle in the lumps in my breast and under my arm, I saw her go pale but I denied what I was seeing. She went in the next room to look at the cells under the microscope. She came back and told me both lumps were positive for breast cancer. I had no family history of breast cancer. I was 31 years old with a daughter, age 7, a son, age 6, and I had breast cancer...in my lymph nodes. I was sure I was dead.

The next day I saw a surgeon. She sent me to have a mammogram...the test I should have had over a year before. In the waiting room (where my husband was not permitted) I sat with a group of women, healthy women, older women, two of whom were crying because they were so afraid of having a mammogram. It wasn't long before I started crying out loud. I had to go into the coat closet sized changing room where I cried unconsolably. After a short while a knock came on the door. It was the surgeon. She stepped into the cramped room and held me while I sobbed and quivered with fear about what would happen to my kids. After the mammogram, I met with a radiation oncologist and oncologist. I had to retell the story of why so much time had passed with this thing growing inside of me. I was told (and I agreed) I would have a mastectomy ASAP. The Oncologist talked to me about low survival rates. It was very dark and harrowing. They weren't giving me much hope.

My family, which is very disfunctional, showed up in the waiting room prior to the surgery. My mother and sister had driven from out of state, and my father whom I had not seen in 15 years, who had never seen my husband or my children brought his blind wife who I've never met to see me into surgery. Tense doesn't even describe the situation. I went into surgery crying, and I woke up from surgery crying uncontrollably.

Afterwards, I was so thrilled to have the cancer cut out of me that the nurses asked if "since I was doing so well would I talk to this other young woman who wasn't doing nearly as well?" That is when I met the only other young woman I knew who had breast cancer (until years later).

I had to undergo eight weeks of Chemotherapy. I wanted every kind of kick ass toxic treatment available. When they pumped me full of junk I said "Thank you, can I have another?" My husband was incredibly supportive. He had to give me a shot every morning to keep my white blood cell count high enough to get my chemo. We were always very close and very much in love. It was hard to see how upset and responsible he felt. He wanted to make me better but that was impossible. People used to tell me that they weren't worried about me, but they were worried about him. His spirit was crushed and it was hard for me to confide my fear to him since I knew how much he needed to see me be strong. I didn't have a lot of friends. One family helped us through. They were amazing. The wife was my best friend and she would let me come over and cry without needing to talk. They were the only people that treated us like normal. Even my family was weird. One of my sister hardly ever talks to me anymore. I think she is too afraid of me dying. She made a speech at Thanksgiving that year, about how much we needed to appreciate each other because "some" of us might not always be there. Ouch.

 

Three years went by and I was feeling good. I had found a hard lump in my armpit, smaller than a pea that felt like scar tissue. You could feel the surgical staple they had left there, marking where the radiation needed to go. All of my doctors felt it and said the same thing. It was just scar tissue. We moved to a new state, a new job for my husband, a new school for my kids, leaving some of my cancer life behind. Shortly after moving I had a TRAM flap reconstruction. I kept feeling my scar tissue lump and worrying. My new doctor felt it and wasn't concerned. But still, my fear lingered. Finally, 3 1/2 years after my original diagnosis, I had it removed. Bingo. Cancer. They call it a local/regional recurrence. I went to the Mayo clinic to have the area excised to be sure no cancer remained. I was relieved to meet the surgeon and see that he had large capable hands. I told him to cut off my arm if he had to. He looked me square in the eye and said he understood. I woke up in my room where my husband had blon up rubber gloves and hung them around the room like balloons. There was no remianing cancer cells. I then went through a round of tests: PET Scan, Bone scan, Cat scan, you name it. The cancer had not spread. The family that had been so supportive of us, quit being there for us after my recurrence. That was as hard as the cancer returning.

It has been four and a half years since my recurrence. I still see my doctor every six months. I have had a hysterectomy and my ovaries removed to get rid of all estrogen in my body. It was hard to give up my ovaries. I felt like it was the last shred of my youth that had been taken away. I lost my choice to have more children. That decision had been effectively made by my cancer, but now it was truly final. My husband also informed me that I couldn't adopt any kids with my medical history. It is hard to believe that institutionally anyway, you have little hope for survival. I am, in short, a risk not worth taking.

Most of the time I am very hopeful. I believe in myself. I know I am strong. I wouldn't want to be the same person I was before I had cancer. I am a better person because of the experience. But I mourn the loss of innocence and the carefree attitude I once enjoyed. I am 39 years old. Both of my kids will be in High School this year. I have a lot to be thankful for. But I mourn the loss of my dreams. And I work hard everyday to make sure that my experience doesn't happen to anyone else. Especially not my daughter.

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Ruth | 07/08/2007 16:33:00

I was taking part in a screening trial of women from 40 to 50, in the UK you get regular mammograms from 50 onwards. I was 46 when the mammogram proved positive, I had a biopsy followed by a lumpectomy and 6 weeks of radiotherapy and was told to go home and forget about it, the tumour, although aggressive, had not spread to my lymph glands and was very small, about the size of a grain of rice, so I shouldn't have any more trouble.

11 months later I was having excrutiating back pain and mentioned it to my oncologist during routine appointment, after x-rays, MRI and bone scan I was diagnosed with secondary breast cancer in my spine and ribs. I then had another 2 weeks radiotherapy and started monthly infusions of Zometa. It was explained to me that I was now considered incurable and the medication could only try to slow down the progression of the disease, a lot to take in at 47, my oncologist informed my GP that my prognosis was about 2 years.

4 years later I am still here, I have had some slow progression to my bones and now have a tumour in my sternum too. 18 months ago I had another mammogram which showed another tumour in exactly the same place which proved to be a grade 3 triple negative, identical to the original tumour. 2 weeks later I found a lump in my armpit so had a second lumpectomy and axillary clearance, once again lymph nodes proved to be clear.

Last month I had a follow up mammogram and yet again another tumour was found so I am currently awaiting an appointment for my third lumpectomy.

On a positive note I am beating the statistics and although I have some mobility problems and have to take morphine for pain I think my quality of life is quite high, I am certainly trying to make the most of every day. I have also got in contact with many amazing women fighting the same battle as me on the internet and have been privileleged to meet many of these women in person, sadly too I have lost many friends to this cruel disease.

There are new treatments being developed all the time, and although so far none of them have been right for me, I live in hope that I can hang on long enough for something, if not I hope that there will be more medicines available for others in the future

Ruth

Megj | 08/08/2007 11:01:00

I think its great that you are making a film I was diagnosed ten yrs ago I found a lump in the december My doctor said it was a milk gland as it started getting bigger I went back in the march and My doctor sent Me straight too the hospital I remember that day well I was alone and the mcmillan nurse was good when I was given My results a week later i was devastated but vowed I would not give up I was in within the fortnight all done then started My radiotherapy and havent looked back I am so glad I was made aware of the need too check yourself and now I wish you luck with the film

best wishes meg and good luck too all out there who are fighting it at this moment in time

Lorna | 12/08/2007 09:47:00

This film sounds like something I would like to see having history of breast CA myself and now 6 years free can only hope for the same for everyone diagnosed

Val | 12/08/2007 23:39:00

Aged 37 in April 1996, I found a lump in my right breast. My son was 10 months old & I was still breastfeeding. I thought it might be mastitis, or just my imagination, but it didn’t go away. I saw my GP & was referred to a breast surgeon immediately. He arranged for all the usual diagnostic tests, but was fairly confident that it would not be anything to worry about. When the tests were inconclusive, he arranged for a lumpectomy in day surgery. At this stage I was still quite calm, but I did say to the surgeon that should he find anything untoward, he had to cut everything off. He looked at me rather sternly, and said, “There won’t be any need for that”. 10 days after the surgery on my way to get the results, I knew that I would get a diagnosis of cancer. My sister had had breast cancer 10 years before that & she is 10 years older than me. Our father had died of cancer too, aged only 55. It seemed inevitable that it was my turn next. As I feared, the result was a malignant tumour. Even though I expected it, it still came as a shock - my mind went blank and I heard nothing the surgeon said. My friends were shocked and upset too -they said I was "too young" to have cancer.I had more surgery to investigate the lymph nodes & get clearer margins around the excised area. This was good news - no lymph nodes (out of 14 removed) were affected, and the tumour was only 16mm, but it was grade III & I was advised to have chemotherapy & radiotherapy as the standard treatment. It was oestrogen receptor negative, so I was not offered Tamoxifen. The treatment started in August ‘96 and finished in January ’97. I was lucky not to lose my hair, but each month the accumulative effect of the combined chemo & radio therapy left me more & more exhausted. Some days I could barely get up the stairs my body felt so heavy and it was difficult entertaining an 18month old. I finally went back to work in April 1997 - a year after finding the lump.My son was now nearly 2, & my husband, altho’ very supportive, had found my treatment very stressful. Now I wanted to put everything behind me. Little did I know, it had only just begun…. In Jan ’98, at a family party, I was just saying goodbye to my cousin who had also had breast cancer, when she added, almost as an afterthought, that she had been to the genetic clinic at the Royal Marsden. She said I might like to go too, as she had tested positive for one of the breast cancer genes - BRCA1. This was a complete bombshell - I’d just reached the stage in my recovery where I didn’t think about dying on a daily basis, & finally, a year after the chemotherapy had finished I was beginning to feel well again.

I often wonder what would have happened if she’d forgotten to tell me.

My GP referred me to the genetic team at the Marsden and I was seen in June ’98. I knew, even before I was tested, that if my result were positive I would have prophylactic surgery.I was given information & counselling about the implications of knowing my BRCA1 status, and the result, which I got 3 months later, was unsurprisingly, positive. It felt like every cell in my body was a time bomb. My chance of getting a new breast cancer in my lifetime was now 30-40%

The risk of me getting ovarian cancer between the ages of 40-80 was a staggering 60% (The rest of the population risk is only about 1-2%)

My son was only 3. I needed to do everything possible to reduce my chances of getting cancer again. The thought of him not knowing me as he grew up was unbearable. I had already asked the breast surgeon about annual mammograms, and even prophylactic surgery, but he did not take me seriously until I went back & waved the BRCA1 result at him. With that, he got his diary out straight away & asked when I wanted it done. A routine mammogram in Oct ’98, showed an “area of density” that required further investigation. The anxiety I went through over that, confirmed that I was doing the right thing. I couldn’t wait to get them off! My husband knew how I felt & was in complete agreement about the surgery.In Dec ’98 I had a bilateral mastectomy & reconstruction. It was very painful, but I had no regrets; not even when my results showed that all the breast tissue removed had been clear.In 2001, I had the recommended screening for ovarian cancer. This involved a very inconclusive trans-vaginal ultrasound (as they couldn’t find my ovaries) & the CA125 blood test, which was within normal levels.

 

By 2002 I was getting nervous about still having my ovaries at the age of 43.It was a while since I’d been in hospital so I felt I could face the next step.The gynae surgeon was more than happy to take out whatever I wanted,so I opted for a total hysterectomy & oophorectomy which was done in July ’02.

 

I am now followed up annually by the carrier clinic at the Marsden, and have an annual CA125 test. This is because the BRCA1 gene can cause alterations in the peritoneum and this can’t be totally removed. (If it was possible I would have had that out too!) I now have a 1-2% chance of BRCA1 causing peritoneal cancer, and there is a slight chance that I could get a tumour from any remaining breast cells. My sister also BRCA1, did not have breast surgery for 16 years after her 1^st diagnosis. She had always thought it was something she could never go through with. She gradually changed her mind & her results following surgery in 2002, showed that she did in fact have another tumour growing.

When my eldest sister tested negative, we all breathed a sigh of relief. She has 2 daughters, so it is good news for them.

My experience with breast cancer has certainly changed my life - the stress of it contributed to depression for both me & my husband, which in turn contributed to our separation & divorce. Every day is precious - and the most precious moments of all are those spent with my son. Val

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Jamie in California | 31/08/2007 05:23:00

In December, 2005, Ductal Carcinoma In Situ was found in my left breast. Although surprised because 13 years had elapsed since my first cancer (well beyond “cured”), my strongest emotion was annoyance. The previous 18 months had been devoted to caring for my dying father, then my widowed mother; by comparison the cancer was just a royal pain.

For the first go-round with cancer I had taken the conservative path of lumpectomy with radiation, which ultimately failed me, so this time I was aggressive. I knew I would have a bilateral mastectomy with reconstruction; I just needed to learn how it could be done, and by whom. Research led me to Dr. Gabriel M. Kind in San Francisco, who has performed the DIEP surgery since 1998. He explained the various options, but I easily chose the DIEP procedure and scheduled it for February 6. By the way, state law now requires insurance to pay for all reconstruction.

Surgery went without a hitch and finished in about 10 hours, however soon afterward the left breast looked bad, so they returned me to surgery and discovered that a vein had closed (probably weakened by the previous radiation) and caused a thrombosis. Dr. Kind took a vein from my ankle and reconnected the blood supply between the mammary vessel and the flap. He saved the flap, but the breast had nearly doubled in size with clogged blood, so he had to leave the wound open to heal. It looked nasty, but didn’t hurt more than the right breast, and eventually healed. It did require an extra revision surgery to reduce the size for symmetry, after which I had two lovely C cups, with nipples and areola to follow.

I can happily report that advancements in pain management made it so that I did not feel the 180 degree abdominal incision for five days—they achieved this by inserting catheters filled with topical painkillers directly into the incision. By the time the catheters were empty I could easily avoid pain by moving cautiously. The other pleasant surprise was the absence of pain when they removed drainage tubes (past experience had me dreading this). A new material for the tubing does not adhere to internal tissue, so it doesn’t feel like your insides are ripping out when the tubes are removed. What an improvement!

Except for the extreme nausea in the hospital, the physical suffering was surprisingly easy. I did have a hard time with swelling—not the lymphedema that makes the arms blow up to twice their size, but all through my ribcage and around all of the scars. Dr. Kind referred me to a physical therapist in San Francisco who specializes in post-mastectomy lymph drainage. Her name is Julie Wong, and she is a breast cancer survivor also. Although she did not require a mastectomy, she did experience stubborn swelling and could find no help until she located a specialist in Washington who gave her relief. Julie took his training and now passes the gift on to the rest of us. She calls me her poster child because my case was so difficult and the results were so good. My story is soon to be on her website, which is www.proactivetherapy.com.

On the other hand the emotional aftermath was almost unbearable. I am not a stranger to depression and anxiety—I have experienced both, plus I am a psychotherapist and work with sufferers every day. Were this not true I would have thought I was going insane when flashbacks to childhood abuse suddenly erupted weeks after the surgery. While I could not prevent or stop it, at least I understood what was happening to me, and had resources for coping with it. I became miserably dependent on my doctor (he has the patience of Job and very good boundaries). I also had the good sense to call my own therapist to begin the hard work of healing wounds I did not know were there.

What an ordeal. I was so overwhelmed for a time that I missed work for two months beyond the post surgery period. Once I stabilized and returned to work, dealing with the PTSD (Post Traumatic Stress Disorder) still required intensive therapy, sweat and tears (no more blood!), but did not sideline me completely again.

Twelve months and a thousand deaths later I have emerged from the “valley of the shadow of death” stronger and healthier than before, both physically and mentally. Neither recovery is automatic; both require patience and effort, but the fruit of the labor is beyond measure. There are losses with the gains. I love my flat tummy and perky breasts. And my bikinis! But I miss the sensitivity of my nipples, a very important erogenous zone. My husband and I are exploring other “zones” for intimacy. It’s not a tragedy, but it is a loss.

But even more I love the emotional freedom gained through this “severe mercy.” It has been a journey I would never have signed up for, but I would not trade for anything. My experience is probably not typical, but my prayer is that another DIEP sister will find something in my story that helps her make sense of her own.

I sign off with my DIEPsister motto: “I am alive, and I have cleavage.”

Jamie

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