Barbara: Breast And Ovarian Cancer Survivor

I always knew that someday I would hear the words "you have cancer." My mother was diagnosed with breast cancer at age 44 in 1973, and was treated by having a radical mastectomy. She looked like the famous NY Times magazine cover. The following year she had a reoccurrence in the remaining breast tissue and at that time went through radiation. She remained free of cancer for the next 5 years, but started having reoccurrences and died in 1986. Other than my mother, there was no one on my maternal side of the family with a history of breast cancer or any other type of cancer. But she had been born in Germany and many of her family were killed in concentration camps.

On my fathers' side, I grew up knowing my grandparents were 1st cousins. And of their combined 14 siblings, all but 3 died from cancer. Some of breast, some of "stomach" cancers, and others of undisclosed cancers. In those days you just said it was the big "C." One of my grandfather's sisters had a prophylactic double mastectomy in the 1950's. So you know something was happening in that side of the family, to convince a doctor back then to do so radical a procedure.

My dad's sister was diagnosed with breast cancer at age 36, had a mastectomy and is celebrating her 50th year anniversary being free and clear of cancer. Her daughter, my 1st cousin, was not so lucky and was diagnosed with ovarian cancer at age 42 and died 7 years later. But every time you filled out the forms in the doctor's office, no one was interested in the paternal side of the family, only the mother's side.

I didn't consider doing genetic testing, although it was offered to me. I wasn't prepared to do any prophalytic procedures and I was mis-informed about the consequences of having such a test done. Would there be discrimination by my health insurance company, would I be able to get life insurance, and would anyone employ me? Now I know many of these fears were unwarranted. In fact, I just recently obtained a long-term care policy.

I was, however, vigilant in seeing my physicians regularly, having annual mammograms and pap smears. In May of 2002, my mammogram had suspicious calcifications and needed to be biopsied. The results came back…malignant. At that time I made an appointment with a genetic counselor.

I opted not to wait for the results of the genetic test to schedule a lumpectomy and radiation treatments when I was diagnosed with having DCIS (Ductal Carcinoma In Situ). My doctor recommended the lumpectomy and radiation as he said it was just as effective as a mastectomy for treatment of DCIS. My mother had had a mastectomy as treatment for her breast cancer and she was dead, so I was very happy taking another route. Also because her reoccurrence happened in the remaining breast tissue -- and having a mastectomy does not remove all the breast tissue -- for me removing my breasts would not have given me peace of mind. However, when the results of the genetic test came back positive for BRCA2, I decided to consult a doctor about having my ovaries removed.

Radiation was supposed to start the beginning of August, but my health insurance plan dropped the facility I was supposed to be treated at. The doctors conferred and decided I would be able to start radiation in September but no later. I needed to pick up new insurance. In August, I started having break-out bleeding and very irregular periods. But since I had always had extremely painful and heavy periods, I didn't really think twice about it. My gynecologist suggested having a transvaginal ultrasound. The sonogram revealed 2 fibroids or cysts. I was to repeat the test in November along with a CA125. At that time the test showed one fibroid/cyst had disappeared but another had appeared. The other fibroid/cyst had remained the same. MY CA125 was 12. The normal is anything under 35, so this was certainly not alarming.

In August, I also had a bout of indigestion. I remember it because I had never had indigestion before. It lasted about a month and then disappeared. The doctors dismissed it as stress-related.

On January 15, 2003, I had my prophylactic oophorectomy and hysterectomy. Everything looked normal. My gynecologist had told me he didn't think he could remove the ovary and the cyst laparoscopically, so I consulted a gynecologist/oncologist. He was able to do a laparoscopic procedure assisted by my gynecologist. It was the gyn/onc who suggested I also remove the uterus, as I was taking Tamoxifen at the time and Tamoxifen increases the risk of getting uterine cancer. No one thought anything was amiss until the biopsy report showed cancer. The cyst was outside the ovary and touching the fallopian tube, so I was classified as having a stage 2B cancer.

Having just gone through treatment for DCIS and overdosing on information from friends, family and neighbors and the internet, I decided not to interview an oncologist but to use my gyn/onc to administer chemo for ovarian cancer. What I found interesting about having ovarian cancer was no one knew of anyone who had had it, or who was alive. So where I had been inundated with stories about breast cancer, I knew almost nothing about ovarian. I needed to start chemo immediately. I knew my gyn/onc was a top doctor as my best friend was a senior VP with a major health insurance company and had done a lot of research regarding his abilities. So I put myself in his hands. Plus I had formed relationships with doctors through my breast cancer experience who also recommended him.

My gyn/onc suggested 6 cycles of Taxol/Carboplatin. He also suggested I have treatments every week instead of every 3 weeks, the usual treatment. He suggested the treatment would be less toxic and better tolerated. During my first injection of Taxol, I had an allergic reaction, which I had been warned about but had been told was extremely rare and was something my nurse with 10 years' experience had never witnessed. But I did have a reaction; I stopped breathing. Since then I have heard of many women who have had the same reaction. So I'm not sure how rare this is. They upped the benedryl and dripped the Taxol at a much slower rate, and I was able to tolerate it.

So for 6 weeks, every Friday I was administered chemo, on Sundays I would be sick, feeling flu-like, on Tuesdays I would have my blood drawn, on Thursdays I would see the doctor, and on Fridays I was back getting chemo. After the 6th week, I asked my doc if I could go on a 3-week cycle so I could have a life. Since I had developed neuropathy and lost my hair from the chemo, I didn't see the advantage of the weekly regime. I needed to see friends, or go to a movie -- anything to feel like a human being instead of being immersed with this illness.

After the 3rd cycle, I needed more surgery as I had never been staged. So I went back to the hospital and was reopened. They removed my lymph nodes and peritoneum and did a stomach wash. Everything was clean and 2 weeks later I was back for the final 3 cycles of chemo.

My doctor did not recommend a port. But by the 4th cycle, my veins were a mess. The nurse had to stick me 7 times to find a vein. I wish I had known more about ports. I cried every time I had to go for a treatment. To this day I need to take valium before getting intravenous treatments.

I didn't mind losing my hair. I never wore the $900 wig I bought. What bothered me was the loss of eyelashes and eyebrows. That made me look sick, I thought. But hair grows back. I was thankful that my cancer was found so early and I was going to be ok.

For the next 5 years, I needed CAT scans done every three to four months. The CAT scans expanded to include pictures of my lungs, as it was discovered that I have nodules which they were watching. I have recently graduated to having the scans every 6 months, but the nodules have remained constant. I am off all medications.

But to date, I have never had a reoccurrence!

Since my diagnosis of ovarian cancer, I have been volunteering for several organizations to raise awareness about ovarian cancer and to support people dealing with the disease. I feel ovarian cancer gets the short end of the stick where women's cancers are concerned. I want to give women hope and give them someplace to turn when they have questions about ovarian cancer.

For the Ovarian Cancer National Alliance (OCNA), I am a speaker in the Survivors Teaching Students program, addressing medical, nursing and physician assistant students about symptoms and genetic risk for breast and ovarian cancer. I volunteer for Cancer Hope, making phone calls to women or family members who may have specific questions about treatment or the disease. I also volunteer for SHARE as a member of the Ovarian Cancer Helpline. It's my way of giving back, and maybe by talking to me, patients and survivors can get the hope they need.

Author

Barbara


  • Barbara

    Thank you for that information Ilene. Sharsheret is also a great organization and a useful tool for young Jewish Women.

  • Anonymous

    Thank G-d i just celebrated my first anniversary from my last round of chemo for ovarian cancer. My CA125 is good, and i just returned to the gym and am pround that can spend at least 1.5 hours and feel good.
    However, my sister's friend, who is a young widow is going through this battle and unfortunately needs alot of support. She already had 2 surgeries and gets slow chemo as she is very sensitive. My question is if there is someone out there whose battle to recovery was not easy and is surviving and would be willing to speak to this person. Currently she is having difficulty holding food down and her CA125 doubled in a short time. CT showed enlarged lymph nodes in chest area which the doctor still has to read.

  • Beth Kling, Communications Director

    Dear Anonymous,

    I'm so glad you're doing better but am sorry to hear about your sister's friend. Please let her know she can get telephone support from SHARE's Ovarian Cancer Helpline. She can speak with an ovarian cancer survivor, and could even be paired with a peer who has had a similar experience. Here is the number:

    866-537-4273

    If she would prefer not to make the call, we could call her. You or she can visit this page on our web site and request a call:

    http://www.sharecancersupport.org/services/hotlines/#request

    Please let us know how we can help.

  • April

    Thanks for sharing, Barbara. Just reading it makes me not feel so alone. I really don't know what my story will be just yet. A month ago, I was found to have multiple fibroids in the uterus and a 2.5 cm cyst on my right ovary. I just got the hysterectomy scheduled for Nov. 1st and removal of the right ovary. Now my mammogram came back with micro calcifications. I had a re-check and now I'm having a breast biopsy on Wednesday. Don't really know where I stand right now. Don't know if I'll be having a hysterectomy, a mastectomy, or both before the end of the year… I'm a Hodgkin's survivor and had radiation to my chest back in '94 so I've almost expected breast cancer would come at some point. So glad you are well!! I'm 47, by the way with (all on my dad's side) 2 cousins that had breast cancer (I died at 31) and a cousin that died of cervical cancer at 42. My mom, grandmas and great-grandmas never spent a day in a hospital. go figure…

  • Ilene Winkler

    Barbara, thanks for sharing your story. Let's hope all the speaking you do gets doctors to pay more attention to our fathers' family history of cancer, not just mothers–and to ovarian cancer. For Jewish families from Europe, as you said about your mother's family, this history is especially painful and difficult. I was interested to see that Sharsheret, a breast cancer support organization for young Jewish women, is having a teleconference and webinar on this subject on Wednesday July 14th. It's called "The Impact of the Holocaust on Breast Cancer in Jewish Families Today." For more information people can check their website at http://www.sharesheret.org or call 866-474-2774.

  • Susan in Florida

    Some of you have been supporting me through calls. I so appreciate this. For some reason, I never seem to be able to get these calls. I am so needing to talk with someone again. One person who has been calling is Sabina but I haven't managed to receive her calls due to work or just plain too much going on here. She asked me to leave a message at a number what the best time to reach me is. My number is 904-716-6221 or my home at 904-714-6446. I am so sorry. I have been teaching classes at a local community college. But tomorrow I will have my phone on loud so, if Sabina or the other very helpful lady who called me the day after I logged on here last week would be able to call me before 11:30 am when I get my CA125 done it would be a big help. I am very scared. I have two cysts one in each ovary about 2 cm for each one. They appear to be fuctional cysts (OK), but with a history of Br Ca at age 42 , 5yrs ago, and my mother having had br can for 19 years, I am scared . Please pray, and if anyone wants to call me or email me at [email protected]. My purse just got stolen on Friday in a dr office or "lost" rather, so it has been crazy lately. I think I am so anxious that I am not thinking as clearly as normally. Does anyone know if the ca25 count is absolute if it is high or can it be off. Just scared. Susan in Florida

  • Susan Ravn

    I had breast cancer in 2005 at the age of 42. It was stage 1. I had lumpectomy, chemo, and radiation, and have been on estrogen blockers since finishing chemo. Anyway, my period didn't come back after the chemo, but I recently went to have a vaginal ultrasound to check my ovaries as my mom had breast cancer also and was diagnosed at age 46. The gyn saw one cyst on each ovary-both about the same size around 2 or so cm. He said they looked like functional cysts, not something to be worried about. However, I am a little. I am thinking maybe I should get a CA125 done, or more. Don't know what to do. The gyn said he would check it in 3 months. To me, that is just too long given my history. I am going to get tested for BRCA soon, didn't do it earlier b/c my mom was tested twice and both times they were negative. My father had no cancer evidence (br or ovarian). My new onc says I should be tested. I too was worried about getting future insurance, but not anymore. What are your suggestions, anyone. Lost now. Susan email [email protected] and cell 904 716-6221 (Florida)

  • Rosie

    Thank you Barbara for sharing your story. I live in the UK and have been asked about my mother's side of the family on a number of occasions, but only once about by Dad's side and that was just recently by my oncologist. Let's hope that from now professionsals will ask about cancer on the paternal side too and that the next generation of women have the tools they need to ensure the best possible health prospects.

    An aunt and a cousin on my Dad's side died from breast cancer (my aunt about 35 years ago) and another of my Dad's sisters died from bowel cancer, however, eleven months ago my GP prescribed anti-inflammatories for my breast pain and I went away from the surgery feeling so relieved that it was 'not cancer'. In April a routine mammogram picked up some tiny calcifications and since then I have had surgery and am in the middle of chemotherapy. As a large number of nodes were involved (including the apical node) my breast cancer is classed as Stage 3(c) although the tumour itself is Grade 2. Now, a CT scan as part of the staging process has picked up a cyst on one of my ovaries. A CA125 test has come back negative but an ultrasound has not given a clear indication of whether there is a problem so I 've been scheduled for another CT scan as soon as my chemotherapy ends with surgery at that time to remove the ovary that has the cyst.

    It may well turn out that the cyst is benign but as my doctors want to remove the ovary before my radiotherapy (to the breast and collarbone) which I thought was a pretty important thing to get on with as soon as the chemotherapy ends I am feeling slightly nervous. Today was the first time the word ovarian cancer was mentioned but rather than feel too much doom and gloom I just felt that the end of my treatment might not be as soon as I had hoped it would be. It has made me more determined than ever to keep myself well by eating healthily and exercising but am feeling that I may possiblly have a 'fight' on my hands. I don't know anyone who has had surgery to remove an ovary whilst in the middle of being treated for breast cancer, think this makes it slightly scary, also because until after the surgery I won't know whether it is a benign cyst or whether I will then have to be treated for ovarian cancer as well. To read your story Barbara has helped me so much not to feel alone and I wish you and women everywhere the best of health and good times to come.

  • Teresa Ann Brown

    After reading how so many have shared, I feel a bit better. My sister is a breast cancer survivor. But it's hard to take, when you find out your neice has breast cancer.how is this possible,when cancer doesn't run in the family?
    Until now?

  • Julia Chiang Clark

    Barbara, I love your sharing, thank you so much. I had ovarian cancer 2008, thanks God I am cancer free now and like to help other women. I am looking for a supporting group near by my home, I live in Woodbury, MN. Do you have any information about MN ovarian cancer supporting group? My home # is
    651-714-8178, or please sent me a e.mail at [email protected]

    love,
    Julia Chiang Clark

  • Nadine

    I was diagnosed with stage 4 breast cancer in September. I had a hysterectomy the may prior I'm having all the same symptoms yet my liver is clear I came upon this post as I started wondering if it was possible to have both cancers. Rare but yes it is… Thank you for sharing.

National Helpline:
844-ASK-SHARE