Student Looking to learn about Breast Cancer

[emilydoll]

Hello! My name is Emily I am a high school anatomy student doing a year-long project on breast cancer. I want to learn about and understand what it is like living with breast cancer. I am looking to hear about patient stories for people diagnosed with breast cancer. If you're willing to share your story, contact me!

[Hollykins]

Hi Emily! Your project sounds impressive. I was just diagnosed 6 months ago & had my surgery 4 months ago so I am pretty new to the group. One suggestion I have is concerning your use of the word "patient." I'm speaking for myself here but when I hear the word "patient" I think of someone in the hospital or at a doctor's office which is a very small portion of most women's experience living with breast cancer. I might be oversensitive to that word but I might not be alone either.

I am very happy you did not use the word "journey." I know I am not alone with this one. A journey sounds like a trip. With breast cancer there is no visit to the travel agent. The sightseeing is often disappointing. "Journey" seems to be used on material given to women with breast cancer, as in "Your Journey with Breast Cancer." I guess another part of why it bugs me is it makes me feel like somebody is telling me what my life will be like & how I will fit a stereotype.

Now that I've complained about these terms....I would be happy to share my journey...Lol! Is there anything you specifically would like women to write about? Such as: Diagnosis. Surgery, Prognosis, Treatment. Emotions, Impacr on Family, Relationships, Career & Other aspects of life. That might help women focus on the kind of material you are most interested in. Or do you prefer to have women write about whatever they like?

I'm curious where you go to high school. This forum is based in the UK but you will find women from the U.S., Canada & other countries. on here. I live in Saskatchewan, Canada. We have free healthcare so stories from Canadian women will likely differ from those of American women. From what I've read and heard the U. S. healthcare system seems to require alot of insurance company involvement. Even though Canadian healthcare is mostly free it's far from perfect. I think you will find that doctor visits and diagnostic tests are a significant source of stress for most women dealing with breast cancer. Ok. End of lecture! "Chat" with with you soon.

Hollykins

[emilydoll in reply to Hollykins]

Hi Holly! Thank you so much for responding to me, and funny enough throughout my project so far I have encountered people saying "be careful using the word journey!" I am from Menlo Park, California! If you feel comfortable sharing, I am interested to hear about your diagnosis and what have been the greatest challenges dealing with breast cancer. Thanks again!

[mena52]

Hi Emily I was diagnosed in November with Breast cancer & had a lumpectomy in December 2018. I am currently undergoing chemotherapy followed by radiotherapy. I have only had 4 chemo treatments so far and am due another 12. I'm willing to share any information you would like. Good luck xx

[emilydoll in reply to mena52]

Hello! Thank you so so much for responding, I really appreciate it. When did you first find out that you had breast cancer? How was it impacted your life?

[mena52 in reply to emilydoll]

Hi Emily I first found a lump in October 2018. I was in the shower and thought I'd felt something but wasn't sure it was a lump, I believed at the time it was just muscle I could feel. I didn't do anything about it for about 3 weeks and only after I had told a friend who insisted I went to the doctor and came with me. The doctor confirmed it was supicious. I then got an appointment at the Royal Marsden Hospital and went with my boyfriend in November 2018. I had to have 5 biopsies following a scan and ultrasound. The week long wait for the results was the longest ever but I was still convinced it was nothing to worry about. It was confirmed to be cancer and I was booked in for a lumpectomy on 18 December. I was in total shock and did find it really hard to tell my adult children and in particular my 13 year old grandson. I have totally changed my outlook on life now and realise how precious it is and how anything could end it at anytime. I started my chemotherapy in late January as I had a few complications following the lumpectomy and had to stay in hospital longer than usual. I have a total new outlook on life and intend to do the best I can in whatever time I have left. The prognosis is good however I find the chemotherapy treatment very hard. I get extremely tired really quickly, the steriods along with my treatment and lack of activity have made me put on 2 stone in weight and I am quite often dizzy, naseaus and/or sick. I struggle to do the things I used to do. I used to be extremely active, went to the gym and did zumba classes regularly and ate quite healthily although I did have a sweet tooth. I now am not able to go to the gym or zumba as I am far too exhausted most days and I do get breathless because of the chemotherapy so do struggle even going up the stairs. I do try and go out most days for a walk particularly if the weather is good. I don't socialise like I used to because of the risk of infection due to the chemotherapy. I didn't have a great immune system before but its even worse now. I am only a 1/4 of the way through my chemotherapy treatment and still have another 12 rounds to go. Following that I will be having radiotherapy. I still eat healthily although I don't have the sweet tooth anymore. I have been reading lots of books on the subject of cancer and treatments etc and have discovered cancer feeds on sugar cells so I have cut right down on it and hope to go completely sugar free very soon. I don't worry about things like I used to do, having a cancer diagnosis has meant nothing is that important to me now so I don't stress about things. I do find it upsetting that I am losing my hair, my eyelashes and eyebrows but they will grow back in time. My daughter and son were very upset with the diagnosis and my son came over from New Zealand to join us for Christmas. My daughter still worries about me, its not that long ago since a mutual friend whose daughter is friendly with my own daughter, lost her battle with breast cancer and she was quite a bit younger than me (I'm 58). I have updated my will and have power of attorney etc in place so I am preparing should anything happen and I lose the battle. I am fairly ok with it all, I know anything could happen to anyone of us at anytime and I try and stay positive. To me whatever I go through is worth it to tackle this disease and I count myself lucky to still be breathing when there are so many wicked and worse things going on in the world. I hope that answers your questions x

[emilydoll in reply to mena52]

Wow. Thank you so much for sharing your story with me. A big project goal of mine is trying to understand breast cancer from the perspective of the patient, and reading your story has allowed me to do that, so thank you. In times when you are down, what keeps you motivated to keep fighting?

[Tilly101 in reply to emilydoll]

Emily

Your post is two years old an hopefully the cancer is over and done with...

I was interested to read you thought it was a pulled muscle because that is was what l thought will daily visits to outdoor gym for biceps and big strong dog pulling on the leash..

I hope this is just a distant memory for you and you are enjoying life to the full..

Tilly x

[BklynCatwoman]

Hi Emily,

Good luck with your ambitious project. I am a 6 year breast cancer survivor, diagnosed in April 2013, had a unilateral mastectomy and chemotherapy as followup. Since I am a journalist, I wrote a lot about it--essays and poetry. Here's a link to my author page on Ravishly, which lists all of my BC essays (as well as others): ravishly.com/contributors/5364. If you have any questions, I'd be happy to answer them.

Best,

Cathy

[emilydoll in reply to BklynCatwoman]

Hello Cathy,

Thank you for sharing your author page with me. I just read your article "What Being A Breast Cancer Bitch Means To Me." This gave me new insight into living with breast cancer. I thank you for sending your website to me. I will be reading many more of your breast cancer articles. Did you start writing about breast cancer while you were living with it? Was writing an outlet for you to vent during your fight against breast cancer?

[BklynCatwoman in reply to emilydoll]

Glad you liked the BCB piece. You hit the nail on the head: I started writing about BC when I was diagnosed. It was a coping mechanism that helped me come to terms with it. But I also discovered that my essays helped others. Even though they were very personal, they touched upon others' experiences and emotions.

[emilydoll in reply to BklynCatwoman]

One part of my project that I have been struggling with is understanding couping mechanisms for women diagnosed with breast cancer. As a young woman, I find it hard to imagine what it would be like receiving that diagnosis and do not know how I would coup. I admire the way you took something you enjoy doing, like writing, and used it to help you with your fight. An important part of having a condition like such is communicating with others in a similar situation. Your author page allows people to feel a connection to another person with the disease.

[BklynCatwoman in reply to emilydoll]

Thank you! BC is something you can't imagine until you hear your doctor saying those words. I'm glad you feel that I've helped people connect.

[msmuffintop]

I find it very isolating to live with breast Cancer. Most people either assume I am ok or that I am going to get better or are shocked to learn that 2 years out from diagnosis I am still taking a drug (an estrogen blocker) that has significant side effects. They assume I am doing something wrong, like I should have had a more radical surgery or my doctor's an idiot or that I should be going to a foreign country to have alternative treatment.

Everyone who learns I have Cancer (and it's not like I can keep it secret, I <i>look</i> different) either plays little doctor and loads me with unsolicited advice or acts very dismissive with the "You'll be Fine!" emotional shut-down. I was always more introvert than extrovert, but now I avoid people if I can. Of course I still have to work so I am around people constantly and that is very exhausting.

Living with Cancer is more akin to having a chronic disease than an injury. The estrogen blocker I am taking to be most effective, is supposed to be taken for a full 10 years. (Don't know if I will be able to due to the health insurance situation. I recently got cut from my program.) The side effects from the estrogen blocker are not rightly Cancer side effects, but they are Cancer-treatment side effects and they are pretty severe side effects such as joint pain and hot flashes that make sleeping difficult and weight gain. People love to ask me why I got Cancer, what I did "wrong" etc., and also, especially the very young and pretty ones like to say they wouldn't do chemo . . .not that I am asking - they just enjoy saying this to me. For the record I didn't have chemo either, I had radiation, I don't think people sincerely know the difference until Cancer is staring them in the face. People can be very blithe.

On the plus side, (there's a plus side?) Yes. There is. Now that my life is shorter I don't feel compelled to do anything I don't want to do. I spend lots more time in nature running or hiking. I take up new hobbies and sports whenever I fancy. There's no time to wait. You know that old saying "Nobody ever wished on their death bed they spent more time at work" ? It's true. I work as much as I have to, to get by, and not more than that. Two months ago I was training for a trail run and that was way more important to me than working on business and this month I am training for a 5k. I'm really slow, I've actually come in last at a race because running with Cancer is not the same as running without Cancer, nonetheless I enjoy the challenge. I enjoy the scenery. I also have a vague idea that running will build up my bone density that my estrogen blocker is wearing away. Plus I gained a lot of weight, and even though I haven't lost any yet, running seems to have stablized my weight.

[emilydoll]

I am truly sorry for your situation and I wish there was something I could do to help. You have given me new insight into living with breast cancer, aside I think people shy away from talking about. I appreciate the honesty you provided me with your response. Regarding your more positive note, I happy you are living your life how you want. I am an athlete and run quite frequently so I am happy to see that running has helped you. How are you doing now?

[anrean]

Hi. I have had bc in both breasts - 3 primary tumors, no metastisis. Also just got mom's dx today that she has breast cancer. you can reach me at [e-mail]. Stories are much too long to do here.