psychological impact of breast cancer
Hi everyone, I am a medical student who will be presenting to a group of doctors and other medical students and residents about some of the psychological challenges that breast cancer victims face. It is important for doctors (and future doctors) to understand what their patients are experiencing so that they can better relate to, and therefore care for their patients. I can't think of a better place to get information than directly from the people who are dealing with the problem themselves. Anything you can add about the psychological impact that having breast cancer has had on you or your loved ones would be greatly appreciated. Thank you, and I look forward to hearing from you all.
Comments
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mentalcancer- It is admirable that you are interested and I hope you get good information BUT you must check with the moderators (look at hte bottom of the discussion board threads for a contact) and ask if you may post any research based questions. There are many researchers who have done good quality research with good statistical accuracy to which you should refer.
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Also -- as a medical student, you should be aware that your institution's Institutional Review Board (IRB) probably expects an investigator to at least submit a request for exempt status -- to determine if your research questions here really are exempt from the need for IRB approval.
I imagine some faculty member is advising you on your presentation? Please speak to that person about the IRB issues.
I know I participated in an IRB-approved, NIH-sponsored study about psychological status after mastectomy -- it was an online questionnaire. The study was mentioned here on BCO, after the investigators received the approval of the moderators.
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I think it's lovely that you have come to ask, and I hope you succeed in your training, we need considerate doctors out there to look after us!
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"mentalcancer", you've posted your question on a forum that's called "Forum: Depression, Anxiety and Post Traumatic Stress Disorder -- Meet and support others who are affected by these issues."
Since this is a public form, it seems to me that you could gather the information you want simply by reading the posts on the threads here and presenting a summary -- with appropriate examples -- to your colleagues. I'll bet we've already answered your question many times over.
otter
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Thank you all for the advice in the right direction. My sincere apologies to anyone whom my post made feel like guinea pigs. I'm not sure how to delete this thread, but I would like to have the thread discontinued and perhaps deleted by a moderator. Good luck to you all.
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Hi mentalcancer,
I don't think it's really necessary to delete this thread.
As Otter said, I don't think there's any problem with you reading through this forum, since it's public and fairly anonymous -- although you shouldn't literally quote anything from here, or use people's membernames (the Community Rules, linked at the top of the page, explain that everything written here belongs to breastcancer.org).
I imagine you've done a PubMed search on this topic, but if not, here's a link to a start:
http://www.ncbi.nlm.nih.gov/pubmed?term=breast%20cancer%20depressionIf you want to contact the Moderators, go to their profile page:
http://community.breastcancer.org/member/56097/profile
and click on "send member a private message" (top right area of that profile page).Good luck, and let me echo Flash in saying it's admirable that you're interested in these issues.
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Welcome, mentalcancer. No need to delete this thread - you have done nothing wrong.
As you can see once you read through some BCO forums, you will realize that it is impossible to make generalizations of any kind about the psychological effects of breast cancer. This is partly because it is such a variable disease, with different degrees of severity, threats to one's life and it catches women at such varied stages of their lives.
There is also often confusion between reactions to the cancer dx itself and reactions due to fallout from the treatment.
It is said that Britain and America are separated by a common language. So often, I think we women on this forum are separated by the common organ cancer. It is incredible how little we have in common sometimes (hence the arguments). The more people understand that, the better. They will treat patients as individuals and not as lobby groups, tribes or labeled people.
I hope your thesis reflects this finding and that health carers use common sense over statistics. In the meantime, read on and I hope the variety of experiences and points of view here are helpful to you. The fact that some may disagree with this post proves my point.
Whoever is reading this and is a doctor: use your eyes and ears and listen to the patient. Don't make assumptions or generalizations. There isn't a "we" - only an "I."
"Athena",
who loathes group-think.
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Dun't know how anyone could come up with such a name as "mental cancer" when asking "breast cancer victims" about their psychological status, that's beyond me !!!!!!!!!!
"Hi everyone, my name is Mental Cancer, and I will be presenting today about some of the psychological challenges that breast cancer victims face"
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Whew... so you have the people that are living on the mountain top - assured of their own ability to master any situation, others floored by the magnitude of the assault against all they thought "stable" in their lives, others in total despair - perhaps these are the sensitive ones... people hurting so darn bad that the words others use cut like a knife... then you have the people that research every single detail... others that become experts in some aspect of the disease, many that simply stand in the middle of their life staggered by the sheer force of the damaging winds of physical change...still others that seem to float to any surface, face up - going on with humor and grace - and like Athena said - you will come to understand there is no common "BC patient". The level of the damaging cuts to each person is different... and the speed of healing often appears to come commensurate with the level of damage... and you will also notice that some face damage far beyond their bodies and minds... relationships, jobs, spiritual connections.
The process of physical healing and care does not in itself dictate the status of the patient's psychological healing and well being. What I mean is that just because the scars are healing, the skin is no longer fried and the joint pain, hot flashes and missing hair has somehow grown tolerable... the inner person may still be grieving and stuck replaying the trauma over and over like a bad tape. The single greatest thing a provider of care can do to help in the healing of the body, mind and spirit is to listen. Ask open ended questions and then wait for the answers - let the person explore the questions they have - and try to avoid giving quick medical responses, but instead take time to educate and be educated. Accept the reality of the symptoms and issues being encountered vs. debating them with a patient who goes home to live it for another 4-6 months before she/he sees you again.
What were the impacts on me? Immediate loss of a sense of security, intense visceral fear, loss of my sense of femininity/beauty, replaced by a sense of being a sick damaged person, loss of control, loss of many physical attributes, taking on of many alien symptoms, feeling inadequate as a wife, loss of privacy, loss of being well, emotional ups/downs. Despite setting my mind to living in a positive mode... it has been a struggle to heal physiologically. Peace is claimed day by day - and sometimes it was minute by minute. Those tolerant, respectful, compassionate, wise people on this site - aware of the priviledge inherent in a site of this type - build a place where others can find shelter from the tsunami hitting their lives. Hopefully, some of those "heros of the club" will speak to you.
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Starbeauty -- I'm pushing the invisible "like" button!
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Luan, I think you are reacting very negatively and dare i say even downright rudely to the original poster here who has come very respectfully and politely seeking information from us, and acknowledges and accepts to work within the limits of what's allowed on forums. I don't at all think this is a sick thread, I think it is very ehlpful and has elicited some excellent and detailed responses. She has chosen her username as we all do, and I think it reflects her interest in the mental influence of cancer, that is not just "Well, your scars have healed nicely so what are you worried about" that we get from some doctors especially our (mostly male) surgeons but also how it messes with our brains and psychological well-being, as we all know it does, or is anyone going to tell me they really enjoyed having cancer? Also for me, and this is just personal, the phrase "mental cancer" could be an expresion of how an unresolved internal emotional issue can fester if not dealt with, but who will do it, it's not the surgeon's job and not the oncologist either, they are just here to keep you alive, or so it seems. Patient alive after 5 years, great, but who gets rated on patient satisfaction and contentment 5 years out?
I guess again it shows how disparate a group we are, how one person relates so differently to a name than someone else. Maybe in your language my username hymil means "silly arrogant cow" or "indigestible lump of lard" but that's not why I chose it., it has a different (much more positive) meaning for me... But then I was taught not to judge by names, since usually they are chosen by parents at a stage when "Redfaced bundle of endless noise and bad smells" might be an apt tag, but you can't really face adult life, still less take your place as First Lady of the US or Solicitor General, called that??
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"Redfaced bundle of endless noise and bad smells"? hymil, were you spying on me while I was going through chemo?
otter
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Hymil, I take back a few of my words in honour of the sisters who sincerely poured their heart out.
Am going to look up "group-think" in the Websters, Ta ta
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Luan, starbeauty is not the only one who is being sincere. Most of us here are. We have to accept that there are widely diverging reactions. For some people, cancer happened to bring with it blessings. Sorry, but that's life. And for others, cancer is not even the worst illness they have.
But then when we say "cancer" it all depends too....are we talking about stage IV with mets to brain,chronic pain and fatigue, a negative prognosis and blindness from Whole Brain Radiation? Or are we talking about DCIS with a lumpectomy and no further treatment? And are we talking about a 30 year-old DCIS patient with no health insurance and no support system plus comorbidities, or a stage IV patient surrounded by the love and support of friends and family and a lifetime of achievements and happiness behind her?
Until anyone can answer the question of who and what we are talking about, there should never be the hint of judgement on whose point of view really matters.
We have to listen to each other just as we ask doctors (mine are all male per my choice) to listen to us. I personally was always happy to hear good reports from my doctors on my healing, but I realize that this may not be true for everyone.
So please, if someone says there was something good about the experience (eg: she got rid of her ugly breasts), they deserve every bit as much respect and deference as someone who says they were devastated. Group think has its dangers.
Edited to add: Re the doctors and healing - but I realize that the physical healing may be small comfort to some in relation to the psychological pain - that's what I meant to say.
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Otter, not you - me! My parents really really didn't like babies. After two, i think they found out what was causing it and stopped, hence no younger sibs.... fortunately the registrar rescued me and made them give me a fairly normal name! But they always used to say "Can you imagine a Prime-minister called Candy?"
Luan, Sorry if i pushed it too, i read a few of your other posts and boy, are you having a stresssful time right now!! I'm a year down the line now from active treatment and I do tend to forget exactly how awful it all is when you're right there in the middle, I hope your endo problems get sorted and if you do end with the antidepressants that you find them helpful, Not all brands work the same so persevere. I think having cancer is a really tough ride for all of us - which is just what mentalcancer was getting at?
this silly arrogant cow
is going off for her supper now, mooooo! -
I am not paranoid. I really am being followed by lobsters.
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hymil - your comment made me laugh. Queen Victoria, who had nine of 'em, called them "frogs." I don't have children but I personally prefer babies to toddlers.
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I think the name "mentalcancer" is pretty funny, but then I think a lot of things are pretty funny. Why post this in the "Depression" forum. The fact that you posted the question in the depression forum along with the name "mentalcancer" looks like bias to me!
some of the psychological challenges that breast cancer victims face ....
Biggest psychological challenge: 1) being diagnosed with cancer (that wasn't hard), 2) undergoing expensive and harsh treatments and 3) still not knowing whether or not you are cured or actually not being cured (depending). That's it in a nutshell for me. The best thing that can be done for patients is to cure the disease! I would rather a sure cure than to have my doctor understand what I am experiencing! Get busy doing your real job!
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Hymil, i quote your post above:
"i read a few of your other posts and boy, are you having a stresssful time right now!! I'm a year down the line now from active treatment and I do tend to forget exactly how awful it all is when you're right there in the middle, I hope your endo problems get sorted and if you do end with the antidepressants"
I object to what you are doing here, I was confiding on another thread of MY choice and to have my words interpreted and repeated in yours is offensive.
intransitive verb 1 : to have confidence : trust 2 : to show confidence by imparting secrets <confide in a friend> transitive verb 1 : to tell confidentially 2 : to give to the care or protection of another : entrust
CONGRATULATIONS, YOU HAVE SHUT ME UP FOR QUITE A WHILE TO COME !!
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Athena, your term "frogs" did not go unnoticed. I would like to see your source quoting Queen Victoria
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Pardon my french...but cancer fucks you up mentally. I am 34yrs old and I can't even buy a house. Well, I can buy a house but should I? I constantly think... am I going to be alive long enough to pay the morgage? Should I even look for a home? I am angry at the people who are having kids and living a beautiful life. Will I ever be able to have children with my husband??? Can I adopt? Will they even let me adopt if I am a cancer patient?? I do not save money nor do I put money into my 401K. What is the point??? I live my life every day as if it is my last day. I try not to think about the past nor think about the future. If I do, I will cry myself into a deep hole of depression. Think about the psychological impact of that.
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Luan, interestingly, that's going to be a tough one because I haven't read about that since childhood. I was a history buff by about age 10. Not so strange - but I was probably the only 10 year old reading voluminous diaries by contemporaries of Queen Victoria because I happened to be interested in that era and in her. In those accounts I read more than once that she said babies looked like frogs (I assume because of how their arms and legs are). I cannot for the life of me remember now who wrote these diaries. I love frogs, though, and I think the comparison is quite sweet, even though Queen Victoria didn't mean it in that way.
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But this is way off topic...(I was weird at 10 too)...back to the more interesting topic at hand...comments on the psychological impact of cancer. I see so far: fear, anger, gratitude, depression. How about stoicism? I have sometimes felt it. Especially about the prospect of recurrence and distant mets, as I was unable to tolerate some of the treatment. No one in the "West" talks much about stoicism. The party line here is "fight" - one keeps doubts to oneself. But elsewhere, exactly the opposite is true.
Stoicism can be one's best ally in illness, especially in life threatening cases where you have already had a near miss. You can't wish it on yourself, though. It either happens or it doesn't. I am very, very stoic about the subject of death even though I strive to be healthy every day. I have too many angles from which I could reach that destination to be otherwise....
Has anyone else been helped or overcome by stoicism?
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I don't know what's going on, but I would be hard pressed to share dark secrets about my most terrifying and intimate feelings and fears with some idiot doctor who names himself mentalcancer and calls us victims. I say get the bus .
Janice
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Luan: Group Think is a reference to George Orwell's 1984. And I think Hymil was extending herself to you and trying to relate to your circumstances. Nothing we write on here is private or confidential. Any one of us could click on your name and read everything you have posted, or do a search and look up your entire history. Afterall BCO owns everything you write on here. They may be your thoughts and experiences but you have given them to BCO and they are no longer "yours"
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Blue, I am really being followed by lobsters too - and I'm not paranoid either!
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The use of the title Mental Cancer is demeaning and offensive. Here's why its demeans. It's not mental, it's physical! ..... some doctors have been known to tell their patients its all in their heads when they can't see the ailment or affects with their eyeballs! Well, I am 57 so I remember this type of practice. Now, the dr have a more sly way of saying take an aspirin and call me in the morning. The victim part is right but some will deny that.
If your going to make efforts on learning about the psychological impact of cancer and sensitivities it can create on a person, lesson #1 choose a better profile name.
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ha ha I'm being followed by Teapots and Strawberries with a Baxter in tow! LOL
Baxter as a little puppy.
10 months now.
Teapot -- rescued from a country road 1 yr now.
Strawberry to Guardian - She chases strange dogs away from our property.... She loves hanging around on the backs of the breakfast table chairs.
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Lobsters??? Well, all I can say is , What do you mean I have ADD? I don't ha...Oh look a chicken.
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Now to the medical student
I had typed out a rant but really what I want to say is listen to your patient. You are probably not the only intelligent person in the exam room.
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