Why do so many "survivors" feel left behind or marginalized?

Brilliant question Scorchy.  I know in the land of BC, I won the lottery. There are hundreds of women who would love to have my stats I'm sure. I am grateful, but I am left emptied.

I don't think any more attention needs to be paid to survivors. I think it's imperative that we find our own way. I recently had a follow up with my physical therapist, and i told her that it was very weird to no longer be the most important person in the room. Not that I liked it. I just got used to things being that way.

After testing that lasted 2 and half months, I was supposedly fine (no invasive found, had 3 pre-cancers). I got back to my life right away. I got back to better, actually. I lived the way one thinks a survivor would live ... to the fullest.

I went in for a prophylactic a year later, and there it was. Invasive. Hidden. I lucked out with treatment, though I did end up with 4 surgeries in one year. This time around, I find relief to be elusive. I cannot get out of this funk. Maybe because there is no cure. I like every other woman with bc, never knows if it will come back. And if it does, I won't be so lucky. Thoughts of recurrence do not permeate my thoughts, but I guess it's really always there. I will never be innocent again. It will never be, "that won't happen to me."

PSTD triggers are everywhere. Heck, I walked into Walgreens, and it smelled like one of the hospitals I had been in. There it all was again. We went away for the weekend, and the last few times I had been in a hotel were for surgery. The last time I had been in a hotel for fun, breast cancer was a foreign concept to me. I had to walk off by myself & cry.

What's missing? Drama. Intensity. An end goal. But I don't look for Komen, BC.org or anyone else to give that to me. I guess it just comes with time. Maybe a dr could have told me I may feel this way. Maybe it would have been nice to know there's no fist pumping. There's no driving away from the hospital for the last time and back to my life. There's just a lot of quiet. I know it's suppose to be good, and I guess that's why I feel like an a** for not appreciating it.

Don't know if that answered your questions. I just know they we're the ones who will help the next graduates through this.

scorchy great question - and no, i do not think enough attention is paid to survivors.  Once you are done with treatment you are expected to move on.  Go back to whatever you were doing pre-cancer.  All my friends wanted to have a "thank god its over" celebration for me.  Over? are you kidding me?  I absolutely do not feel its over. 

Cfdr's post really resonated with me.   After active treatment I feel like i am left alone in the "system" to find the right fix/solution to all my issues.  Im in Canada so my situation may be different then those of you in the US.  My lymphadema contact from the hospital basically took my measurements and pronounced that i don't have it and come back in 6 months to re-measure.  No mention of prevention, massage etc...i figured that all out here on this site.  I had to find my own PT educated in msx because the one they referred me to had ever had anyone wth my type of reconstructive surgery.  I was pre-meno when diagnosed and thrown into menopause at 42 - i am left to manage the flashes, sex/vaginal issues.  My onc never once mentioned bone loss/heart issues, all the stuff i learned here.  I told my husband that between PT, various doctor appts, massage, yoga for strength training, managing fatique and all the rest of it this cancer crap has become a full time job.  Over it ain't.  Add in the fear of reaccurance that many of us live with and this new normal certainly does not resemble anything like my old normal.  I am told the fear lessens over time, i am only a year and a half out so Im not there yet.   However in the back of my mind I am always thinking, ok so if I survive this cancer am I more at risk to get another cancer? whats in my future healthwise? 

my family and my friends have moved on from my cancer diagnosis, yet i live it every day.  Noone wants to talk about it anymore because they all think its over. So I don't complain/discuss any of it.  I use this site, have a few survivor friends who "get it", to help me through

thanks for starting this discussion

THank you for this post Scorchy - I am living in Spain so my responses reflect that.

I don´t understand the word survivor to be honest as I still feel like I am part drowning in a mess of emotions and experiences I cannot get to grips with, one year ago I was worried but still intact, not mutilated and disfigured for ever as I am now and not swallowed up in horrible sensations and feelings and pain and discomfort from the hormones, and radiotherapy.  Surgery was relatively easy to recover from but rads messed it up big time!!! 

I feel traumatised and have regular flashbacks and every thought of the hospital, even writing this, has my heart pounding as though i am in immediate danger.  I looked forward to getting back to "normal" and it was a huge shock to me to find that will NEVER happen, yes I read about the "new normal", but experiencing it is something different, I don´t know where the foundations are and now need to dig some myself when I am feeling tired and fatigued like enver before, non cancer friends etc just do NOT get it at all....even some other forums don´t get it and buy in to the "be positive and have a better prognosis" myth.

What are the books on "survivorship"?  I found Dr Servan SChreiber and a couple of others via other forums but mostly my support has been from a Cancer charity centre in the UK and I had to travel to get it.

My fears come and go, seeing adverts on TV set me off, hearing people diganosed or dying with cancer set me off, news reports on cancer set me off, sometimes I can calm myself at others I am in to full blown terror so that I do not know where to turn inside myself, just a whirling dervish.....what if it gets my brain etc.....!!

I find there is so much focus on getting rid of the cancer and NONE on the person - telling my surgeon about pain and problems post radiotherapy gest zedro response, all they seem intersted in is whether there is evidence of cancer or not, its like the cancer is more inmportant than me and I get forgotten - ME, the woman who feels so battered and bruised, has tried like hell to be brave and strong and cope, finding resources she never knew she had and feeling ashamed at falling apart at other times.......SHE wants attention, not her cancer.  It would REALLY help if there was more information out rter about how DEVASTATING a cancer diagnosis is, as well as the subsequent treatment and that it takes a long time post treatment to process it and feel ok in the world again. Some days I just want to scream to people - ITS NOT OVER YET, I AM STILL LIVING A NIGHTMARE......

Others expect us to get back to "normal" but our normal has gone forever, everything in my life has changed, even my relationship with my dogs as I now need to think about who will look after them if I am not here etc decades before I thought I would need to do that...!

I loathe how breast cancer has become the "best" cancer to have as its so "treatable" when those treatments come with a huge cost to us, self esteem, body image, pain, complications in essential areas of our body like lungs and heart, not to mention physical disfigurement. It has been so prettified and pinked up when in fact it is harsh and brutal to those of us on the inside of the cancer world.......

I just free flowed in my reply, hope you can make sense of it

Interesting notion of eliminating the word "survivor"...sounds like that grates on you the way "cure" does for me.

I did not use the word survivor to describe myself until I was a year past treatment. But even so, it's potentially inaccurate. NED (No Evidence of Disease) is the best term...doesn't imply a forever cure or forever survival.

Maybe we can coin a new term. Nedsters? Neddies? Cancereurs? Canceretics?

When I was early in treatment, I'd see books or brochures about survivorship and not understand why anyone would need such a thing. I figured I'd go through 8 months of treatment, and be fully recovered about 6 weeks later, and put "all that crap" behind me. Maybe 8 weeks at the outside. Hah! I'm a year passed that 8 week mark, sitting at my desk with my eyes wanting to close, having trouble concentrating on my work, a swell spot under my compression camisole, taking a break from the frustration of feeling overwhelmed by my work. Coming on to these boards while fighting the urge to take a nap.

Thank you for starting this thread in a forum where p[eople of all stages can answer. Here are my responses:

Do you feel that there is enough attention paid to the needs of survivors?

I think it depends on whether you are the person who fits the image the pink movement represents: early stage, the breast cancer dealt a blow to your image as a woman and you are, for the first time, confronted with the strong sense of mortality. Generally, this does not speak to me. I had an illness that almost killed me but for surgery, and I have another chronic one that is also potentially life threatening, so although I am early stage I have dealt with my mortality many a time before. Also, I LOVED losing my breasts in favor of smaller, more feminine ones. Walking in the streets I could feel the confidence.

That is, do you think orgs like Komen who tout cure and survival, lend any/enough support to you after the crisis?

I don't see myself in Komen and I don't think Komen represents ME. I don't believe a "positive attitude" changes things. I find Komen sexist. They encourage pliant, "nice" women to grin and bear it. They don't fight for a cure and I don't think it would be in their interest to have one. Their power would be gone. They represent their own political and corporate interests. So very odious is Komen and its ilk that I told almost no one I got BC for fear of being showered with pink shit and silly smiles and noisy runs.

Do you feel that books on the market about survivorship help or hinder you?

They do nothing for me. I can't identify with most. I think the women's movement, where it pertains to breast cancer, has encouraged fear (not just supported and understood it, which is humane and necessary, but actively sought it) and has marketed it by supplying baby toys in baby pink. It has failed to question treatment and failed to more aggressively seek a cure. The Next Best Poison is treated like the Next Second Coming. I wish the BC movement got some balls, like the AIDS movement ActUp.

What's missing from the conversation?

More anger at how little progress has been made. More demands for actual breakthroughs instead of "promising" statistical analyses. It also needs to STOP generalizing about how women "feel" or "don't feel." It has to stop treating us all as wives and mothers. Many of us are neither and we have an identity that isn't predicated on family relationships to others. It has to stop talking about our womanhood and treat us as patients who need a cure, not as suffering half-wits. It has to discourage a sense of victimhood and encourage fight instead. But not fight with the breast cancer but fight for better treatments.

And those little cheerleaders who go on about "living healthy" to prevent recurrence have got to shut up - until we know for sure whether what they are saying has the ability to prevent recurrence.

Oh, and the bc movement has to drop the crummy "fight" and "survivor" catch words which are inaccurate. I'm a patient, and I am not in a battle. I, myself, never declared war and have no weapons. Stop the fantasy role playing and get down to the real business of science in the laboratory.

Also, many women's bc organization encourage hope often over truth. This leads to complacency and a contentment with the status quo - and an often aggressive and hostile reaction against those who question the status quo. It is sexist to whitewash a deadly disease. It also infantilizes us as people.

How much does the concern/fear of recurrence or metastasis occupy your thoughts?

That thought is frequent and it happens often if I experience pain.

Has it ebbed over time?

Yes, definitely. Time is a gentleman, as they say.

Are there PTSD triggers that you experience?

No.

What does survivorship mean, exactly?

I am not a survivor and I hate the term. My life was never even remotely in danger. NO IDIOT DIES FROM STAGE IIB. I am more in danger of crossing the street in Embassy Row, one block from where I live, where I am convinced the residents think their diplomatic immunity will protect them if they run you over - that is how aggressive cars are versus pedestrians. :-)

I could still die from cancer because I could still reach stage IV, at which time I will be doomed, and the term survivor will strike me as even more misplaced and insulting. Catch-all terms like hope will make me want to puke. I'm a patient/former patient and possibly a future patient and casualty of cancer. Once we get all the fantasy language out of the cancer movement we may be closer to a cure.

Much of the discourse is on killing cancer cells, but once they are gone who helps with the person who is--in an odd sense--left behind?

I do not believe in chemo for large organ cancers - the studies show virtually no benefit, and chemo has never been put to the test against placebo for a variety of reasons, including the misplaced sentiment that it would be unethical to deprive patients of chemo. Chemo (killing cells) may buy time for some stage IV patients and may improve QOL by decreasing pain if it causes tumors to shrink; in others, it hastens progression and death. In lung cancer it is almost always useless. I think our cancer treatments are partly based on fear and statistics - not really science. So for now, when possible, my preferred way of "killing" bc cells would be simply to excise them the old fashioned way, through surgery.

Thank you for listening (to my rant :-) )- I'm sure I think differently from most everyone else on this. There isn't much about the bc movement that I don't have utter disdain for. Good luck with your article.

Athena - Like usual, I really enjoyed reading your post. Although I do disagree with your comments about chemo. If I could do it all over again (this is from someone who had no response to chemo) I would still have had chemo as part of my stage III treatment. But I would have changed it to one of the platinum chemos with a parp inhibitor. As a BRCA positive gal I think I would have had a good shot at getting a complete pathological response. Or at the very least, it would have done what the chemo is supposed to do and kill the rogue cells. But that is all part of a different discussion and I don't think it's what Scorchy is looking for.



Scorchy - I'm going to take shot at answer your questions and see if I can describe my feelings.



Do you feel that there is enough attention paid to the needs of survivors? That is, do you think orgs like Komen who tout cure and survival, lend any/enough support to you after the crisis?



The only contact I had with Komen was after my initial dx. I was looking for information on what I should do about a second opinion. Should that doc be an onc, surgeon or some other specialty? Do I get it after I've been completely scanned by the first onc? That just an example of the information I was trying to glean. Got sent to 4 or 5 different people to talk to. Didn't feel like I really had the answers I needed. What I was really looking for was a patient navigator.



Otherwise I didn't see where Komen was of any use to me either as I went through treatment or after I was done and declared NED. I did try to use their support forum once but I was not very confident in what I saw so I never went back. The irony of this is that my brother was on the board of Komen in Seattle for 17 years. He quit a couple of years ago and I think part of it was my inability to find anything useful about the organization for myself.



Where I did find information was the ACS website. I spent hours reading through their information. Had I understood their Reach for Recovery phone support at the time I think I would have called.



Do you feel that books on the market about survivorship help or hinder you? What's missing from the conversation?



I bought one on live after cancer, one on support groups and one on meditation. They helped a little. Glad I purchased them but if I hadn't, it wouldn't have been the end of the world. The problem is that they are books. I needed people. I had questions. I had fears that I needed to voice. I needed reassurance. They were just books so to me they were just references like a dictionary or encylopdia.



How much does the concern/fear of recurrence or metastasis occupy your thoughts? Has it ebbed over time? Are there PTSD triggers that you experience?



When I was stage III it occupied my thoughts on a regular basis. Sometimes it was a daily thought and other times it was a couple times a week. But because of my family history, my sister's experience, my BRCA2+ I knew that it was inevitable. So my thoughts were directed to learning how to live without letting it overtake my life with fear. To understand that it would happen and that it was just another step in my life and not the end of my life.



Since I'm a stage IV'er it hasn't ebbed. But now it is all about progression. Really the same thing that I dealt with as a stage III'er and the fear that some day I would get mets. So now I have them, and some day they will progress. So the battle is how to not let that fear rule my daily life. As for PTSD triggers, they are the appointments when you get delivered news. Is it going to be bad - the mets have become visceral. Or the treatments not working so we have to try something new. That when all the worries come back of how long is it going to take to get this plan in place. Will it work. Will I be in the hospital from the SEs. Will it work but my body can't handle it.



What does survivorship mean, exactly? Much of the discourse is on killing cancer cells, but once they are gone who helps with the person who is--in an odd sense--left behind?



I wish somebody would tell me what survivorship means. I always thought it meant that you made it to the other side. Past tense. I'm a work in progress. And unless they find a cure, I will always be a work in progress. Tied to doctor appointments and treatments for the rest of my life. That doesn't sound like a survivor. And what if there is no evidence of disease for a period of time. Until they have a blood test that says there are no cancer cells in your body then they can kill all the cancer cells they want but I still won't think of myself as cured or as a survivor.



I have always felt left behind. While stage III and as stage IV. There is no forgetting that cancer is part of my life. I just need help figuring out how to live with it on a daily basis. The side effects, mainly fatigue, took away my job. Took away my ability to know how I'm going to feel when I wake up tomorrow. Took away my desire to sleep anywhere but my house since after 2 hours in a bed I'm in pain (I sleep in my recliner). It's trying to take away my gardening, which is extremely important to me. Cancer has been eroding my life and other then the warm, supportive women on BCO and my loving family, there hasn't been anything out there to help me figure out how to either get these things back or what I can do that will give me the same satisfaction.



One last thing. My complaints are not the ladies standing beside me. And their complaints are not mine. In other words, how we are affected is so individualistic that it is pretty darn hard to group us. There are plenty of stage III ladies that were not affected like I was and either never left work or have returned and they feel good everyday. Yes, they do have a new normal but it may just be shades different from the old. Or it might be a couple of colors away from the old. Or it could be on the opposite end of the spectrum. I do get very, very tired of hearing about ladies who have done well after being dx'ed stage III. That is wonderful for them. I mean that will all my heart. But that has not been my path. I have tried and tried and tried. But I still can only plan a few days ahead. And I always have to have a backup plan in case I'm unable to execute the original plan.



Enough. I need to go find some cheese to eat with my whine.



- Christy