Services for Survivors

3cbrca
3cbrca Member Posts: 206
edited March 2014 in Breast Cancer #1
I first have to say that I really appreciate all the women who organized several years ago and created the awareness of breast cancer and forced the legislatures etc to direct more funding to research. I don't know that I would be here today, but for them.

I wonder though if it isn't time to start putting some of that money into Survivor research and services. With so many of us out there, I'm curious to know how well or easily other women have been able to access good quality services for post treatment. Our doctors are trained to treat the disease, but not really to treat the follow-up and they don't have the time to take that on.

I live in the Minneapolis/St. Paul area which is the 13th most populous metro area in the U.S. I also work with cancer researchers so I have access to a lot of information. Even with that, it has taken a tremendous amount of work to put together a "Symptom management" team (lymphedema, excercise, massage therapy, emotional support etc) and I find myself traveling all over the metro area to get these services. Sometimes I'm so tired by the time I get there I wonder if they are worth it.

I know that a lot of women don't need some of the services I do (I've had a few complications and a poor prognosis) but I often wonder what is available to women in smaller towns and even big cities. I've noticed from the postings that we are often the best resources for each other - obviously women aren't getting all the information or services they need from their cancer centers and care teams.

I'd be interested in what other womens experiences have been as they try and put together a life that allows them to "live with cancer".

Sheilah

Comments

  • chenheart
    chenheart Member Posts: 5,159
    #2
    You have certainly raised some interesting points! I am not sure what services are readily available in the area I live in either. The local YMCA, in conjunction with the cancer center here has a FREE 12 week program for cancer survivors called "Well Fit". It includes a trainer, and charts our progress, strength, etc. That is a wonderful morale booster, and of course, great for those of us hoping to regain our strength.

    Aside from that, I know of nothing in my area dealing specifically with the whole "Life after cancer" issues. But then agian, I haven't looked for many, either! I find my support and info here with the sisters who are walking with me...

    That having been said, what has often struck me about the boards and the questions posed, is that it certainly seems that many of us are doing this on our own. I know that I always took 3 or 4 people with me to every drs appointment I had, and they were in the room with me! And if I didn't understand something ( or my b/f didn't) I asked on the spot! I hoped I left nothing to chance, and found out all I needed to know before I left the drs office. Another thing I did was make the chemo RNs my best friends! I had the phone number to the cancer center on speed-dial! ANYTHING that happened which seemed out of the ordinary had me calling! Constipation, hiccups, itchy skin,elevated temp, you name it, I put a call in. They never let me down. I always was able to speak directly with an RN , or one would return my call .

    I think your idea is great, and I appreciate the hard work you are already doing! Bless you! I am not sure just what can be done where I live, but I think it would be a God`send to myriad survivors.

    Thanks for the input!

    Hugs,
    Claudia
  • Unknown
    Unknown
    #3
    It seems the professional community has there hands tied when if come to really providing some kinds of help. They are slow to suggest things that do not have studies to back them up. The discussion boards are great for this and I am always amazed at how responsible "we" are in saying, well this worked FOR ME. Also, the professionals haven't been there. Also, the professionals can't say something will help if insurance won't cover it, because then it should cover it! I have gotten some bum steers from professionals: Some examples. On ONC head nurse told me to take 8 ativan, spaced out, before chemo if I am anxious. Talk about spaced out...8 ativan. I take one and it does the trick. I was also told neurapathy never goes away. Scared me silly. My surgeon told me not to go back to work during chemo, if possible. Working has kept me sane! Also, true story, my first doc told me not to go to a counselor to help deal with dx - he would help me deal with it? And, he said, support groups are just a bunch of people dying. That was so ugly I switched oncs. I asked him for books, he said don't bother, they don't know what they are talking about. My new onc would never say these things. He was just a bad doc. but still, I have learned to be wary of professional advice. He probably taught me the best lesson ever!
    Joyce
  • 3cbrca
    3cbrca Member Posts: 206
    #4
    unknown said:

    It seems the professional community has there hands tied when if come to really providing some kinds of help. They are slow to suggest things that do not have studies to back them up. The discussion boards are great for this and I am always amazed at how responsible "we" are in saying, well this worked FOR ME. Also, the professionals haven't been there. Also, the professionals can't say something will help if insurance won't cover it, because then it should cover it! I have gotten some bum steers from professionals: Some examples. On ONC head nurse told me to take 8 ativan, spaced out, before chemo if I am anxious. Talk about spaced out...8 ativan. I take one and it does the trick. I was also told neurapathy never goes away. Scared me silly. My surgeon told me not to go back to work during chemo, if possible. Working has kept me sane! Also, true story, my first doc told me not to go to a counselor to help deal with dx - he would help me deal with it? And, he said, support groups are just a bunch of people dying. That was so ugly I switched oncs. I asked him for books, he said don't bother, they don't know what they are talking about. My new onc would never say these things. He was just a bad doc. but still, I have learned to be wary of professional advice. He probably taught me the best lesson ever!
    Joyce

    8 Ativan?! I'm glad you're still here!!
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #5
    Hi Sheilah, funny you should ask that. I am reading a book called "The Five Gifts of Illness: a reconsideration by Jill Sklar and it is mentioned in there that there has been little research as to the needs of cancer survivors.

    Your post has left me wondering exactly what do I need. I'm not sure.

    I live in a small town and we have a wellness and balance centre. This is geared for everyone, not just cancer patients. They have all sorts of massages, healing touch, reiki, counselling, infra-red sauna, biofeedback and lots of classes in yoga, tai chi, belly dancing..etc. The gym is about 1 1/2 blocks away. I've been going to the gym and your post made me finally stop by the centre to see what they have to offer. I didn't realize it offered so much and I am definitely going to check some of it out.

    One central clinic that has a variety of healing modalities would certainly be an asset esp in a large city getting it all done in one trip.

    Sounds like a business opportunity for someone.

    I think you're right, the time is now for more research and services for symptom management that are more convenient for those who are not well enough to run all over town.

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