Counseling availability and importance

[AlaskaAngel]

This thread about the question of receiving counseling raised some questions for me. I'd like to see some numbers. How do you feel about it? Take the poll and see...

Definition of counseling for purposes of this poll:

1. At least 1 hour of instruction about bc diagnosis with time for Q/A per visit
2. More than 1 visit prior to deciding about treatment
3. Directions for finding basic resources (to key books, online sites, videos/DVDs)
4. Direction provided to patient support groups
5. Follow up contact made from provider to patient to see if more counseling is wanted

The polling function won't accommodate multiple questions, so here are the questions. Please post instead your individual responses -- Thanks.

Were you treated at a major cancer center and offered counseling at time of diagnosis prior to deciding about treatment?

Were you treated at a major cancer center and not offered counseling at time of diagnosis prior to deciding about treatment?

Were you treated elsewhere and offered counseling at time of diagnosis prior to deciding about treatment?

Were you treated elsewhere and not offered counseling at time of diagnosis prior to deciding about treatment?

Overall, do you think the level of counseling services you were offered was adequate?

Overall, do you think the level of counseling services you were offered was inadequate?<O</O<O</O

[Donna]

I received nothing that I would call "counselling" - I was only told by each physician what the best option was for my case. The closest thing to it was my oncologist showing me statistics for various options for chemo - with heavy emphasis on the one she recommended.

Donna

[AlaskaAngel]

I was treated for surgery and oncology at a major cancer center briefly and then for the majority of my treatment at a general hospital and clinic in Alaska, and then back to a major center for radiation.

Other than 2 hours initially with a surgeon I did not receive any counseling at any location. I work in the medical environment, and floundered around.

I think the counseling I received was totally inadequate. I found my way by stumbling around on my own, including finding this group. I'm very thankful for this website.

AlaskaAngel

[CLTann]

The questions raised by AA are certainly important and pertinent to BC patients. Unfortunately, I can predict that very rarely would one receive such service. No doctor is willing to spend one hour for a patient regardless the circumstances.

I live and work in a very large and profitable hospital in one of the big metropolitan centers. Even with my professional background, my onc and surgeon never would spend more than 10 minutes with me. At the 11th minute, they would stand up and ready to leave. They are there for profit, the primary purpose of their business. Of course, there are tens of patients waiting to see them too.

This is precisely the reason and purpose of this support group. We can help each other, without the set time limit, to advise and help less informed or experienced with our own personal happenings as our backdrops.

I made my own decision and plan on how to treat. My onc objected to my primary plan but reluctantly accepted my second alternate plan. His plan was the same, run of the mill, standard bc treatment protocol endorsed by American Cancer Society and FDA. Just last week, I changed Fosamax to a nose spray for bone density protection by myself, with my onc's tacit approval.

Doctors are afraid to be out of line lest the patient may sue them. Thats the common top priority. That's how our system works.

[tricia keegan]

AA...good question and one I've begun thinking about myself since finishing treatments. I was offered nothing in the way of couseling but truth be told I don't think I needed it as much then as when tx ended.
I really was'nt prepared for the onslaught of emotions I experienced when that last herceptin was given, or feeling every ache was cancer with no reassurance to speak of.
In terms of when I was first dx I'd have to answer NO...I did not have enough couseling but would have liked more time to ask questions.

[Carol Carlson]

I'm not quite sure how to answer these questions, but here goes.
At the time of diagnosis which was at a fairly large mediacl facility in the Boston area, I received what I would call options and recommendations for treatment... strong on recomendations. Are you asking the questions in terms of counseling as to weighing options and/or support for decisions made ?
Maybe I'm missing something but I'm not sure what you mean by couseling beyond what the medical community offers in terms of treatment options.
Sorry.. I'm going to go back and ready your message again.
Carol

[AlaskaAngel]

Good question. I started this quasi-poll because I think some here who have access to very good medical providers more or less assume most of us do, and I wanted to see whether the problem is related to whether a person is seen at a major cancer center versus other facility. For some the crucial problem is inadequate presentation of information about diagnosis and treatment, and for some it is more in terms of gaining the ability for simply processing the diagnosis itself as a preliminary step. Probably those who get a thorough explanation about treatment options would be thinking more about the need for pschological support, since their cancer center did provide them with the discussions about treatment itself.

When it comes to the psychological support, some need it very early to be able to handle listening to the discussions about treatment options. Others may be more comfortable focusing on the treatment options right away. Some have more support from a circle of people they already know, and some don't. Cancer centers can't do it all.

A number of very educated and sophisticated people at this site clearly recognize the problem and support the need for creating something that is targeted toward helping the newly diagnosed as well as something for the previously diagnosed but newly diagnosed with mets members. Some excellent ideas have been proposed, including leaving flyers for this website at cancer treatment facilities, putting together something that stays current for newbies, etc. Those are all things that can help. But there still are going to be a lot of people who aren't going to get the basics without more help.

If we look at the simple short list of items mentioned as criteria for this quasi-poll, would it be reasonable for us to try to encourage the creation of some kind of minimum standard among ALL cancer treatment facilities to provide them? Or are the suggested criteria so extensive that the average health care provider can't find the means to provide them, and the only places where they would likely be standard would be at high-end health care facilities, where both psychological and instructional support are available?

1. At least 1 hour of instruction about bc diagnosis with time for Q/A per visit
2. More than 1 visit prior to deciding about treatment
3. Directions for finding basic resources (to key books, online sites, videos/DVDs)
4. Direction provided to patient support groups
5. Follow up contact made from provider to patient to see if more counseling is wanted

CLTann has a good point; how realistic is it that very many doctors would have or make the time for basic counseling? But the costs for cancer treatment are major, and the providers are making a lot of money from them. In looking at those 5 items listed above, considering how much money is made from each cancer patient, is that list so much to ask?

Maybe it doesn't take a doctor's time to do some of these tasks. Maybe as part of having standards it would help to identify less expensive providers to handle some of the load. Maybe technology could help too; I would have appreciated even telephone access to some help.

When responding to the poll, it would be best if you could say whether both kinds of support are truly available to you at your medical facility or only one type or neither type, and whether you get your care at a major cancer center or not.

Thanks for raising the question,

AlaskaAngel

[mke]

I was treated at a major cancer center/teaching hospital the first 2 times and will be again on the 3rd time.

I didn't get 1 hour of instruction about bc diagnosis, and don't think I needed it, not even the first time. There were opportunities to ask questions at each visit. I took part in several clinical trials and those were explained in as much detail as I wanted.

As I recall the 1st time, we decided on a lumpectomy right off. The second time there were a couple of visits because the choices were more complicated. For the 3rd we have a tentative plan for bilateral mast. which will be finalized after bone scan etc. I hope to not have to see anyone before I go in for surgery.

The first 2 times I was given a binder of information, there is a surgery information session, the hospital has a lending library with very helpful staff, there is a special new information section for breast cancer right next to the breast clinic, there are seminars for cancer patients. This is at the hospital.

In addition, in the city there is a cancer support center that offers group sessions, yoga, journaling, seminars for patients and family including kids, and assorted other stuff, all free - just register. There is a Gilda's Club (which I haven't used). There is also info research group, they used to be located near me and I used them the first time, but they've moved so I haven't used them recently. I honestly don't remember if anyone at the hospital told me about these things or I just knew about them.

On the first round my red. onc. felt that I wasn't coping well and referred me to the social work dept for several sessions. That was actually quite helpful. He might have asked if I went, and there might have been some question like "how's it going" at a later appt., but I don't remember any in depth discussion.

I did spend time with nurses to go over the details of procedures, each time I think. I did/do have their pager numbers, but I never used them I could call and ask a question of my med. onc. and he would return the call in late afternoon, I did that once.

After each surgery and during chemo I had visiting nurses come to my home to change dressings and monitor my progress and answer any concerns.

I always felt that I got everything I needed and that someone would have responded if I said or otherwise indicated that I needed more. I don't know if it matter to your poll, but I'm in Canada.

[Hopeful]

I was treated outside of a major cancer center for surgery and oncology, and received radiation tx at a major center. While the major cancer center offers support groups, they do not schedule them at times when it is convenient for someone with a 9-5 job to attend. I do not feel I received adequate counseling.

The types of things I think should be covered in counseling are not just tx options, but what the impact of tx is going to be on the patients' life. If the patient is in a relationship, I think it is important to counsel the partner, too. The side effects of all treatments should be fully explained PRIOR to initiating tx, and the patient and the partner should be advised of what the impact of tx will be on their lives i.e., the patient may suffer fatigue to the degree that she cannot keep up with family responsibilities such as driving children to activities, planning family activities, etc., and may need assistance with simple things such as grocery shopping. Depressed immunity may make it inadvisable to be out in crowds, etc. Both parties should also be counseled on the affects of tx on their intimate lives, i.e., vaginal atrophy and how it may effect sexual function. These are not things patients and partners should discover "on their own" and be told by doctors, "oh, yeah, that's to be expected" after the fact. I doubt that patients will refuse treatment because of these issues, but I think knowing about them in advance would greatly reduce stress on relationships.

Hopeful

[Carol Carlson]

I'd like to add to my previous posting that I had contact through the ACS with others that had a similar diagnosis. I can't remember the name of the program, but I had a few people who would call me to give support, sometimes advice and information about resources available. But again this was done throught the ACS.
They were not professionals, just lay people who shared a similar diagnosis, even in terms of being er/pr/ neg her2 pos., tumor size, etc. They also tried to have someone fairly close geographically in case you wanted to meet with them.
It was defiinitely a support oriented program, but there was a lot of information given that I probably would not have known about.Sometimes the best information comes from folks like us and this web site that we get very up to date data as well as the very human " I've walked in your shoes" sharing.
When I was just starting herceptin in '05. I asked one of the nurse practioners about the drug lapinabid ( I know I'm spelling it wrong)
the drug that crosses the blood brain barrier and said she had never heard of it , tried looking it up and couldn't find any information about it. At the time I did give her the correct spelling and that may have been the generic name. Anyway, my point is that if you have access to a web site such as this, you will probably find clear and up to date information that is not always readily available or freely given at a Dr.s office.
I totally agree about the need for everyone to have access to what ever information they may need at time of diagnosis.
I felt a little like I was being herded around from one office to the next.
I now, after 4 years , believe that I made the right choices.
I had little if any post-op. instructions given to me after both surgeries ( partial mastectomy and axillary node dissection ) Fortunatly both me and my daughter are nurses so when my jackson-pratt drain backed up and I had blood-tinged fluid saturating my dressings and clothing we knew what to do.
I had my surgeries and treatment in a major medical facilty in Boston.
Sometimes upon discharge, much depends on who the discharging nurse is
and how busy she/he is.
I guess my other point is that there needs to be at least some "counseling" pre-op. and post-op. Most hospitals will tell you that that is a given..... I'm here to say it is not .....and I've been on both sides of the
fence. I think often times some things are overlooked because medical staff assumes that someone else has done it... or lack of communication
among staff. I don't mean to sound so critical of the medical community, they just need to put their money where their mouth is.
As consumers of health care we need to be super informed, ask questions, write letters, make phone calls and generally be smarter than the average bear .
My I'm awfully long-winded this morning...... guess I haven't recovered from the Patriots' loss yesterday.
Carol
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[AlaskaAngel]

Mary,

Thank you for the info regarding Canada. I don't know how universally true this is so this observation is somewhat subjective, but when this topic was raised at another website, the Canadian and Australian responses did show a higher rate of patients who received much more thorough pre- and post-treatment instruction about medical choices and what watch for, what to expect, when to seek help, etc. The social support and psychological support was about the same as the responses from those in the U.S. It would be interesting to see if that holds true with any responses here.

A.A.