What Resources Would You Have Liked to Have?

Knowing what you know now about your cancer and its treatment, what resources would you have liked to have, and would have been most helpful in evaluating your treatment options?  What are the biggest obstacles to finding good information about treatment options?

Our Cancer Experience Registry members said:

I would have liked to have had really, really frank (graphic, technical, practical) information on how my sex life could/would change after having a bilateral salpingo-oophorectomy and total abdominal hysterectomy at a young age. I didn't (and don't) need information on "intimacy," I need information on making sexual intercourse painless.

I wish that I had found out about the International Myeloma Foundation (IMF) website once I found out that I had myeloma. This website has been very helpful and insightful. I continue to receive information from the IMF to keep me updated.

Nutritional and homeopathic options to help with illnesses caused by chemo treatment.

I would have liked easier access to information about surgeons.  One surgeon I interviewed treated breast cancer as routine... she had just been transplanted from NYC to FL and was rude and even resorted to calling me names when I asked about lymphedema.  What a waste of time.

The understanding that great sums of money are involved in its treatment and that largely you are on your own in making decisions regarding those choices.

Joining a support group earlier.  The support, knowledge and acceptance of a group of people who all share a similar experience have been one of the best things I have done after being diagnosed.

Excellent websites gave valuable info but it would have been wonderful to have access to a professional immediately upon receiving diagnosis to ask questions and give perspective to the whole picture. The diagnosis is a lot to take in.  Once you have a grip on yourself it would have been very helpful and comforting to be able to reach out and get answers at any time, rather than leaving messages and waiting for callbacks from doctor's office.

One of the issues that would have been really helpful for me was a more thorough education about lymphedema. Not only more thorough, but earlier than midway through my radiation treatment.  I was fortunate to get into a lymphedema study after being diagnosed with lymphedema. Had I been more thoroughly educated about lymphedema and the risk factor, I would have taken more steps earlier to manage the potential of acquiring it. I still may have succumbed to the lymphedema, but I would have given it a better fight and known that I had done everything that I could.  I consider that not knowing anything about lymphedema, or the risk that I was at to get it until well into my radiation therapy, was a disservice to me as a patient and taken far too lightly.

I trusted my physicians 100% and know they were doing all that they could.  The best resource I have found is/was having others that are/were going through the same things as me.  Having someone to compare notes with was very relieving for me.

My surgeon and/or his support team should have referred me to physical therapy and myofascial release to help prevent or alleviate the chronic pain syndrome I was left with after my thoracotomy. I had no guidance from anyone after my follow up visit. Very disappointing to feel alone and not know who to ask for help when in the dark waters of a rare cancer (Thymoma). There needs to be more of a team approach, both medical & holistic as well.

I would love to have known more about the long term effects of chemo and radiation therapies.  I was warned about hair loss, immediate fatigue, loss of appetite and all of the classic side effects, but no one gave me any information on the long term effects.  Much later, 3-8 years, I am still experiencing extreme fatigue, thinning hair, inability to grow decent fingernails to name a few.  However, this information most likely would not have deterred me from going ahead with treatment.  I truly believe because of the treatment, I am alive.  But, I have become very frustrated in continuing to mention these problems to my oncologist to the point that I just don't complain anymore as I feel there is no further steps to aid me.

I would have liked to know about more complementary and alternative treatment options.  Anything that was more NATURAL, less invasive, and worked with the body's own natural defenses.  I would have liked more testing for things that perhaps my body was lacking so I could be more knowledgeable about the choices I could make on my behalf to support those deficiencies.

A medical ombudsman/liaison/coordinator of some sort to accompany me to all meetings with doctors and help me evaluate the information and treatment options available and to be the go-to person during the treatment process for guidance.

I did not have a nurse navigator. It would have been very helpful to have a single face to help guide me through the entire process. Now my treatment center has a doctor navigator to help find the correct treatment for my cancer.

I wish I had been aware of programs at the local wellness center.  I discovered this wonderful support group for Multiple Myeloma only after my stem cell transplant, but I still learn something at the monthly meetings.  I can see that this would have been a great group where my questions would have been answered.  Today, February 25, 2014, is the fifth year anniversary of my stem cell transplant and I remain in stringent remission.  When I can't attend the monthly support group meeting, I really miss the camaraderie I feel when I am there.  It is not a "downer" meeting, although there are many people there at different parts of their myeloma journey.  We laugh a lot!  It is a great place to keep up to date on some of the newest therapies for multiple myeloma, as other people are on new drug regimens or in clinical trials.  Obviously, I hope not to relapse, but I now know a great resource where I can get up-to-date information on what is new in the Multiple Myeloma horizon.  I am also truly blessed to live in Arizona, which has a branch of the Mayo Clinic and the hem/oncs (hematologists/oncologists) who specialize in Myeloma and are involved in research and clinical trials.

More info on the type of cancer, including the grade, etc.  Also it would be nice to have a special calendar for appointments, a list of what cancer you had and the type of treatments you had along with any surgeries. It would make it much easier when you go to other doctors, etc. to remember what to write down what they want to know.

Honesty of ALL pros ALL cons

1) I would have like to known that there were naturopathic options available.  I have spent many hours researching this myself and have found successful options and they are working.  2) I would like to have known that chemo does not work.   3) I would have liked to have known that a plant based diet is a cure for cancer.  4) I would have liked to have known that there were videos out there that help me cure cancer without poison (chemo), these videos are: "Food Matters" and "Forks Over Knives". 5) I would have liked to have known that oncologists are treating symptoms and not curing cancer.  6) I would have liked to have known that a non-pharmaceutical cure for cancer exists.

I found the best resources through other cancer patients/survivors.  Therefore, I advise that everyone go to a Support Group as soon as they are diagnosed.  The group can be for a specific cancer or for all cancers.  You will listen to their experiences, good and bad, and you can ask questions.  You may not even know what questions to ask until you listen to others.  Everything I needed to know, I got from my support group at Gilda's Club.  I heard about all kinds of surgeries, different chemo drugs and their side effects, books to read, oncologists to use, and then I did my research on all the info I heard.  I obtained all the info I needed before I had to make any important decisions. No one and nothing, not even your doctor, can supply you with first-hand knowledge like the people in the support groups.  Find one, and get there as soon as you are diagnosed.  P.S. Don't listen to people who have not experienced cancer themselves.

Support group earlier on.  Support group LED BY PROFESSIONAL.  I went to one led by "non-leaders," who needed better training in group process (not interrupting, not telling others what to do, assuming "ownership" of the group (old members assumed they had more rights than newer ones).  I wish I had considered another treatment center, but I did not know how to choose.  I was too much afraid and in a rush to decide where to get treatment.

I would have liked to have spoken to more women whose cancers were a close match to mine and who were several years out from the diagnosis and living normal lives once more. Many of my decisions during this time were fear based, despite access to knowledge. Now, several years out from my diagnosis, I look back and realize I subjected myself to more aggressive treatment than was probably warranted given the characteristics of my cancer. I would clearly make a different decision on treatment today than I made in the heat of the moment.

As a single parent with cancer, there are several things: I would have liked to have someone to check in on me, either friends or some organization.  It's so easy to get in a rut and do without groceries because of being too tired to get them, or wishing someone would go put gas in the car, or just someone to watch TV with for an evening rather than sitting home with the only company being a teen who stays in her room.  Acquaintances see that the survivor looks pretty good most times, and make vague offers, but it is hard to just call someone up and ask for one of these things.    Someone to help advocate for my child with an IEP when I was in the middle of chemo and not on top of even daily mental tasks.  To go to an important meeting and not be able to be fully competent was hard.    A personal coach, of sorts, for exercise, to check in with and plan appropriate exercise to do at home.  I just made up my own plan, but didn't really know what was best.

I would have liked referrals to the International Myeloma Foundation and the MMRF so I could educate myself about my disease.  I would have liked help in selecting quality information sources as there was too little and then too much information available.  I would also have liked a list of ranked medical centers specializing in multiple myeloma.  It took me over a year to figure out where to go, including the doctor.

The after effects of chemo and radiation, and maybe having a Mastectomy would have been the best option.

Resources about breast cancer for a woman my age (60) when I was diagnosed.  I suppose because of my age, no provider spoke to me about reconstruction options.  No one talked to me about late effects of treatment.  I had accelerated radiation and continue to suffer late effects of that type of radiation.  It is more than 2 years since my diagnosis and I still have deep, internal breast pain in the treated breast.  No one spoke to me about the option of leaving the lump alone.  All providers acted as if I needed to take action ASAP or face dire consequences.  There are days when late effects of treatments feel like those "dire consequences" providers referenced.  I would have preferred treatment specific to my body, mind, spirit, not treatment as dictated by outdated "best practice."   Thanks.

Info about port versus veins for chemo.

I found all the information I needed on the Internet. I used respected sites, which proved to be accurate, so that I wasn't surprised by treatment options or intimidated by terminology, when I met with my surgeon. However, I found that, even when I asked, little information was provided by my primary doctor. It was as though he was afraid of sounding biased toward a particular facility. I was very fortunate that M.D. Anderson has a facility in my city, and that is the facility I used. I've been very satisfied with them.

WRITTEN HANDOUTS for each option.  My oncologist just went on and on and on, blah, blah, blah, and I had no idea, really, what he was even saying because I was so upset and so out of it.  I just ended up doing what he wanted to do.  No choice in the matter because I did not even understand what the options were.

Some information for those multiple myeloma patients who also have Amyloidosis, a protein disease that will soon be (and should have already been) recognized as a cancer.  Many of us have this added disease with our myeloma and are suffering worse effects that are depleting our major organs.  Any information on any research, findings, or just the doctors who are working on this would be greatly appreciated.  Thank you.  P.S.  It is interesting (and sad) that the word myeloma is not recognized in spell check as an acceptable word!@!

I wish that my oncologist knew about the testing that my radiology oncologist ordered -- the Oncotype DX test for DCIS patients.  She didn't seem too familiar with it.  Then I could have had the testing done sooner and not had to wait so long to find out if I need to have radiation or not.

I would like to have known more about having both breasts removed when only one had cancer and didn't realize this until the publicity of Angelina Jolie came out due to her genes that this was a choice.  I would have liked the option to consider having both breasts removed at once rather than have to worry about possibly having the other one done later on when I am older and harder to recover.

Side effects of different medications.

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