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Is there anything you wish the healthcare professionals would have done differently throughout your treatment?

Erin Sullivan Wagner
Posts: 5
Joined: Jun 2009

When I was going through radiation and chemo treatment for my anal cancer in 2008, I wish my caregivers would have had conversations with me about the whole me, not just my tumor they were working to rid me of. I had complications with scar tissue in the vagina, and though I was told that my husband and I should be able to have sex, it always inded with tears and lots of blood. Finally it was dtermined that I needed surgery to resolve the problem. None of that would hve had to have happened. I tried to talk about what was happening. The doctors were uncomfortable with the topic, and didn't broach it unless I did. After I brought it up, they would only say "it sounds like you're dealing with it, and have a good attitude, that's great". I wish the communication would have covered the whole me. I wish they would have asked about the rest of me. I felt more timid, less assertive during that time. I needed them to take the communicative lead.
What was your experience, and what do you wish had been different for you?

tiny one
Posts: 467
Joined: Jan 2009

I don't feel that I was counseled enough before I started treatment. I have rectal narrowing and vaginal shortening from radiation. I had an ileostomy reversal, which I've had a lot of trouble. I haven't been using the dialator everyday like they say to because of pain from the reversal. I didn't realize when I had my surgery and then started treatment that it would take almost one year. That was in Feb 2007, my reversal was in Dec 2007. I'm still having alot of frequency issues from the reversal. I would not have done radiation. I would've gotten a second opinion before I made my decision. I go to a good counselor now. I've had good results from EMDR. It stands for eye movement desensitization reprocessing. The Doctors treat the Cancer, but alot of the mental pain needs to be addressed. My other saving grace is The cancer support group I go to once or twice a week. They have become my second family, they have all been there and understand when the bad days hit. The tears and the feeling of helplessness and you don't exactly know why. The fear of it may come back. I have been cancer free for 2 years. I still worry what if, but don't waste your precious time on the what if's. I am at this stage now, doing the things I love to do. As one of the group members says, there's no experation date on your foot.

newbornbunny
Posts: 15
Joined: Nov 2009

Absolutely not enough information about anything, especially radiation. The radiation process terrified me for two weeks. My side effects have been much worse than the handout described.
Not having anything to eat safely. Anti-nausea diet (from radiation therapy handout) says to avoid fruit, vegetables, dairy products, fats, and fiber.
Being scolded by hospital nurse because I became frantic while in hospital. As it turned out, my oxygen level had dropped so low that I was hallucinating. My room was so close to the nurse's station at hospital that I could hear staff complaining about me. I wore a blood-stained hospital gown for three days. No staff offered to help me wash until the day I went home.
Being assigned appointments with no opportunity for input.
Lieutenant Columbo-type medical treatment: "Just one more thing." Maybe.
Comments from two doctors that I should not be sad or depressed about cancer diagnosis.

A different nurse helped me when my oxygen was low. Radiation doctors have been kind and helpful. However, all I want to do now that I am "cured" is lie in bed and hide under my comforter. I want to retire from my job and disappear.

Erin Sullivan Wagner
Posts: 5
Joined: Jun 2009

Wow, thanks for all that great information in your response. I have more questions for you if that's alright? What is your type of cancer? How long have you been "cured"? If you were to advise them on how to deal with upcoming patients, knowing what you know now, what would you tell them? Not so much what they shouldn't do, but what do you wish they had done? I am shocked really about any doctors telling you that you shouldn't be sad or depressed. How did that conversation happen? As much as you can remember about that, I'd love to hear it. This is the area that I believe needs the most change. When people are faced with the fear of cancer, they need more than treatment for the cancer. It's impossible to not need treatment of the whole person. I was aware of it as I went through treatment, and am wondering how similiar my situation was to others. Did your doctors or nurses ever want to know how you were dealing emotionally? Emotional support, etc. Did anyone ever just want to listen to you? What behind your comment about wanting to lie in bed and hide under the comforter? Do you know what that is? Are you fearful of recurrence? Are you taking anything for depression? If you could have whatever you needed to feel better mentally, what would that be?

newbornbunny
Posts: 15
Joined: Nov 2009

I had three appointments with a social worker, who never dealt with the source of my fear:
I am alone in life--no husband, no children, sibling I am closest to had a massive stroke two years ago and cannot talk. My dog, aged 18, finally had to be put to sleep about four months before I was diagnosed. No therapy, for me, can make up for the lack of family. I was already being treated for depression, but therapy and medications have not helped much. I don't know how meds can change the reality of life--some realities are naturally depressing. I believe that denying the sadnesses in life is to deny the truth about being human. It was disheartening to go to every appointment and treatment alone. I saw sad people waiting for their treatments, but they all had companions.

I cried at appointments with the two doctors. One tried to reassure me later by saying "surgery will cure you." He did say I had reacted in a way that he considered appropriate. (No one in my family for many generations has ever had cancer of any kind. Now I feel old and vulnerable, like everyone else, I guess.) I was crying for myself--and for the other people who also suffer.

Many people seem to believe that a positive mental attitude will cure and even prevent illness. This belief may create the peer pressure to be happy all the time and to deny the sadness of life.

Right now, I crawl into bed because I have diarrhea, bad flatulence, and painful anal tissue as a result of radiation treatments to my abdomen. If I go out, I end up passing gas in public and have to run to the bathroom. Or my "tail" is so sore that I cannot sit. I have received some prescriptions for these problems--but the meds and creams do not help.

I was diagnosed in the midst of the national debates about health-care reform. They made me feel worse, like a drag on society, a waster of money. I have health insurance; I work for the public schools. Other taxpayers pay my medical benefits.

If I could have what I wanted--my brother would recover from his stroke (this will never happen--it was in his brainstem). Since I have lived a quiet life, never married, no children, I probably have not developed the coping skills that other women have developed. My social skills are not well developed. All of the cancer appointments involved meeting many new people. That was hard on me.

I really cannot think of much more now. I am amazed at some of the experiences I had, especially at the hospital. Writing about everything has been therapeutic in a way, but it also is stressful. I hope I have answered your questions. Thank you for your kind answer.

Newbornbunny

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

How are you doing today? I really want to know, your in my heart.

newbornbunny
Posts: 15
Joined: Nov 2009

How I am doing seems to depend on how much trouble I have with diarrhea, anal pain, and gas. I have plenty of meds, all of which seem ineffective. Monday morning I had several experiences of diarrhea and had to miss work--the bathroom is too far away from my desk. I have friends who are a great help to me--and I appreciate the kindness of CSN people. My radiation treatments ended on Nov. 13. I'm hoping the side effects and the scar tissue will go away eventually. Radiation specialist says that they will--in a few months.
Thus far, cancer seems to have affected me in one major way: I want to live the rest of my life in a completely different way (I am 63 and cannot retire yet). But sometime. . . .

newbornbunny
Posts: 15
Joined: Nov 2009

My cancer started out as Stage IA: highly treatable. One doctor said that mine was the cancer to have because it was curable. He said that the hysterectomy would cure me, but that radiation would be good to give me even better odds. After the surgery he told me that no lymph nodes were involved and I was almost home free, just as he had predicted.

Neither he nor the cancer specialist had any idea that my cancer had already spread, before the surgery and before Stage IA, to my lungs and liver. The surgery was August 2009. I had radiation through November 12, at which time I discovered a lesion on my vulva which my radiation oncologist looked at and said was "scar tissue." Within a month, this lesion had grown and become hard.

At Christmas time I ended up in the hospital and found a new doctor. CT scans showed all of the metastases of my cancer. He told the other specialists, who were amazed that I had more cancer. They seemed not to know that a Stage IA endometrial cancer could spread to other organs. I have acquired a special place in medical history, apparently.

The first cancer specialist removed the "scar tissue" on my vulva in February. She told me that it was squamous cell cancer and not genetically related to my other cancers. She wants to do more surgery, to improve the work on my vulva and to remove two lymph nodes, which actually were malignant after all.

Now I am having chemotherapy. I had to retire from my job because I am now too tired to work and I had used up all of my sick leave, plus sick leave donated to me by co-workers. I am very tired. I may have to sell my house and move to a senior apartment facility. My chance of survival went from 88 per cent (survival of five years or more)to 60 per cent (survival of one to four years). On March 17, I have more CT scans to see whether the chemotherapy has done any good. Naturally, I am anxious and afraid.

I wish I could stop thinking about my experience. Cancer diagnosis and treatment are not sure things, yet I wonder what happened to me. My doctors learned something. I stopped posting to this forum about six weeks ago because I was too tired. But perhaps I can leave some "legacy" by writing about my experience. Maybe other women will find my message and benefit from reading it. Best wishes to all of you who post on this forum. If you have any comments, please do post them. I'll check back later.

Newborn bunny

mg's picture
mg
Posts: 1
Joined: Mar 2010

please can you ask yourself if ther is something that you can do to be kind to your self every day and then please can you ask your self if you will do that for your self at least once and then ask again kindly. the reason for asking your self inthis way is to introduce the idea of knowing for your self something kind thta would be good for you in such a way that it is gentle and therefore more easily accepted.

Erin Sullivan Wagner
Posts: 5
Joined: Jun 2009

It sounds like you had a really difficult time. Did anyone ever ask you about the mental pain? How would you have liked them to address the mental pain? If you were to give them advice, how would you tell them to talk about this? They miss such a great opportunity to make a huge difference when they don't care for the whole person.Do you still have tears and feelings of helplessness? How often does that happen? Is there anything in your mind that could have been done differently then to change some of the bad days now? I appreciate all your input. this is an area that really needs the most improvement in caring for patients. I'm glad you have your support groups. It has been shown over and over again that people do better when they are surrounded by others who "get them".

tiny one
Posts: 467
Joined: Jan 2009

The cancer center where I received my treatment and also where my support group is has a counselor there. The oncology nurses are very helpful, they watch for signs of depression and alert the Dr's to problems. The counselor literally saved my life, she talked to me on the phone and helped me the day that I was suicidal. She has alot of resources for someone who is having alot of problems. I went to an outpatient program, that helped also. My oncologist is very atuned to depression, alot of patients have a very hard time. Sometime this is during treatment, but sometimes it starts after treatment is done. I still have what I call dark days. These are the days when the mental pain is bad. The what if's start. My mental pain started when I had alot of physical pain, after my reversal. I had stage 3 colon cancer, one lymph node tested positive. I hope you know that you are in charge. You can say at anytime stop. No more treatment. Knowing this during chemo made it easier to continue. I'm one of the lucky ones whose side effects were very mild. I was able to be very active all during treatment. For that reason I'm proud of myself that I was strong to go through chemo. I go to group to encourage those who aren't so strong. Somedays it's me who is weak. My husband was and still is very supportive of me. He's my strength, he doesn't care about the scars, he just wants me with him. He would always rub my back every nite. It always helped especially when I was having pain. Seems that cancer is kind of always there in the back of our minds if we let it. I am working on getting strong enough to kick it to the curb. You can to.

newbornbunny
Posts: 15
Joined: Nov 2009

Thanks for asking. I am getting over the mental pain. I don't cry anymore. Since I like to know how things work, it helped when the radiation technician showed me how the equipment worked. I was afraid just lying on the table listening to the equipment rumble like heavy boxes being moved. I remember cyclotrons and linear accelerators from elementary school science (Weekly Reader, probably). The thought frightened me. The noise of the radiation machine is just like that of automatic paper towel dispensers, so I get reminders of my experience in some public restrooms. I wish I was a braver patient. More information certainly would have helped. Whenever doctors asked me if I had any questions, I was too stunned to think of any. I was always alone at every appointment and treatment so I had no one with me to think of what to ask. Everything went too fast--but that may be the nature of cancer. There's hardly any time to think.

newbornbunny
Posts: 15
Joined: Nov 2009

Thanks for asking. I am getting over the mental pain. I don't cry anymore. Since I like to know how things work, it helped when the radiation technician showed me how the equipment worked. I did not like lying on the table listening to the equipment rumble like heavy boxes being moved. The noise of the radiation machine is just like that of automatic paper towel dispensers, so I get reminders of my experience in some public restrooms. I wish I was a braver patient. More information certainly would have helped. Whenever doctors asked me if I had any questions, I was too stunned to think of any. Since I was alone at every appointment
and treatment, I had no one else who could have helped me think of questions to ask.
Everything went too fast--but that's the nature of cancer. There's hardly any time to think.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I ask myself all the time if I would truly have done anything differently in the treatment of my cancer, and I've had several heart-to-hearts with my oncologists since my recurrance. With the rare aggressive cancer I have, your only chance of a 'cure' is to knock it out of you in the initial treatment protocol, because if it comes back (and it did for me), your prognosis is very grim. Knowing I had no chance unless I took the most aggressive treatment my body could handle, I let them SLAM me with 9 months of 'optimal debulking' surgery and harsh chemo and radiation that knocked me into remission for 5 glorious months before the cancer reared its ugly head again. Honestly, I would still fight the big fight, even though I did not succeed in a cure. (During my 5 month remission, I spent a week with my family at the beach; had my grandkids here for a week for 'Camp Grandma'; and went to Greece/Turkey/Italy with my husband!)

But, I really wish I would have insisted on tissue assays following my surgery and before my adjuvant treatment. Tissue assays weren't even being considered in 2008 where I had my surgery, although it will be available in 2010 there, (for those who have the $$ to pay for it; insurance won't cover assays.) The assays test various chemos on live cancer cells, while you are still in surgery, and show what chemo drugs will kill YOUR unique cancer. I believe the assays would have shown my cancer cells as having the protein factors that make them chemo-resistant and fast to mutate, and perhaps we would have tried some of the new chemos in my chemo cocktail if they killed my cancer during the assay tests. My chemo oncologist says "Would you have realy wanted to know that your cancer had a 90%+ chance of recurring and that your prognosis was so poor? Would that have made you decide to give up and not even try? Would you have been willing to pay the big $$ for these experimental drugs that insurance will not cover and that have not been proven effective?" And honestly, even if my chances were < 5%, I would have done all of the aggressive treatments to try and be in that lucky 5%. But I also know that I wouldn't have bankrupted my family on such a slim chance, and that decision would cause horrible rifts in my family, so maybe he was right. But I would have liked to have ALL of the information so that I could make decisions with my eyes wide open.

grandmafay's picture
grandmafay
Posts: 1617
Joined: Aug 2009

Hindsight always leaves us with the woulda, coulda, shoulda thoughts. Don't put yourself through that. We all did the best we could at the time. Peace for the new year. Fay

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I marvel now at all the great resources there are for those diagnosed with cancer in many areas. Certainly the use of the computer to just talk things out with those who know how it goes, like this site, certainly make dealing with the emotional aspects of cancer and research work for ourselves so much easier and in doing all of that we have the validation that we aren't the only ones feeling a particular way or asking certain questions. I wish I had that validation way back then when I was first diagnosed 22 years ago.

It also depends of course on the individual doctors you have too I know but today I sure do wish I knew then that if you feel uncomfortable with a doctor then switch, I never even thought that was a possibility back then.

There are whole programs now that address the emotional aspects of cancer and yes the total body experience as well in many hospitals and that should just be a given everywhere that deals with cancer diagnosis and treatment. I can't believe that in the past it really wasn't. I remember distinctly one such experience and I would like to share it if I may.

I was about 5 months out of my bone marrow transplant and had had a bad time, had congestive heart failutre during it and nearly left the planet to name just one, so this one day I was going in to see my transplant surgeon as I was having many side effects, or so it felt. He told me that he could run this test and that test to see if he could figure it out (sounded resonable to me) but then at the end of the appointment he said 'have you ever thought of seeing a psychiatrist?' with a tone and look that negated all he had said before. I felt so invalidated as he was clearly saying 'all of the symptoms are probably in your head' and I knew they weren't.

I started to cry as he was being so insensitive and rude with this accusation and I dug down deep and told him off and went storming out of his office and never went back.

That's one trauma scene that stuck with me I can tell you.

This site does so much for so many, validates those who no one else understands who hasn't been there but here we all totally 'get it'. That is worth it's weight in gold for survivors as you well know.

I hope cancer is behind you now and you can use all that you have learned to help others who might just be embarking on their journey with it now. Blessings, Bluerose

Cindy Bear
Posts: 563
Joined: Jul 2009

I wasn't in treatment, my mother was for uterine cancer.She passed away 4 mos. into "treatment" I wish we had forced her to get a second opinion. I wish when she first started complaining of pain, back, hip, abdominal that we had taken her somewhere else. Her GP had his head up his A** and wrote everything off as old age/arthritis. When she started having a little cough/hoarseness he told her she had a bit of age related asthma. I wish I had gone to the chemo orientation class with my mom and sister. They apparently glossed over the side affects. .. very few, managable blah blah blah. I wish I had requested copies of all records as we went along on this little odyssey and I wish we had asked the doctor up front with my mother in the room what % benefit chemo would really give someone who was stage IV and almost 80.My research points to almost negligable benefit. My sister did ask him about prognosis and he looked at the charts and hemmed and hawed and said,"with recurrence, 15 months. She had no remission and was gone in 4 mos. All that glitters is not gold when it comes to drs. Hers was well known, the head of gyn.oncology dept of a major hospital. He's also a total a** with no bedside manner. Sorry... just had to vent
P.S. Don't buy ginger nausea gum for someone with dentures.. it will stick to their teeth

Cindy Bear
Posts: 563
Joined: Jul 2009

Hi Newborn Bunny. My heart breaks reading your post. Cancer is a lonely business no matter how big our support system is. When we first found out that my mother had cancer, but before all the scans, the Gyn who did the ultrasound and biopsy told us the same thing. "Yeah if you're going to get cancer, this is the cancer to get" A hysterectomy and you'll be good as new. What an a** If I live to be 120 I'll never know why he said that. A month later she was diag. as Stage IV . She had several distant mets... in her lungs and chest. We were told her liver was fine (a couple of spots showed up ..most likely benign lesions or scar tissue they said) After she passed, the same onc. brought up the mets to her liver.. What you mean I said. You told us her liver was fine.. Her liver wasn't fine to make a long story short. Another educated idiot guessing. When I pressed for an answer as to why my mother died, I heard the following. 'Multi-faceted factors, "these things happen" "Sometimes we never know' and so on and so on. Reading your post It sounds like they misdiagnosed you from the get go. Please try to hang in there, be strong. Eat, rest, is there any friend, maybe even a close neighbor or former co-worker that could go to your appts with you? I will be thinking about you. Please write and update us when you can.

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