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If you're someone who has just been diagnosed with cancer, it is overwhelming to deal with all of the information and decisions needed to move forward in your cancer care. It's important to learn all you can and ask questions along the way so that you have confidence in your treatment plan and the team leading you through treatment. Here are a few questions to consider as you start to make decisions:
One of the most important things is confidence in your treatment team. Take time to get your questions answered so that you can make informed decisions. I know that many of you can add to this list, as you learn so much from each other. Share your ideas and suggestions as you coach each other through this experience.
Sheryl M. Ness, R.N.
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I am 82 yrs old and had lumpectomy yesterday. Prior to that Surgeon and oncologist disagreed about : radiation to follow or tamoxfen. Oncologist felt strongly that I should not have radiation.
Surgeon still wants to use radiation.
I am confused.
have triple negative invasive ductal carconoma breast cancer. nodes clear tumors were less than 2cmm had masectomy and am 75 yrs old said chances are this type of breast cancer would not come back but wants me to have chem taxotere/cytoryn would give me 10% to 20% less change of coming back I am confused.
I just have to share with you about today's appointment. I brought up the team subject and it went well. When I came out of the Doctor's office the Social Wroker was waiting for me. She invited my husband in also and she gave us a host of information from support organizations to financial help if needed. She invited us back any time we need her. I do not know how the Dr. did it so fast but it was done. The Dr. also told me to make an appointment with my surgeon (which was done)to get him the loop and all copies of her recoreds will be faxed to my primary Dr. Thank you again for the info and I encourage all who have not already done so to take advanatage of the different disciplines waiting to help.
Thank you/ I am sure this will help me as well as others that are reading the article. I see my oncologist tomorrow and I am going to bring up the subject. Just as you have mentioned I do have pain and have just been putting up with it. Yes, I have a diagnosis of cancer....mestasis to bone from breast cancer. The breast cancer was ten years ago. I am gaining weight, having pain, nauseous almost every day. I will ask for a referral to a nutritionist, pain control, and maybe consider some counseling. In spite of all these things I do keep busy trying to go out at least once a day but with effort. My primary doctor did not find the cancer my oncologist did . She was getting ready to discharge me after five years of folllow up an decided to do a bone scan first and the metasis showed up. I went to Mayo and it was confirmed. Wish we lived closer as I would be going to Mayo. However, I know this is going to be a long journey. To any reading this keep the faith and try to enjoy the things you can. It is what it is. Enjoy each day. But also take the adavice and try to get a team involved I know I am going to do s to try to improve the quality of life I have left.. I am going to fight this as much as I can. Love and peaace to all.
Anna, if you have a diagnosis of cancer, initially your primary care doctor would refer you to an oncologist or hematologist - and they would be leading your treatment plan. The team may include a surgeon, radiation oncologist and possibly a chemotherapy nurse. Other members of the health care team might be a nurse educator, social worker, nutritionist or a nurse practitioner. Once your initial treatment is over, your care may switch back to your primary care physician or team, but it would be important for them to understand your long term follow-up plan and be able to address any side effects you might be experiencing. Pain is important to address, so don't be afraid to ask for a referral to a pain specialist if needed - it is many times overlooked. I hope this is helpful.
Could or would you explain what and how a team is organized. To my knowledge locally I just have my oncologist. I have a primary doctor and surgeon and caradiologist but do not think they communicate with each other. Is it my responsibility to ask different medical people to be a team on my case? It seems each does his/own speciality when I see them. I have made it a habit to get copies of any blood work or scan reports and take it with me for the doctors. However, I do not think they see themselves involved with my cancer. To me it would be very important as when I have a pain or question I do not know who to speak to. A teeam concept would be great
My insurance carrier locks me into their services, no options available. I am putting my trust in them and god that all will be well. Not having a "treatment team" means I need to rely on trust and faith more than interpersonal relationships with a medical team.
I was treat at Mayo for breast cancer and got no treatment plan for after active treatment was over even though I have requested it from many of my doctors. I have to do research on the internet and ask my Dr.'s "Am I supposed to be having these tests" and most of the time they say oh yes you should be??? That is crazy, what about people who have no way to do research and advocate for themselves?
Having just lost my beloved husband of 46 years to Lymphoma, I was given a hysterectomy for stage 1A, grade 2 uterine lining cancer. I survived breast cancer in 1992 and colon cancer in 2003. Neither time did I have any further treatments, surgery only. Now I'm being asked to have radiation for sure and perhaps chemo. Seeing my husband endure 9 rounds of chemo and 14 radiation treatments until he was so weak that he was bedfast the last 2 months of his life, do I really want to put our sons and the rest of the family through this with me? I know I am not able to think straight, it's been 6 weeks today since my husband passed away, so I am relying on doctors and my family to help me decide which way to go. God help us all.
Can you get close to the patient right after he got the brachy treatment?
In the best of all possible worlds, we would all have options. However, owing to the type or rarity of a cancer, our home location relative to medical facilities, or other factors, we cannot always choose our medical personnel. Dealing with medical staff who are condescending, rushed, or just cold can make a bad situation worse. I had to push to be heard, not easy when I was dealing with everything else. Even years later, I remain wary. In one case, a nurse listened and caught the ear of an uncommunicative physician. Putting questions and concerns in writing can also be useful, although not everyone in comfortable with the format. Ideally, Hospital Relations Departments should help the patient, but are also there to protect the hospital stall should they err. Does anyone have other ideas for dealing with situations that cannot necessarily be changed?
I had a PSA score of 8.8 but was advised to have rectum exam which led to biopsy proving malignancy,70% spread, and a score 0f 4/5 and 5/5 a total of 9/10 and so advanced stage. Had to go in for MRI,CT Scan and with suspicion of spread to right leg and pelvic had to go for leg bone marrow biopsy and PEPScan to rule out spread. Finally ended up with advise to go in for Harmone therapy and radiation IMRT.Am now in 4th week. All said and done all the procedures were handled by experts in the field with latest automatic equipments and hence no need for a second round. Of course it involved substantial expenditure uncovered by any insurance but am happy I got the best attention and always felt i am in good hands.Several rounds of discussions with various field experts and more than one in same field and then for treatment had to select another hospital as I had to move out to my sons place and here too I luckily landed at a hospital nearby with all latest facilities plus flexible timings even daily basis.
I am able to bear it proudly and with confidence and I love MAYOs articles.
Learnt a lot.
CANCER IS A DISEASE OF BODY, MIND and SOUL
I encourage cancer patients to "vote with their feet" when it comes to their treatment team. Like many people do, I accepted on faith the oncologist who was referred by my primary care physician. After learning my cancer diagnosis over the phone and being upset about that method of informing me, I decided to vote with my feet and find another oncologist. (I also disliked being told to start chemo with absolutely no education or preparation offered.) I found an excellent oncologist and a much better setting for chemo. It takes extra time and effort to change, but if you feel you're not being listened to or your wishes and needs are not being properly considered, make the change. I found it was well worth it.
Is anyone dealing with ,or has dealt with what they are calling triple negative ,node negative breast cancer which is stage 1b who was advised to have 6 rounds of cytoxin and taxdotere as well as RT when the chemo is finished. I was told from an onco dx test result that I have a 30% chance of distant recurrance without the chemo, 20% with.
I am not happy with the potential side effects but at age 70 with lots of kids and grandkids I would like a long life span. any thoughts thanks
I completely agree that you must have strong confidence in your team. I was diagnosed with primary liver cancer in April. I have never been sick, had no symptoms. I went to my primary dr. because I was itching so badly. He ordered labs and I had elevated liver enzymes. After ultrasound that showed a hemangeomas he referred me to GI dr. All scans presented hemangomas, all labs good except elevated enzymes and ALP. GI dr. consulted w/liver spec. and they ordered biopsy, the hemangeomas is not hemangomas, it's the malignant tumor. Liver Dr. ordered targeted therapy (chemoradiaation). I'm saying all this to say that without this wonderful team of drs, I wouldn't be alive much longer.I'm sure I will have more chemo but at least now I have a chance for life. God is good, prayers are powerful.
I've have chronic leukemia and had chemo many times. After sitting with other cancer patients for many hours and speaking with them about their experiences I have drawn some conclusions that may be beneficial. In 95% of the case, always seek a second opinion at a teaching or not for profit hospital. Some cancer treatment centers are for profit and how they are paid and when by your insurance carrier may influence your treatment. The expression " it's only business" applies though people don't wish to believe it. An insurance company may pay the center faster if they follow the protocols they favor for various diagnoses. It may not be in the best interest of the patient but a non-cutting edge protocol which costs less for the insurance company ,could expedite termination which allows them to make more money by spending less on treatment for the patient.I personally know of a diagnosis of a type of cancer that a treatment center began chemo immediately and a state of the art cancer center( Moffit in Tamps ,Fl)said would have taken a different route. The chemo isn't effective in some cases and appears to weaken ones immune system making them die faster. Have your patient advocate/care provider stay on top of the situation to protect the cancer patient. There are excellent facilities out there but "for Profit" treatment centers make money like medical insurance companies, by spending less on the patient.If they run it to make profit,someone looses for the sake
Is there anyone out there who was successfully "implanted" for brachytherapy? They tried it with me, and attempts at inserting the balloon were so horribly painful that I begged them to stop, which they did. But I'm curious about how others have fared.
When I was diagnosed with leukemia, I was so sick I didn't make a choice...I just took the Oncologist on call that day...and I know it was Divine providence! I have been blessed with the best team of doctors, nurses, and aides that I could have ever chosen, had I had the opportunity. I'll never forget the night the nurse came to the CCU to start my first chemo...she said, "With other types of cancer, you have time for a second opinion or to talk about your options, but with this, you either start treatment right away, or you go to heaven." She was often my nurse once I was moved to the Oncology floor, and we have remained special friends to this day.
I SO MUCH agree with you. I switched my provider after ONE appt with a surgeon (for breast cancer). I knew right away that I was in the wrong place for me. The difference was night & day . . . I had total confidence in my team at the new health care institution I chose to move to after that first disappointing appt. That was the most important decision that I made in those first weeks after being told my mammogram showed cancer. It definitely put me on the right track.
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