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Thread: Questions from carers viewpoint?

  1. #1

    Questions from carers viewpoint?

    Hi,

    I have a family member who has very recently been diagnosed with stage 3 breast cancer - i don't know the exact in's and out's in terms of location etc but i do know i will likely be their primary support person. My understanding so far is neoadjuvant chemo has been discussed with view to surgery though i will be getting a proper update later when we meet face to face. My main thinking is apart from the obvious role in listening, i should also be there to help think critically and help act as an advocate so there is a lot i feel needs to be asked.

    I understand this is going to be very different depending on where in the world you are but things that seem important to know right now are:

    -how open has your medical oncologist been about prognosis?

    -how do you know if your oncologist and their team are any good? Is this just something you get a feel for? over how long? what if they are not?

    -do people go for second opinions on treatment plans or just trust the team knows what they are doing? or to put another way what would prompt a second opinion on treatment if anyone has had one

    -how much support psychologically should be expected along the way?

    -how much education / advice have you had on treatment options / what should be expected?

    -how much of a say have you had in treatment?

    -anything else missing that i should be thinking about?

    I feel like these are the important things that will need to be discussed at some point and want to prepare as much as i can.

    Very grateful for any advice anyone can give, also fully respect everyone here for sharing their experiences and staying strong through tough times. Ive spent the past couple of days reading through peoples experiences and some of the stuff has made me feel very sad but also very inspired with how brave you guys are.

  2. #2
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,352
    Hi, won't comment to much on the list but as a carer the key role and hardest is to respect the wishes of the patient and understanding where they set the boundaries is important. Attending appointments and listening and taking notes so that you can both discuss what you heard as its easy to miss things or miss-interpret.
    What are the treatment options and why are you proposing a particular one, the patient should always have the final say as they will have to sign the consent form and if possible it should be an informed choice.
    Care during treatment is key, so having meals pre-prepared in the freezer, and the list goes on, I am sure others will be along to share their thoughts

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #3
    Moderator Top User IndyLou's Avatar
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    Jan 2014
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    520
    Hello, concerned-

    Speaking as a former cancer patient, I would imagine that it's almost MORE difficult being a caregiver at times, because you're thrown into a situation where you have to interpret the patient, interpret what the medical team is doing/saying, and you're on the outside looking in. What may be perfectly rational and obvious to you, might be vague and irrational to the patient. You have to play part psychologist, advocate, nurse, friend, servant, coach, and perhaps many other roles in your position.

    I'd like to speak to your questions about the medical team. I believe it should be led by a primary oncologist--someone that you see, or will see regularly during the work-up, treatments, and follow-up appointments. That oncologist should be assisted by some good nurses, and quality office staff really help in terms of appointments and billing issues. While that oncologist should serve as a primary contact, they may be assisted by other doctors: geneticists, hematologists, dietitians, pain management specialists, etc.

    Above all, I think the cancer care team should approach the patient holistically. They should be open about questions that the patient and their caregiver have, and should give you options for treatment (assuming options exist.) My oncologist even said that "not treating my cancer was an option," but one he advised against. I think they should be relatively up-front about the prognosis, and certainly about any side effects from the chemo.

    Immediately following my diagnosis, my wife wanted me to explore all kinds of cancer treatment centers, trying to seek out "the best." This was even prior to my first meeting with my radiologist. We had a vacation planned down in Mexico, and I asked the ENT who gave me my diagnosis what I should do about the vacation, if anything. He told me, "enjoy yourself!"

    My wife and I met with my radiologist upon my return. He spent a sufficient amount of time with us, answering our questions, talking about outcomes, next steps, etc. While I didn't fully appreciate what 35 days of radiation meant at the time, I would learn a lot about my disease in the days and weeks to come. I have no doubt that you'll learn much more about your family member's breast cancer, too.

    Needless to say, I was very comfortable with the initial meeting with my radiologist, and both my wife and I agreed that no further exploration was needed. If you're in the US, there are many top-notch cancer centers from which to choose, but there are really good regional and local centers as well. For "basic" or "common" cancers, especially those not in late-stages, I don't think people need to search for the "best" centers. Most of them follow basic national cancer protocols for treatment anyway.

    In cases of rare, or more complex and aggressive cancers, you might want a treatment center that participates in clinical trials. That might be necessary in case your patient doesn't respond to treatment, or has a recurrence following their treatment.

    Information is powerful, both as a cancer patient and caregiver. I would advise to get your information from trusted sources, rather than searching high and low on Google. You have a specific diagnosis, as opposed to some vague symptoms, so your knowledge-gathering can be more targeted.

    Best wishes to you on this journey.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  4. #4
    Newbie New User
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    Hi IndyLou,
    I am interested in how did you look for the best cancer treatment center, as you stated: "Immediately following my diagnosis, my wife wanted me to explore all kinds of cancer treatment centers, trying to seek out "the best.""
    Because I'm from Europe and my relative has been just diagnosed with breast cancer (she's been in a diagnostic procedure for 6 weeks!) and is now waiting for some additional results before getting treated. In the meantime we would like to find the best place to get her treated and we are not sure at what indicators of quality of breast cancer care to look at. The diagnosis was made in a general hospital where they don't offer breast cancer care. We would like to get her the best treatment asap and I really hope you can give me some usefull info. We are looking at major EU centers.
    Would you just recommend to go to the nearest breast cancer center anyway? Or to the one with the highest volume of patients in the region? Or are there any additional quality indicators we should be aware of?
    The recent study on quality of care in breast cancer from the neighbouring EU country is not helping, as there appears all the hospitals are equally successful, but overall the breast cancer survival there is lower than EU average, but still better than in our country.
    Any practical advice would be much appreciated.

  5. #5
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    Posts
    520
    Hello, Mari-

    I am in the US, and my knowledge is more limited of EU facilities. To be honest, I was referred to my ENT and radiation oncologist by my primary care physician. The cancer center was part of a hospital approximately an 8-minute drive from my house. My wife and I met with the radiation oncologist, and were pleased with the information he gave us. He was very forthcoming, and we agreed that it did not make sense to seek other cancer experts. As I said in my original answer, most of the cancer centers in the US follow established protocols for most "common" cancers. I think the difference between centers is the experience of the doctors and medical staffs, and their ability to treat patients and anticipate their holistic needs.

    One thing you might look for are cancer hospitals that participate in clinical trials. I know that pharmaceutical companies that sponsor trials evaluate clinical sites quite extensively, to ensure they follow established treatment guidelines. I'm not suggesting that you should influence your relative to participate in a clinical trial, only that if the cancer center chosen had clinical experience, they might be considered "better."

    Again, I'm not entirely sure if there are any limitations on the hospitals, treatments, or doctors you may choose. If you have the choice, consider phoning their offices for an initial consultation. Have some questions in advance--consider those posted at the following location:

    https://www.cancer.org/cancer/breast...st-cancer.html

    I wish you and your relative a successful journey. Please don't hesitate to check back in with us.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  6. #6
    Newbie New User
    Join Date
    Apr 2019
    Posts
    2
    Thank you IndyLou! We made some appointments for tomorrow and now we hope for the best.

 

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