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Thread: How to talk to a relative with cancer

  1. #1
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    How to talk to a relative with cancer

    A very close relative of mine has been recently diagnosed with stage 4 cancer, it was very hard at first for me to believe it and to cope with such a bad news, however I have made my peace with it and decided to relocate so we can spend some quality time together (as much as possible given the situation). My concern is how should I react the first time we meet? And the following times? I would like to show my love and support without being too pushy or provoking unpleasant feelings. Has anyone been there before? I'd love to hear your experiences if you had similar worries and how you overcame this "trouble"

  2. #2
    Administrator Top User lisa1962's Avatar
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    Sorry to hear of your relativesí diagnosis. If I may ask, what kind of cancer?

    My suggestion, try to make your visits with your relative more positive than negative without avoiding the fact that he/she is stage IV and the outlook may be grim (depending on cancer type). Let your relative know you are there for him/her in any capacity they feel comfortable with and you are more than happy to help with anything they need assistance with.

    Your relative is fortunate to have a family member willing to relocate to help and to spend quality time with and to make those memories that are precious.

  3. #3
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    She's got ovarian cancer, it has spread to stomach and peritoneum. 62 years old, responding well to treatment, but again, is a very advanced cancer. Others said she is quite sensitive at the moment so they let her open up at her own pace that's why I wouldn't like to trespass her boundaries but I don't want to seem like I am avoiding the topic or not willing to talk about it.

  4. #4
    Moderator Senior User IndyLou's Avatar
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    Hi, Gabriela-

    I'm sorry to hear about your relative and her advanced disease. I think a lot depends on your previous relationship with her--were you close? Did you routinely see each other on a regular basis? Were you a regular part of each other's lives? If so, I think it might be easier to face each other as the relationship you have is genuine. You just need to show the love you have for her.

    When people hear that others have "cancer," I think too often, they treat the person as if they're on their deathbeds, or as if they're contagious. It's possible that palliative care can keep even a Stage IV patient living a relatively routine life for a number of years. I know I felt as if many looked at me like that. I would've preferred that people treated me as if I were still very much alive, because I was!

    Of course, it's possible that the patient, especially one that has undergone harsh treatments, may look sickly and frail. They may be fighting through some physical pain, and they wear that expression in their eyes, even if they don't outwardly show it. That's scary to many friends and people who knew the person before their diagnosis. They may have lost weight, their hair; their face and limbs may have a more gaunt appearance. Their energy level may be diminished. I don't know if your relative has gone that far, since her diagnosis was more recent, but you should prepare yourself.

    After your initial greeting, you will have to find a way to talk about the disease, or at least acknowledge it. Ask them for an update--has she started treatments? How are they feeling? How are they taking the diagnosis? Some patients may want to talk about it, and if they're close to you, they may welcome the occasion to vent. Others may choose to not discuss very much at all, especially if they've been told the disease could be terminal. They may still be trying to resolve the implications of their situation and of their diagnosis. There could be deep, intimate questions or thoughts they have; you will have to discuss at a pace at which they're comfortable.

    Many people feel obligated to offer up the "is there anything I can do?" question to cancer patients. The answer is probably "yes," but they may not have an answer for you at the time. Don't pressure them to come up with things. It's better if you know their situation--do they have families that used to depend on them for care? Do they have pets? Do they have any cleaning or maintenance that might be difficult for them? A casserole may be nice (assuming they're interested in eating), but if you can take the initiative to do some things without being asked, those would be welcomed.

    You might also offer to go with them, or take them to their treatments. An infusion of chemo can take hours...it might be pleasant to have a close friend or relative nearby.

    I hope this helps...I wish you and your relative well.
    Age 52 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

  5. #5
    Dear Gabrielag: My take on this is that it's a non-issue. You're going to visit her, and not her cancer. If she wants to bring it up she will, and if she doesn't want to talk about it then you are making a major faux pas if you, with no personal experience as a cancer survivor, bring it up. In about 7 years working a cancer-only hospice I never brought it up, and the number of people that wanted to talk about it were the exception rather than the rule. In all cases my purpose there was to deliver extreme palliative fuzziness, (<<<avatar), and a lot of patients wanted to know about my dog or talk about the ones they had. In your particular case, seeing as this is a close friend, what did the two of you talk about the last few times you met?? A good gambit would be to ask about more details on a particular relative your aunt's age, and go from there. As additional motivation, whenever your aunt does die, she's going to take a lot of knowledge with her, so if you have any questions, now is the time to ask them. If you are interested in any of her hobbies or her favorite activities, you also need to mine that information now.

    Best regards, DMW....
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  6. #6
    Super Moderator Top User po18guy's Avatar
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    This is such a highly individual topic that a meaningful reply is difficult to formulate. Metastatic cancer can be held off for a time, but almost always seems to surge ahead at some point. Any and all time spent with her would be a plus, but you don't want to walk on eggshells. Neither do you want a sneak peak at her funeral plans. Rhetorical question: What does she believe and how open is she to her current situation? If she believes that death is lights out and she vanishes from existence, then she might be so adventurous as to go skydiving. Conversely, if she believes that death is the door to an eternal life, then feel free to speak of that. You could inquire of family and friends what her take on all of this is, and how open she is to life discussions.

    Honestly, one thing that bugged me is when folks would say "You look great!" I reminded them that no one ever said that until I got cancer (insert uncomfortable silence).
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  7. #7
    Quote Originally Posted by po18guy View Post
    This is such a highly individual topic that a meaningful reply is difficult to formulate. Metastatic cancer can be held off for a time, but almost always seems to surge ahead at some point. Any and all time spent with her would be a plus, but you don't want to walk on eggshells. Neither do you want a sneak peak at her funeral plans. Rhetorical question: What does she believe and how open is she to her current situation? If she believes that death is lights out and she vanishes from existence, then she might be so adventurous as to go skydiving. Conversely, if she believes that death is the door to an eternal life, then feel free to speak of that. You could inquire of family and friends what her take on all of this is, and how open she is to life discussions.

    Honestly, one thing that bugged me is when folks would say "You look great!" I reminded them that no one ever said that until I got cancer (insert uncomfortable silence).
    Well, that explains why your avatar is a picture of the back side of you..........

  8. #8
    Super Moderator Top User Baz10's Avatar
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    My two pennies or cents worth is simply
    Take a cue from your relative, listen to what they say and indeed what they don't mention.
    From this you can formulate at least how any conversations should proceed.
    As mentioned previously, everyone has a unique take on their diagnosis so there is no global panacea as to how one should act and react.
    The lead should be from your relative.
    I always found and still do find it near impossible to put on what I would call an act in that everything is fine and normal as patently it isn't.
    Be who you have always been to your relative and if necessary adapt to what they tell or do not tell you.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  9. #9
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    Quote Originally Posted by Baz10 View Post
    My two pennies or cents worth is simply
    Take a cue from your relative, listen to what they say and indeed what they don't mention.
    From this you can formulate at least how any conversations should proceed.
    As mentioned previously, everyone has a unique take on their diagnosis so there is no global panacea as to how one should act and react.
    The lead should be from your relative.
    I always found and still do find it near impossible to put on what I would call an act in that everything is fine and normal as patently it isn't.
    Be who you have always been to your relative and if necessary adapt to what they tell or do not tell you.
    Barry
    Best advice right here IMO. I would add that don't assume they don't want to talk about it just because they haven't brought it up...they may be wondering what they should or shouldn't say too. And they may want to but don't want to "depress anyone" etc. Maybe you could say (even in a letter/note, which is less confrontational) "hey I feel ignorant of what you may or may not want to talk about, just know that I'm happy to talk or not talk about anything with you, just let me know." That way they're aware it's OK to bring it up if they want.

 

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