My sister was just diagnosed last night

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Karenna16
Karenna16 Member Posts: 5
edited April 2016 in Just Diagnosed

Hello all.

Thank God for forums like this. I just got the news late last night on my way home from work that my 52 year old sister was diagnosed with breast cancer. My mom is the one that told me. I couldn't say anything for a few moments.....just tears. We don't know any details at all yet. My sister has learning disabilities and, most likely, has no idea what exactly was explained to her over the phone when she was told her initial biopsy results.

She had a routine mammogram and they saw something suspicious. She had a biopsy last week and the doctor's office called her last evening. She has been scheduled with the oncology specialist.......and that is all I know.

Nobody in our family has ever had breast cancer. My father was diagnosed with GlioBlastoma Multi-form brain cancer in November of 2002. He passed away in September of 2003. His tumor was 5cm when it was discovered. He went to Sloan Kettering hospital in NY for surgery but the tumor grew back within weeks. It was absolutely devastating. I was diagnosed with a brain tumor the same week as he was. My diagnosis was a very rare disease called Cushing's Disease.

Back in 2003, a forum such as this one basically saved my life physically and emotionally. My tumor was removed on 3/3/2003 and I am completely cured.

I am turning to this discussion board to help me and to help my sister. I have not even spoke with her yet. I will be going to her home later today. She has a 14 year old son. He is a precious, beautiful young man. He is also a bit fragile as he is recovering from an illness that lasted a few years. He has just gone back to 'regular' school in January and is thriving. Thank God he is getting abundantly stronger every day as this news is going to, obviously, impact him tremendously.

It's just the three of us living in this area. We have no family.......my mom and brother are 350 miles away. I am going to be the one that will be helping my sister with whatever she needs. I will be going with her to all her doctor appointments and taking notes and advocating for her as comprehending all the medical info will be quite the challenge for her.

I am retired and just working a small part time job......so, I will be available to help her in anyway that I possibly can.

So many thought are running through my brain. I took care of my Dad, along with my brother for 9 months as he became increasingly more ill. It was the ultimate in sadness and despair. I cried every day for a year after his death. He was a beautiful, brilliant, strong, angelic man. Like an Earth Angel.

My oldest brother died at age 38 from complications of diabetes.....he was born with a problem with his pancreas. My uncle died a few months before my Dad.....from brain cancer too. That was my Mom's brother and only sibling. He was an amazing man.....a detective for a prominent police department in New York.

I have started to read here and am soaking up all the info I possibly can to help my sister. I know nothing about her specific cancer yet. I will be taking notes at he doctor's appointments and will help her in anyway she desires.

So, one day at a time.......getting the pathology report and making sure we have copies of everything is the next step.

I don't know how she is going to handle this......initially and throuout the process. She is very strong in many ways.....but also exceedingly vulnerable and handicapped in other ways.

Thanks for listening. I appreciate that this forum exists and I hope to learn from and share with all of you.

We are at step one and need so much more information as of now before even moving forward.

My worst fear is that she will suffer physically and that her son will suffer emotionally.....he has been through a lot in his young life.

Thanks for listening. I did learn one huge lesson when I had my brain tumor.....that an abundance of patience will be necessary in the months ahead.

Thanks again and I thank every one of you for your strength as you go through your own, unique journey.

I hope to have a lot more info this coming week and will share.

God bless.

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  • dtad
    dtad Member Posts: 2,323
    edited April 2016

    Sorry to hear about your sister but welcome to the forum. I think you will find it to be both comforting and full of knowledge. Let us know when you get more facts and we can help you and your sister navigate this journey. Your sister is lucky to have you!


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  • JustJenn72
    JustJenn72 Member Posts: 6
    edited April 2016

    Hi Karenna

    All I want to is hug you. You sound like an amazing person and your sister and nephew are lucky to have you in their lives.

    I'm new here myself and actually waiting for an incisional biopsy coming up soon. So quite frankly from a ....what to expect...or treatment option...or other info....I don't have a lot to offer you. Like you I have come her to obtain more info.

    What I have found here.....lots of information....but also a wonderful group of supportive people.

    While I haven't posted a lot I have read a WHOLE lot. The awesome group here will be able to give you lots of information....because they all face so many different things there is a wealth of knowledge. So I would encourage you to reach out to them ....ask your questions once you have them.

    I'm still in the dark about whether I have BC or not.....hopefully the incisional biopsy will tell me what the other 2 biopsies have not.....but I do know that just hanging around here has helped me remain much more calm.

    The strength you will draw from these great people will help you as you go forward with your sister. That will help you....but it will help your sister as you guide her through the next steps.

    ((((Hugs))))

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  • Tosca
    Tosca Member Posts: 13
    edited April 2016

    You are a wonderful person. Your family is so lucky to have your love and support. Sending you wishes for comfort and strength. I hope this forum will help you as it has me and so many others.

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  • Karenna16
    Karenna16 Member Posts: 5
    edited April 2016

    Thank you tdad and Jenn! Taking the time to respond to my post is appreciated more then you will ever know.

    Tdad, I see that you have been through quite the journey with this illness. I am so hoping that you are feeling well today. It is so kind of you to reach out to help me.....even though you are suffering through this yourself. It seems that you have gone through a ton of procedures in such a short period of time. It must have been exhausting. Your support means the world to me.

    Jenn, I pray that you get good news about your biopsy results. But, either way, thank God, that you did have the test done and will have the necessary knowledge to go forward with. I can only imagine what thoughts are racing through your head and how your heart is pounding as you wait for the results.

    I will be keeping a close eye on your posts and I want to know your results. Patience is going to be a much needed virtue. I do hope that you have family and friends that are by your side.

    I haven't even talked to my sister yet. My Mom told me that she had the doctor spell out whatever the initial biopsy report infohe has. She wrote it down.......her communication and comprehension skills are poor. I have to see her in person to help her explain to me what she has been told so far.

    I have just started reading this board today and already have learned so much. When I got diagnosed with Cushing's Disease in 2002.......a forum like this basically saved my life. You figure out pretty quickly that you have to advocate for yourself as many, many doctors just do not, or cannot give you the level of support and information that you need.

    Thank you again! From the bottom of my heart!


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  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2016

    So very sorry to hear of your sister's diagnosis and so glad you are still here!

    My sister just finished active treatment in February, 2016, but still will have a double MX because of genetics.  I went

    through treatment in 2012 - my mom was also diagnosed with BC in 2014.  It has been one rough ride.

    But my point is, it was very healing to me to be there for my sister every step of the way.  In many respects it was harder

    to watch her deal with it than it was to go through it myself.  But I know my experiences were invaluable to her.

    You will be an amazing support for your sister.  She will get through this.  And it will bring you both much closer together.

    Sending my best wishes to all, Denise

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Welcome, I am sorry about your sister's diagnosis but she's very fortunate to have you. Have you considered genetic testing? You have a strong family history of cancer. You might see if your insurance would consider the full genetic panel for both you and your sister, not just BRCA1 and 2.

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  • Kicks
    Kicks Member Posts: 4,131
    edited April 2016

    As you say your Sis has issues with communication and comprehention, when she goes to her first meeting with Drs while filling out her paperwork as a new patient that ask her to put you (and/or your Mom) on them as someone who is approved to talk with her Dr(s) regarding her information. Because of HIPPA, a close relative (sibling, parent, child, spouse, etc.) does not automatiic legal right to discuss DX, TX, 'anything' with a Dr without the patient's approval. When you go into an appt with her, she is basically giving her approval for you to hear/get/question but that does not go on to cover you being able to call and discuss at other times. There should be a space on the forms where she can give permission to access information by a named person - you. I have both Hubby and our adult Son listed with all of my Drs offices so that they can IF they ever feel they want to (or do actually need to) talk with, get answers about anything going on with me medically legally. They never have as they say I can explain in words/ways they can understand 'whatever' is 'going on' - but it is good knowing that they can if it should become necessary. IF you Sis has a legally court appointed Guardian, then whoever that is already has the ability to seek info for/on her.

    Get a note pad and write down every question when you come up with them between now and when the Dr is seen. (When is ber appt?l Continue to keep writing down all questions when they come up as the more that is known/learned - the more qiestions can come up. Yes, the more learned does bring up more questions but then once it is known, then the questions can be more specific to what she is/will be dealing with instead of so 'general'. It is easy to think of questions and then forget to ask when actually at appointments unless written down. Make a 2nd copy of her/your questions to hand to the Dr. Some of the questions may be able to be answered together as they are closely related and the Dr will know those that are and be answered together. If she/you do not understand the answers - then keep asking until Dr puts the explanation in words that are understood. Take notes but it is possible to 'miss' or misunderstand while trying to write down info. You might want to use your Smart Phone (or a tape recorder) to record what is actually said so that if become confused by the notes (in the future), the actual words as they were said can be reviewed when/if needed.

    At the least, she needs to know the type (DCIS/IDC/ILC/IBC) as there are different TX plans and prognosis for the different types. Also the expected Stage (can only accurately be determined after surgery), the grade, ER/PR and HER2 status are also part of what goes into the appropriate TX plan. If she has health issues, these can possibly effect what the TX plan needs to be. Will there be other Scans (full body MRI/CT with contrast, Bone, PET, MUGGA/EKG, etc.) before starting TX? An Oncotype test could very possibly be in order depending on the other info. As there has been a fair bit of cancers in her family, genetic testing g is quite possibly in order (for you also). Which of her Team is she seeing first - surgeon, chemo or rads Drs and when will the appts with the others be? TX is a Team effort between the entire team, not just 3 different Specialist doing 'their own thang' without an over all plan in effect. It is becoming more common today that neoadjuvant (pre-surgery) Chemo is being done to get better surgical outcomes. (For one type, neoadjuvant Chemo is the SOP.)

    Do not put your Nephew 'down' - he has already proven that he is strong and a fighter. He is young man at 14, not a 'baby' I , obviously, do not know any of y'all so I don't know when he is told rather it should be hi Mom, you, or both together. I do know that he needs to be told once there is a bit more information to tell him BUT he does need to be told and told the truth. If he isn't told by those who can give him the truth - there will be 'someone' who will tell him without actually having correct information as there is no way that others will not find out about his Mom's DX and will fill in with less than factual information.

    Sorry for rambling on so. Hope that at least you gain something that will help.

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  • 1luckyladybug
    1luckyladybug Member Posts: 2
    edited April 2016

    I have also been diagnosed at the age of 35. I am single with 2 teenagers. I have had two surgeries and one withing twelve hours of diagnosis. I now have a seroma..a small healing complication. All I can say so far from my experience is this has been an emotional rollercoaster and the waiting for test results have been the worst.

    As of now I have had to have an echo due to me having previous congestive heart failure and I was told treatment can cause you a weak heart:( They are sending me for genetic counseling on may 4th due to a few family members having breast cancer and how young I am.

    They say they want me to do 5 days a week for 6 weeks of radiation, hormone therapy after and he thinks he wants me to have Chemo which I am afraid to death of honestly! So he sent out for my oncodx? Test to see what kind of numbers come back but then I met with radiology oncology and he said honestly with your age and the size of the rumor your going to need Chemo smh ugh

    I ultimately want to wait for the genetic resultabto come back because I don't want to go through all this and then get results back and have a double mastectomy.... I'm a little confused as if I did need a maectomy if I would still need all these treatments? I kind of need to know because I can't afford heart damage. I rather have them removed if that's the case.

    I can say from experience to be there and support her as I have no one but my kids....don't let her get overwhelmed with people constantly asking her questions or telling her what she needs to do. I have had all of the above and I personally am going through a lot emotionally physically...I don't like to be overwhelmed any more than possible especially when those telling you what you need to do aren't there helping at all.

    Prayers for her, her son, and your family<3

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  • Karenna16
    Karenna16 Member Posts: 5
    edited April 2016

    Thank you all so very, very much for your responses. I went to my sister's home this afternoon to spend time with her and my nephew.

    She was not able to articulate very well what the doctor told her over the phone last night. The only thing she could say was that the doctor wants her to see a specialist 'right away'. And that 'this' is very serious. The doctor told my sister what the initial biopsy results were....but my sister had no idea what the doctor said. My sister is so shy and timid that she did not ask the doc to repeat himself and she did not ask for him to spell anything or to explain further. The doc told her that his office will be taking care of getting the next appointment set for her.

    My sister says she is in pain from the biopsy and wanted to call the answering service for the on-cal doctor for pain medication.

    My sister does not seem very upset at all at this point. She might not be facing the reality of it quite yet. We will tell my nephew as soon as we know more this coming week. I plan on going with my sister to her next appointment...I will definitely be recording the conversation with the doctor.

    My sister has liver problems. She does have some damage to her liver .......probably from taking pain medication for a long time.....or she could just have a bad liver due to genetics. I am wondering how that is going to play out if/when she has to have chemo/radiation.

    Denise, thank you for your reply. I am so sorry to hear about your sister. I really appreciate you telling me about genetic testing. I did not know that was an option for me. I had my mammogram a few weeks ago and all was well. But, they do say that I have 'dense' breasts and that my insurance will cover the ultrasound. I am definitely going to get that done.....make the appointment this week.

    I am very curious about the genetic testing. I know nothing about it. But, thanks to your suggestion, I will call my own doctor Monday and start the ball rolling to see if I am covered.

    1LuckyLady, I am so sorry to hear what you are going through. You are so young. I can imagine how worried you are about chemo with your heart condition. I am saying prayers for you and sending hugs! I know how you feel about waiting for test results. When I had my brain tumor back in 2002..... I had to wait almost 4 months before surgery once diagnosed. There were so many tests to take and the waiting was excruciating.

    Kicks, thank you for your response! I do completely appreciate your advice. I literally have no information yet about my sister's diagnosis. I am going to do everything I possibly can to help her. I am blessed to be retired and available for her and her son. I will find out more this coming week.

    I am bracing myself for yet another journey ahead of me. So many unknowns at this point. I am praying that God keeps me strong and well so that I can take care of her.

    Thank you all again for your responses.

    I will update this coming week for anyone that is interested. I will continue to read this forum and learn about everyone else's experiences.

    You are all in my heart.

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