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And another family member is diagnosed....

Dawn50
Posts: 115
Joined: Sep 2011

I have been on the lung cancer board for the past couple of years as my husband was diagnosed with non small cell lung caner. He continues his fight. His sister was then diagnosed with leukemia and passed nine months later, my brother's wife was diagnosed with small cell lung cancer and passed nine months later, and now, a week after my sister in laws funeral, my mom has been diagnosed with lymphoma. She hasn't been given any specifics beyond that. She will see an oncologist on the 12th. This world is maddening, cancer is evil!

My mom's cancer was discovered in her bladder and the urologist removed what he could without puncturing the wall of the bladder - he did not think he was able to get it all. From what I read bladder cancers in and of themselves are very rare. Having a bladder cancer as a primary is even more rare. This information would indicate the bladder tumor is a secondary site; which in turn would indicate she is a stage iii or iv? I know, I should wait until she talks to the oncologist but he is the same person who has been treating my husband, his sister, my sister in law - I know he won't tell her every thing unless she asks a zillion questions and she won't ask because she is an ostrich!

I hate cancer!

Rocquie's picture
Rocquie
Posts: 478
Joined: Mar 2013

. . .to another cancer board, Dawn. I'm sorry to hear about so many of your family members being sick with cancer.

If you already know that the Family Oncologist won't tell your Mother everything she needs to know, maybe you could encourage her to seek out another doctor? My doctor is a Hematologist/Oncologist. And since lymphoma is a blood cancer, maybe you could suggest to your Mom that she may get better care with a more specialized doctor? Will you get to go with her? I hope so. If she is an ostrich, someone needs to go with her because she probably won't hear everything she needs to know.

Lymphoma is very treatable and the staging is not the same as for other cancers. Try not to be scared. I am in remission and so are quite a few others here on this board.

Good luck to you and your Mom on the 12th.

My prayers and best wishes,

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1039
Joined: May 2012

Dawn,

Sorry about your terrible journey through so many deaths, so much horrific suffering.

Your reasoning regarding the bladder being the "secondary" site of her cancer(s) seems sound.   Of course, if the doc already said "Lymphoma," that supports your thesis. The remaining question is, did he base this upon the biopsy results, or on seeing a lot of enlarged nodes on a CT ?  My (non-oncologist) docs were telling me I "had lymphoma" before I ever had a biopsy, which were educated guesses on their parts.   The biopsy results will answer this conclusively.  Knowing the answer to this should be as simple as requesting a copy of the biopsy from the doctor.

I have had so many friends and relatives who were "ostriches!"  I can ask them, or a relative, "What type of lymphoma did you have ?"  "Eh -eh --- I don't know" is so often the answer. Or, "What forms of chemo were you treated with?", and the answer is "Eh eh -- I don't know."   This from otherwise intelligent people.  It is utterly stupifying to me.  I cannot understand it in the least.

It sounds like one realtively easy fix would be for someone to go with her to the oncologist, authorized to ask questions for her and with her.   I do this now with a friend who is dying with end-stage prostate cancer.  He is a retired, senior manager from an engineering corporation, but he knows no more about his sickness than I know about the History of Indonesia, or what the most common gasses are on Neptune.  

You do not mention your mother's age, but I cared for my mom during an eight year run with dementia that eventually killed her, and a full power of attorney, with authority to make medical decisions, its the best thing we ever did, years before.

I hope your mom's condition is treatabe and ends in full remission,

max

vexed
Posts: 10
Joined: Aug 2011

Dawn,

     I am sorry to hear about the many troubles your family has had with cancer.  Cancer is truly a family disease: it affects not only the patient but also all those who must play a part in the caregiving.

     I agree with Rocquie and Max. Someone should accompany your mother to her doctors' appointments.  Many people hear the word cancer and they stop listening. And often, they often stop questioning the doctor as to the type of treatment.  Many people, unfortunately, go with the flow.

    Lymphoma is not one disease. There are at least 61 different types of Lymphoma. Each one has a different course of possible treatments, a different timeline, and a range of possible results.  Some of these differences are small and not very meaningful, but some are huge and a difference between life and death.  Someone should be with your mother to hear how the doctor actually describes the disease and the possible treatment paths.  There may be some treatments that would be better (or more tolerable) for your mother.  The doctor may know your mother's medical record, but he or she has not lived with your mother and may not understand her lifestyle and her needs. 

    Good luck!                   Les  

girliefighter's picture
girliefighter
Posts: 206
Joined: Mar 2013

I agree with what has been said by all....First and foremost I would like to suggest that your mother see a hematologist which specializes in blood cancers, your healthcare team is your best defense and it is important that they are experts in the disease that your mother is dealing with. As Les said there are many, many different types of Lymphoma and the treatments vary vastly. However, one thing I have learned is that Lymphoma is becoming seen more and more like a chronic disease such as diabetes, which can be treated and lived with. There are many treatments for Lymphoma which may have little to no side effects, of course depending on your mother's general overall health. I just completed 6 treatments of cvp-r for stage 3 non-hodgkins follicular lymphoma and had very very few problems, kept my hair and actually gained almost 30lbs. There is hope out there for a tolerable treatment and I am hoping that your mother will receive the best that there is to offer her. I am hoping that you will be able to accompany her to her consultations and appointments and help her in this process.

I am so sorry that Cancer has stricken your loved ones so violently and will pray for their health

XXXOOO

Carie

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