Need Advice From Medical Professionals That Had Relatives Diagnosed With Cancer

[sshaw10060]

A little background: I am a veterinary emergency and critical care specialist working at a large university.

Last week my FIL went into the ER for severe back pain. A CT showed enlarged retroperitoneal lymph nodes. To make a long story short he has been diagnosed with disseminated large B-cell lymphoma.

Obviously, as a medical professional I understand more than my family (it is amazing how little of what the doctors say they truly understand). I am lucky enough to know the head of the lymphoma/myeloma service at my schools medical school and have talked to him a few times as I educated myself about this type of cancer.

Today we had a family meeting with the oncologist, the discussion on recommended treatment went as I expected it to, although they did downplay some of the side-effects more than I would have liked. The thing that got me was the prognosis. The oncologist said "most people with this type of cancer are alive in 5 years". My colleague at the medical school had said that the reported 5-year survival given his staging was somewhere between 30 and 55% with most deaths occurring in the first two years.

In veterinary medicine we are very blunt about prognosis since that frequently affects peoples decision to pursue treatment when they have to foot the bill. I am not sure why, but this has been bothering me all day. There is a part of me that wants to tell my family about this, but the other part says it doesn't matter in the least since I am comfortable my FIL is being treated appropriately.

Any advice would is appreciated.

 

[teskak]

I would suggest you post this question on the Coping & Compassion board as there are many families (with varying backgrounds) who are dealing with cancers and get their reactions.

 

[calypso*a*go-go]

At this point I think you should just keep it to yourself, at least for the time being, as it's going to be difficult for your family to cope with the fact that your FIL has been diagnosed with cancer...maybe give them some time to process the news. (A very "non" expert opinion on my part.)

 

[MrandMissVacation]

I'm sorry to hear about this. It's very stressful.

I had a similar situation three years ago when my dad was diagnosed with stage four (there is no stage 5) lung cancer. I am a nuclear med tech and at the time I was working in the hospital he came into complaining of chest pain. I knew all the doctors. All family looked to me for advice. One part of you wants to share what you know one part of you just wants to be a supporative family member.
I think it's good to be a supporative family member and wait for specific questions. People may be told all the risks and side effects and choose to only remember what they "want " to hear. For example, I knew my dad was going to die, and sooner than later, but he chose to hear and focus on the slim chances of disease management ( and the quality of life during this management). I also had to contend with his wife (not my mom).
Many lay people are overwhelmed with the information. It's the DOCTORS job to clarify, not yours. I know you want to be helpful, but you then place yourself in the "them" (medical) category rather than the us (family) category. You may need to remind them to keep a log of questions for the doc and write down the answers to digest later.

 

[YellowMickeyPonchos]

I agree with everything Michelle said. Maybe because we nuclear techs think alike!

In all seriousness, it might be different if you were a biological child, but you aren't. That is another parameter to consider. My MIL lived for 3 years with stage 4 breast cancer. That is almost unheard of. I kept still, let her plan her own treatment and made sure I was there for them emotionally.

I shared information with my husband and educated him so he was prepared, but that was the extent of my advice.

 

[MrToady]

I work at one of the large cancer centers in the US. The outcome of diffuse large B cell lymphoma and other B cell lymphomas has improved significantly after the introduction of rituximab, a therapy directed specifically at B cells. Fortunately, the survival of patients has been improved now that standard therapy includes this drug, so depending on what study you look at, there may be different survival rates quoted.

Having said that, it is not unreasonable to ask for a second opinion regarding treatment. It is one way to acquire additional professional information.

 

[sshaw10060]

Thanks for all the advice. It's making me feel better about keeping quiet and only answering questions when asked.

 

[sshaw10060]

Double Post

 

[Kellygurlz74]

Hey Scott....

My mother has been dealing with Head/Neck Cancer since last May. It was located in her inner ear the size of a pea & then was found to be in her lymph nodes in her head & neck area. She underwent Chemo & Radiation. She had a very difficult time dealing with the reactions, having being put on a temporary feeding tube & had severe 'burns' on her neck area from the radiation. She overcame it. Unfortunate, she was on a very soft food/liquid diet due to the treatments destroying her muscles in her neck/throat. This past early spring, she was diagnosed again, now being found in the lymph nodes around her breasts, in her breasts & her neck lymph nodes destroyed. She has been in treatment for months now, unfortunately, she has been undergoing chemo, but the treatments have not reacted to the cancer. It's now enlarged to the point of affecting her circulation, causing severe swelling, she has been taking in fluid on her lungs & has now been put on a permanent feeding tube & oxygen. At this point, since the chemo is no longer working, she is now having to look at Test Drugs from National Health Inst (NIH here in Bethesda MD). Last week, we were told there may not be any more they could do for her. My mother thru all of this, still has not given up. Still has her fighting spirit. She is determined to get over this. They are currently giving her 1 more round of heavy radiation treatments with hopes of getting her to NIH again & overcoming this, because she is not giving up.

I'm saying all of this because, never give up. Never doubt. Half of the battle is the fight, the other half is the attitude you take to face it. If my mother wasn't as strong as she is, determined as she is, I wouldn't be able to get thru this as part of her support team. Be there for your wife/partner & your family. My husband, my family & my best friends (Stacy that's you) have been such a support for me to get thru this.

You & your family are in my thoughts.....take care. Kelly

 

[hockeymomNS]

Hey Scott....

My mother has been dealing with Head/Neck Cancer since last May. It was located in her inner ear the size of a pea & then was found to be in her lymph nodes in her head & neck area. She underwent Chemo & Radiation. She had a very difficult time dealing with the reactions, having being put on a temporary feeding tube & had severe 'burns' on her neck area from the radiation. She overcame it. Unfortunate, she was on a very soft food/liquid diet due to the treatments destroying her muscles in her neck/throat. This past early spring, she was diagnosed again, now being found in the lymph nodes around her breasts, in her breasts & her neck lymph nodes destroyed. She has been in treatment for months now, unfortunately, she has been undergoing chemo, but the treatments have not reacted to the cancer. It's now enlarged to the point of affecting her circulation, causing severe swelling, she has been taking in fluid on her lungs & has now been put on a permanent feeding tube & oxygen. At this point, since the chemo is no longer working, she is now having to look at Test Drugs from National Health Inst (NIH here in Bethesda MD). Last week, we were told there may not be any more they could do for her. My mother thru all of this, still has not given up. Still has her fighting spirit. She is determined to get over this. They are currently giving her 1 more round of heavy radiation treatments with hopes of getting her to NIH again & overcoming this, because she is not giving up.

I'm saying all of this because, never give up. Never doubt. Half of the battle is the fight, the other half is the attitude you take to face it. If my mother wasn't as strong as she is, determined as she is, I wouldn't be able to get thru this as part of her support team. Be there for your wife/partner & your family. My husband, my family & my best friends (Stacy that's you) have been such a support for me to get thru this.

You & your family are in my thoughts.....take care. Kelly

Ditto, ditto and again.

My mother in law developed breast cancer at 42 years of age. In her case, it wasn't if it came back, it was when. She fought that disease for 12 years with gut and determination. Unbelievable as it sounds, 1 and a half months after her death, I was diagnosed. I was 35 years old and younger women get more agressive cancers. It really seemed like a bad dream. Initially I wanted everything that could be done and then give me the stats, that being said.
I have just reached 10 years cancer free. A positive attitude and the fact that there is soooo much research being done tells me to advise you to keep quiet.

much love