I don’t know how to talk to her. What to say? Will anything really help?

[MSDHS]

Hi-

This is my first time reaching out to a support group, so I don’t exactly know how much information is needed by way of explanation is needed, but here goes.
 

 I live with my daughter in-law, son and 3 grandchildren (boys 10-13). My daughter in-law has been dealing with cancer for the last 3+ years. At first she was diagnosed with what was believed to be stage 4 breast cancer (Cancer was detected in her breast and small met in her lung.). She went through all of the therapies suggested:

Biopsy, Extensive Chemo, Radiation and surgery  After about a year she had completed all  the necessary  therapy and her next two scans, one PET and one CAT were clear  The next scan showed the lung nodule had returned. It had not been biopsied previously due to a reportedly very difficult location but was assumed to be a metastasis from the initial breast cancer. Her doctors felt very confident that the Chemo etc. would deal with that as well as it seemed to have until it showed up again in her lung.  She insisted on a lung biopsy although Her doctors wanted to begin a 2nd regime for it being a form of the breast cancer  She insisted on an extensive lung surgery to obtain an actual biopsy  The surgery resulted in that mass being diagnosed as a specific lung cancer , which is mutation related, and not of a type of breast cancer in origin  A lobe of her lung was removed and more specific  Chemo and Radiation were administered.  Two more clear scans (all three months apart), and now she is diagnosed with stage 4 Lung Cancer..

She is an amazing woman; very intelligent, extremely well read, knowledgeable, kind and patient.  I just do not know how to talk to her! What to say to say to be encouraging when it all seems so hopeless. All she wanted was to see her boys grow up.  I am sorry for being so long winded with my information, but did not know how much was necessary to be informative.

She will be beginning a trial for this new cancer, but we it is stage 4 and appears in a lot of places. The only hope the doctors say is more time!  Thank you for any advice.

 

 

 

 

[GaryG]

Hi: So sorry to hear about your daughter in law. It takes a special person to take care of a cancer patient.  She seems to be having one bad luck after the other but all is not hopeless till the very end.  Please don't give up.  Seeing that you are from Lutz she must be getting treatment  at Moffitt cancer center. If that's the case, she is in good hands.  My suggestion to you is to ask her to join our discussions like you did. She could engage with patients here and exchange ideas plus benefit from our experiences. Best of luck.

[BridgetO]

Hi and welcome. I'm also sorry to hear about your daughter-in-law's cancer.  I suggest you read some of our posts here if you haven't done so already. You'll see that we have quite a few long term survivors of stage 4. There are a lot of new treatments and more being tested and approved, so many lung cancers are survivable that might not have been just a few years ago.  So don't give up hope and encourage her not to, either.

If you stay with this group for a while, you'll find out that there is life with cancer, that there is humor, that we like to have a good time. Some of us are more private, and some share a lot of personal details. You can pretty much ask us anything and someone ( or sometimes a lot of people) will be willing and able to answer. We're aware of the stigma attached to lung cancer and a lot of us are actively rejecting that, in part by being willing to talk about it.

I hope you can get comfortable here and eventually find ways to talk to your daughter-in-law (and her family) about her illness in ways that work for all of you.

Please keep posting.

Bridget O

 

[Tom Galli]

MSDHS,

Welcome here.

I'm very sorry your daughter-in-law is dealing with lung cancer soon on the heals of breast cancer. Moreover, she's experience a recurrence after surgery and chemo/radiation. Recurrences are a special form of hell; I've had 5 in my treatment history. 

Clinical trials are very important for two reasons: first in lung cancer, they are actual treatments, and second they advance the science in treatment. Here is some information you may find useful on lung cancer clinical trials.

Do encourage your daughter to read our forum. There are many examples of folks diagnosed at stage IV who have very long and fruitful lives. Fortunately, I'm one and in February will celebrate 17-years of life after diagnosis.

Stay the course.

Tom

 

[LouT]

MSDHS,

Tom gave good advice; for your daughter to come to this forum for support.  Being a caregiver or relative of someone with serious illness is always difficult.  We do have a Caregivers Resource Center that can be found here.  In the meantime we look forward to meeting your daughter-in-law so we can offer support based on our own experiences with this disease. 

Lou

[Judy M2]

MSDHS, I'm so sorry for your daughter-in-law's situation. She's been through the wringer. I'm sure her experience has been hard on the whole family. 

There are already targeted therapies for certain genetic mutations. I am on Tagrisso for my EGFR mutation. Is her clinical trial for another less common mutation? 

Lung cancer is scary but has come a long way in the last few years. There are Stage IV survivors here, so there is always reason for hope. I'm one year into my Stage IIIB diagnosis and treatments. 

How to talk to your daughter-in-law? Listen and be there for her. All of her feelings are valid, and so are yours. If she wants to discuss her mortality, that's OK. I know I frightened my sister when I was very sick and recovering from emergency abdominal surgery (due to treatment side effects). I honestly didn't think I would survive and told her I was at peace if I couldn't. But your daughter-in-law has her young children to consider and she may want to express her wishes for their future care. That type of discussion should take place (and probably already has) whether or not she is ill. 

Having said all that, try to be hopeful. The science is rapidly changing and more and more of us are living with advanced stage lung cancer. Your daughter-in-law is welcome to join us and see what that looks like. I wish you all the best. 

[Rower Michelle]

From my experience, it's been helpful to talk to people about what I now consider normal, everyday, mundane things.  Last night I got an unexpected call from one of my dearest friends in NJ.  We spent something like two minutes about my health status, and then he entertained me with updates from his daughters in college.  I'm so grateful that he doesn't treat me any differently, I know if I need to really talk about my cancer he's there for me, but chatting about life in general is the most welcome escape for me.   

[TJM]

You nailed it Rower..

[LexieCat]

Basically the takeaway here is to follow her lead. Not everyone is up to talking about everything all the time. If she’s down, let her be down. Most of us have good days and bad ones. Don’t avoid happy topics, either. Just let her know you’re there to support her in whatever way she finds helpful.