Haven't been on this board for nearly 3 years
 

My daughter Kiri was diagnosed with Stage 2 IDC and DCIS in October 2010, successfully treated at Dana Farber with neoadjuvant chemo, surgery, chemo, radiation, herceptin, and tamoxifen. We thought she was in the clear until yesterday when she went for a CAT scan due to a lingering cough and cold. Turns out there is a nodule on her lung and spots on her liver, which they will schedule a biopsy for.

We are in shock and sick with fear and worry. We haven't even spoken to her yet; her boyfriend texted us during the wait in the hospital last night. He said she would call us this morning. She lives 300 miles away. She's 28. During her first bout, she kept us at arm's length, though I know she loves us. She called her brother here at home last night when she got the results. I imagine she feels somehow safer with him.

Not being in the loop is as painful, if not more painful, than our fears about the cancer, but I know she has to do what she has to do to keep herself sane. She's very independent, very focussed on her work (she's in her fourth year of her PhD program and very dedicated). I just wish she could include us more. I know I sound whiney and self-absorbed, but I am terrified and just want to be with her.

We won't know anything until we get the results of the biopsy. But it's not even information I want, just contact. Still, I don't want to put this kind of pressure on her; it seems terribly selfish, and she has so much more to deal with.

Thank you for being there. I'm sorry I've kept away, but once Kiri seemed to be in the clear, I just wanted to put the cancer behind us. :-'(

Re: Haven't been on this board for nearly 3 years
 

kirismum - I swear I just thought about you today....I was on bco.org and a concerned mom was posting about her daughter and I thought of you...your daughter had almost the exact diagnosis, treatment as I did and I remember your posts so well.
I am so sorry about the news you just received. I am still praying that those spots are b9
I am sure she will reach out when she is ready/able - maybe she wants more information before contacting you. This is such a difficult time for her and everyone handles things differently.
I am so sorry you are going through this worry once again

Re: Haven't been on this board for nearly 3 years
 

Of course we remember you. So sorry you find yourself back here under the circumstances but we will help however we can I recall Kiris' independent streak and how trying it has been for you. Please don't say you are self-absorbed/complaining. You are reacting as anyone would. I can't advise about her behavior but I can tell you that things very often are not what they first seem to be in Cancerland. Every chronic cough is looked at with suspicion, as it should be. But then a scan lights up and conclusions can be jumped to. I won't go into all the details but I got caught up into this scenario and it resulted in unnecessary lung surgery. So I hope she is being treated conservatively and more benign things are being considered. In my case, the scans lit up due to old lung infections
As previously, hopefully she will bring you into the loop in her own good time. You raised one independent gal!! Meanwhile, try not to project too much. Just stay in the present and keep the faith!
Send a private message if you'd like

Re: Haven't been on this board for nearly 3 years
 

So good to hear you say "Keep the faith" again Bonnie. I needed that! She's at Dana again and they're pretty conservative, but if there's a clinical trial that's appropriate, I know they will suggest that to her. The MRI is scheduled for tomorrow at 4:00 and they'll schedule the biopsy after that. Not sure when everything will be done and we'll have results.I am trying to stay in the present and not be such a wimp as I was last time, so she'll feel more comfortable contacting me. I'm a slow learner....;-)

Thanks for being there, all, and I'll keep you posted. Prayers very welcome.

Re: Haven't been on this board for nearly 3 years
 

Hi Kirismum,

When I was diagnosed the hardest thing for me was to tell my Dad. I could handle the diagnosis and the treatments, but not the fear in his eyes. It took me a month before I could bring it up. Perhaps your daughter feels the same. Perhaps it is too much for her to handle your feelings right now.

Over the past 9 years I've read about these scares on both online support groups I belong to, and several times the spots in the lung turned out to be scar tissue from previous infections. And liver spots can be benign as well. So hard as this is, it may still be allright.

I'm keeping everything crossable crossed for you and your daughter.

Hugs

Jacqueline

Re: Haven't been on this board for nearly 3 years
 

I also remember you and your daughter and how unfair it all seemed for her to have this fight at such a young age. I also remember dr Winer visiting her to make sure she was doing well. You are certainly not a wimp, most mums would feel just the same and would prefer to suffer their self rather than having to watch their children in pain.
Please let us know how you both are, I always think about a phrase posted here 'you don't know how strong you are until being strong is the only option you've got'
Praying for all this to be B9
Ellie

Re: Haven't been on this board for nearly 3 years
 

I remember you!

I know nothing is going to stop your worry, but a lot of us have nodules and spots inside us that are nothing. You probably do too, as does your husband, your son, and everybody in line with you at the grocery story. We have as many warts and bumps inside as we do outside.

It's only us lucky cancer patients who are able to see them all because they watch us so closely. I have a nodule in my lung that hasn't changed in years; they think it's scarring from an old bronchitis or pneumonia.

Sadly, I do have liver mets but they were 100% certain it was mets even before the biopsy. The biopsy was just to see if it was still HER2+. It was.

So mom, don't jump immediately to cancer. Previous cancer doesn't mean something new can't be benign. Scarring from infection, hemangiomas, other things are most common, and cancer patients can have benign spots too. I've seen it happen over and over and over again.

The waiting period is very hard on everybody though..

Lets say the worst happens and she does have mets. Well, she's 28 now, so you are right, she definitely doesn't need Mom worrying, crying or and hovering. I think if you can project a calm demeanor when you speak to her, you'll be let in more then if you can't. I am a very independant person myself and cannot stand people who cry near me, who hover, who worry, who behave like I'm incompetent because I'm sick. :)

If it turns out she does have mets, it is crucial that she do it her way. Mets is very different than early stage, almost like a different disease. Once I wrapped my mind around the fact that I had a terminal illness, I stopped putting up with things that I used to just sigh and let go.

Not saying any of this relates to your relationship, but I have drawn lines with family members that I probably would not have done had I not been this sick. I just won't tolerate certain things anymore and told them that - they had to do it my way or not do it. One of them chose "not do it" which doesn't surprise me.

Does your daughter post online anywhere? She may want a private place to discuss the disease and find out what treatment options there will be too, if she does have mets.

Anyway, here is hoping it's all benign and none of this is stuff you'll have to think about. Here's hoping the biopsy is easy for her too! *hugs* Let us all know, okay?

Re: Haven't been on this board for nearly 3 years
 

I think its all been said and I'd echo everything and wanted to say I remember you too and will be sending good thoughts for you all.

Re: Haven't been on this board for nearly 3 years
 

Welcome back and although I am very sorry to have you join us for another round I am confident we can help again. Like the others who responded I clearly recall your story and that of your beloved daughter. I am the mother of a very determined and fiercely private daughter as well so I can relate to your circumstances and feel your frustration. I think perhaps it is your fear that your daughter may not be able to handle at the moment. When we want to wrap them in our arms daughters like ours stop us and hold us at arms length because they do not want to fall apart or weaken. It is how they cope and in this moment it really is all about them, isn't it?

I feel your pain and pray it lessens. Please keep us posted. We understand. Hang in there Mom!

Re: Haven't been on this board for nearly 3 years
 

Hi KirisMum,

I know for myself, I don't talk to my Mom much about my cancer. She is a breast cancer survivor but it was much more treatable. When I personally dealt with losing a child, it almost killed me so I try to protect my mother from that pain. As long as I'm still living life, I don't want her to worry. I try to stay positive and hate to see the fear in my mother eye's now (she has a friend who is HER2+++). The best thing you can do for your daughter is to stay strong and allow her and her doctor's to address any concerns.

Re: Haven't been on this board for nearly 3 years
 

Thank you all so much for your wonderful and caring replies. I can't tell you how much they all help. I feel as if I am living in a nightmare again, just praying to wake up, but with even more fear. I have to keep reminding myself that Kiri is in the best place, has tremendous support, great insurance, and a topnotch fighting attitude. Her boyfriend has been incredible, texting us and keeping us updated. We haven't spoken to Kiri yet, which I completely understand, and I am trying to be as strong and upbeat as her when I text and email her, which I think is helping -- she sent me a funny text earlier on and she went rock climbing with her boyfriend tonight.

She has an MRI of her liver scheduled for tomorrow afternoon, and after that they will schedule her biopsies and then we'll get the results sometime next week.

Will keep you all posted. Thanks so much for being there for me.

Re: Haven't been on this board for nearly 3 years
 

Kiri called me tonight at work. She had just got out of her MRI. She was straight up, laid down the law for me, didn't let me speak. Mindful of my need to let her take control, I stayed quiet and listened. She basically said, "Mom, I have metastatic cancer. It's in my bones, my liver and my lungs. There is no cure for this. I'll be on chemo for the rest of my life and it won't be that long. It's going to kill me. Dr. L's nurse (Dr. L is traveling and won't be back till next week) said that the longest they've had someone on this protocol survive is 10 years. We're meeting with Dr. L next Thursday and I suggest you guys be up here." That was it, in a nutshell.

I stayed calm and didn't freak out. Now I understand the gravity of the situation, but I wanted to tell her I thought things were more complex than she was laying out, given the advances in stage iv bc treatment over the past couple of years. But I know she must have been partially in shock, even though we were expecting it would turn out to be mets. They haven't done the biopsies, but apparently everything fits the mets category. Anyway, after she hung up I sent her a text saying that we were behind her 500% in whatever she needed or wanted, but that she should plan to live with whatever time was gifted to her. Live to the utmost. Don't plan to die.

She doesn't go on the boards and she doesn't do research. She leaves that to her medical team, whom she trusts absolutely, and I think with good reason. I'm interested to hear what her onc has to say, but I have to be careful the way I word my questions so that I don't make K look wrong.

What are your thoughts about any of this, dear ladies?

Re: Haven't been on this board for nearly 3 years
 

Well, I am shocked and sad to hear this. I almost don't know what to say. I feel as if I am hearing it the way you did, the way she laid it out. And another part of me, the little girl that never ever goes away no matter how old one is, tells me that there will be a day when she lets down the barriers and just wants her mom. Pure and simple and basic. And you will be there for her
Biopsies still need doing, yes? Keep the faith no matter what

Re: Haven't been on this board for nearly 3 years
 

KrisMum,

I'm so sorry about your daughter's recurrence and mets situation.

She needs some time to do her own grieving, to digest the shock, and to process her feelings besides taking care of her daily living/work/relationship ...

For a 28-year-old, that's a lot to take in/deal with.

There is a young survivor's group http://www.youngsurvival.org/ that she might feel more comfortable to join. (Did she ever check out the group during her first diagnosis/treatment?)

Having cancer at a younger age is indeed more dangerous as the cells are typically fast-growing. But there are survivors out there. She may also want to contact Imerman Angel's http://www.imermanangels.org/to get a matched one-on-one peer support.

Sending you both good vibes. Hard to imagine what you've been through. My (soon to be 90)Mother had undergone Non-Hodgkin's Lymphoma surgery/treatment when she's 75 (1998). She was very frantic when my breast cancer was diagnosed just five years after her cancer experience. Then I had the recurrence. And more surgery/treatment ... So I know how you are feeling.

Mother lives five thousand miles away, but my Oldest Brother (1990), 2nd Sister (2007) and one of my nieces (2010) all had come to take care of me after my surgeries. Mom's hard of hearing, so most of the messages were relayed by my sisters and brothers. Whenever I talked to her on the phone, I'd have to just listen because she couldn't hear well and she would repeat the same story again and again ... She did send me a long letter each time and my siblings and her always put together a big check to help out with the expenses. (Due to my brain injuries, everytime I had a surgery, I'd lose my job ... :)

Please keep us updated and let her know we are all praying for her.

Re: Haven't been on this board for nearly 3 years
 

Jackie thank you very much for the link to Imerman Angels. I was looking for just such a group when K was first diagnosed. She is not a group joiner herself, but I've passed this on to her, as she might be interested in a one-on-one. I'll mention it to her oncologist when we meet next Thursday as well.

We are all in shock, but we will get through this together. It is so incredibly good to have you girls behind us. Sorry if I am totally self-absorbed at the moment; I know you are all going through your trials, and my heart goes out to you. When I wake up from this fog, I'll be reaching out more.

XOXOX

Re: Haven't been on this board for nearly 3 years
 

I am so sorry to see this today. I have not been on this site for several years. Something made me try to get on this site today.....maybe it was because you were posting a very sad message. My heart breaks for you as I too have a very independent daughter who is very much like your daughter. I will keep her in my prayers and I hope that there are new drugs out there that will help her. I am a 9 1/2 year survivor of stage IIIB Inflammatory BC. I had a very poor chance of surviving and I am still here and ned. You have a lot of people here on this site who will be here for you. Mary L

Re: Haven't been on this board for nearly 3 years
 

I'm very sorry you got the bad news. She wasn't in shock, her doctors were right. We do have a few people here who have lived a long time with liver mets but those are rarities. The median survival rate is 3 years.

I've had it in my liver for 2 now, and am declining. I am hoping that TDM1 is the wonder drug for me it has been for others so I am still hopeful, but I am realistic too.

If Kiri wants to talk to people with Stage IV cancer, have her contact me. I have a private group that is only for people with Stage IV. That way, we can share our fears, our worries, our annoyances, etc, without anybody else seeing it.

She's in a whole different ballgame from where she was before.

My heart goes out to you. I would not want to hear these news about my child, that is for damn sure.

Re: Haven't been on this board for nearly 3 years
 

Since you asked "what do you think about this" and I see nobody with mets except me has responded yet, I will add: I am sick and tired of the pep talks I get constantly from everybody around me. They are not in my shoes, don't know what I deal with, cannot possibly fathom what I am going through. No pep talks! She is allowed to understand reality and feel bad from it. She will soon begin mourning her life and that is hard. Her career dreams, her dreams for children...all gone. She will be very sad about that - it is very hard when your future is taken away.

Don't deny her reality, which is that she is going to die of cancer, and sooner than later. Ten years would be a long time considering she has it in her bones, lungs and liver. When you say to your daughter "don't plan to die" you are essentially telling her that you don't want her to face the truth.

Because of course she has to plan to die. She will have to do paperwork, wills, legal things. She may want to plan her funeral or arrange it ahead of time. There is a lot of mental preparation that comes with this diagnosis too.

You can simultaneously live with hope that you have more time but knowing that there is no cure.

Far too many people want to tell you (me) it'll all be okay, and that is for THEM, not for you (me). Sure, it'll be okay. After I'm gone, the sun will shine, the squirrels will play, my dog will slobber on bones, my sons will get married......life goes on. But it will go on without me. We mourn that and we should.

Kiri sounds like a straight-forward, practical girl. She is facing reality. If you want to be in her life, you are going to have to face reality with her. So go to the appointment and hear what the doctor has to say. Really listen. I think, being a mother myself, it'll be the hardest thing you ever have to do. Just be very careful about pushing away reality because she doesn't sound like the type that will feel supported by that. She, like me, may feel supported when people acknowledge the gravity of what we are facing.

And, try to live each day you are given with her. It can be a beautiful time if you let it. She probably won't start feeling really bad from all these chemos for a while so now is the time to take trips, etc. Everybody is different but 2 years post my mets diagnosis I can't do much and I sleep most of the time - I wish I'd gone on a family trip when I first heard.

Again, I'm so sorry you got this terrible news. Be strong.

Re: Haven't been on this board for nearly 3 years
 

This is really awful news and what cool breeze says is right however I feel the need to tell you about my friend who was diagnosed with lung recurrence at 30 - she was told she likely had 4 months to live - she is now 35 and has been NED for over 2 years. She has had two very significant recurrences - she is her2 pos, she has had lung surgery, laser and 2 types of chemo. She now does ocean swims, runs, cycles and is truly amazing. Her mets were so big they obstructed her airways - on both occasions. Some people defy the odds and we need to be as aware of those stories as we are the median.
I was diagnosed with lung mets when I was 38 - I've progressed on numerous treatments. I do all I can to be an active participant in my wellbeing from how I eat, researching treatment options, how I think, how my mental health is - I haven't given up. There are new and significant treatments for her2 disease more than other types of breast cancer - true none are 'the cure' for most of us yet but we can still lead fulfilling lives. I choose to live in hope that maybe something will work extremely well for me but in the meantime take each day as it comes and enjoy it for what it is. I have recently ocean swum myself despite my mets. Honestly struggling a little at the moment with respiratory infection and low platelets but people who don't know have no idea about my 'poor health' from meeting me.
I choose to still believe that there is hope for so many of us.

Re: Haven't been on this board for nearly 3 years
 

I am also very sad about this news and I remember u posting the letter she wrote when she was done with her treatment and what an aspiring young lady she is. I do have a few questions tho. What were her follow ups? Since she says she has mets in several areas, did they do any scans, tumor markers, anything and if so where they all negative and then all at once mets? This is horrible news. I am not a parent so I cannot imagine how you feel, I know u probably just want to fix it, to pick her up and dust her off and send her back outside to play. If it was just that easy. My heart goes out to you and your family, u will be in my prayers and K will get some extra special prayers. I wish I knew what to say but I am still in shock and just heartbroken.