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Metastasis to the liver and lining of the lung

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dear Sisters:

My PET scan came back with a 2.5 cm tumor in the liver and small fluid in an area in the lining of the lungs. I start with many Doctors appts again and they want me to do some type of radiological procedure that sounds like Linda's. I haven't talked to those specialists yet. After that I will wait two weeks and most likely start topotecan chemo every two weeks. I didn't ask how long. My abdomen is clean where I had hipec but the liver met is caused by cancer traveling in the blood. She says the fluid in the lung lining is most likely caused by travel by the peritoneal fluid.

I just found out and am still shell shocked. I think my cancer is like Linda's, more aggressive than most. But dealing with this cancer has become a way of life for us. We have the wedding June 17. So much to do. My husband is so busy at work and is trying to work hard as they have laid off so many people. I need an army to help me; most of my friends still work. Family is far away. I solved these problems before and will solve them again. One day at a time. I need to stop being so hesitant about asking others for help.

I did enjoy getting the flowers in. I loved smelling the rich soil and getting grass stains on my knees. I had to get new clothes because of weight gain with the steroids. My mother of the bride dress is beautiful. I am trying to focus on the good things in my life. Cancer puts such a stress on family members. My mother had to go into an assisted living facility and I wonder if I will see her again. She is happy there though. I asked the Doctor if I had about a year to live and she said she believed I certainly had much more than even two years. She calls this a bump in the road. It looks like a pretty rugged mountain when I look up.

I will keep you updated as I find out the new battle plan as Linda calls it. Mary Ann, I am still going kayaking with you. My pace will be a little slower!

Thank you dear friends and sisters for listening. I am mopping up the tears and getting ready to get strong again. Another battle to fight! I will update you when I find out something.
Friends forever,
Diane

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

for you, Linda. You have been through so much, and yet I'll bet you will still put on your pretty outfit and tell your doctors and chemo nurses that you are "reporting for duty." I hope you will focus on the wedding, working on your garden, and remembering that your doctor calls this a bump in the road. Yes, ask others for help. I'll bet that you are always the first one to lend a hand to friends in need.

In my opinion, you don't have to get ready to get strong again. You've been incredibly strong all along. I admire you so much and will always be here for you to lend a virtual hand.

Yes, we are all friends forever.

Much love,

Jill

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I am so glad that you have the lovely distraction of the wedding to keep you from dwelling on this new challenge. & that's all it is, another challenge you will batlle through. Chemo will dry up that fluid and radiofrequency ablation will blast away that liver tumor, and you'll be NED once again. It sucks to fight on and on and on; I know. But it's do-able.

Please ask for a referral to an Interventional Radiologist to review all your options for liver mets, as there are quite a few, some CURATIVE if the spot is in the right place for resection! Maybe you can get that scheduled for right AFTER the wedding; I'm pretty sure it's in-and-out & minimally invasive. ((((Diane)))).

I continue to work out in my garden every day doing something, and know that playing in the dirt and burying my nose in flower blooms each day keeps me in balance. I fall asleep happily planning the next day's garden chores, and can see you doing that with the wedding.

I am in limbo waiting to see what my insurance says about the radioembolism. I am taking tamoxifen/megace, which is probablt just a placebo for my ER-, PR- cancer, but gives me the feeling of doing something while I wait this out. If radioembolism doesn't happen for me, topotekan will be my next chemo, although if the 1st infusion causes me ANY problems I won't keep taking it. I want to have a nice spring & summer, but I do want my best shot of this not being my LAST spring & summer. I know that you feel the same. This ISN'T your last Spring, Diane. Okay, sweetie?? (((Diane))).

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Obviously, I have Linda on my mind, too; but DIANE, this note was meant just for YOU. I hope you will forgive me; I was thinking so hard about you when I wrote.

Love, love, love,

Jill

Kaleena's picture
Kaleena
Posts: 1020
Joined: Nov 2009

Diane:

Sending you a hug. Also, if your doctor says this is just a "bump" in the road I think that is good. Anyway, you are getting good at climbing mountains! I look forward to hearing all about the wedding and your kayaking with Mary Ann.

Diane, you are so strong and a great inspiration to many. Sometimes it is hard to share how you feel with family and friends. I am glad you can come to this site.

Thinking of you.

Kathy

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

May it be a small bump and a temporary bump in the road. You have been through so much and have been so strong through it all. I am glad you have the happiness of a wedding to focus on. I hope others will help you with what needs to be done. I know it is hard to ask for help, but many are probably waiting for the invitation to help you.

I hope you get a "battle plan" soon, so you can continue to be the warrior we know you are.
Wish I were there to help you mop up tge tears and give you a BIG HUG. In peace and caring.

faith316
Posts: 25
Joined: Mar 2010

Diane

I am so sorry to hear your recent news. I read the boards but do not often post.

I do not share the same diagnosis as most of you but have Uterine Sarcoma (Leiomyosarcoma)instead. Currently I am in the same position as Linda, waiting to see if the insurance company will approve radioembolism for liver mets. Unfortunately, I am not a candidate for RFA (Radiofrequency Ablation) because my tumor is 5.5x7.7 cm. The upper limit for ablation is 5.0 cm. There are a multitude of options available to treat liver mets. Please spend time researching and consulting with an Interventionist Radiologist to see which of those may be best for you. I am confident you will be offered more than one option.

It is so difficult and painful to hear we have another battle in front of us. My prayer is that each of us find a determined yet peaceful place to dwell each and every day.

Pam

hopeful girl 1
Posts: 454
Joined: May 2010

It is encouraging that your doctor calls this a bump in the road.
It all sounds overwhelming I am sure, but we were all overwhelmed at the first protocol as well, and we got thru that.

Please know that each of us is there with you, in spirit, holding your hand at every appointment.

Peace and healing thoughts are coming your way.

Cindy

sleem
Posts: 92
Joined: Feb 2010

Diane,
Words are so hard to say at this time. Get that battle plan and know as sisters we are thinking of you. Think of June, then July, and so on until the months provide you & your doctors to work on this. Many prayers & hugs to you. Soon, I will not have the web for several weeks So, I will be thinking of all of us and when I come back here I hope each of you have the tests you desired aproved and on your way in this battle and many more summers & spring.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

So NOT the news you wanted to hear. But your Doctor's comment about 'more than two years' means this is so manageable. We just have to get into to the 'chronic disease' mindset. This indeed is just another bump in the road - or as I always say, "just one more ridge to get over" (From a climbing trip I took years ago when I had my jaws wired together from a surgical procedure. Our climbing instructor noting the fatigue level of the group, and me dead last, as we hiked up with all our equipment on our backs to get to base camp about 7 miles up to prepare for next day's mtn climb and we were all relative newbies at this! Whatever was I thinking, lol. He must have announced the 'one more ridge' a dozen times to keep us going.)

Diane, I have always felt a particular closeness to you - I also had breast cancer, treated with tamoxifen, and then have to deal with UPSC. With such a focused recurrence, targeted treatment may be just the route to go. You undertook the hipec treatment like a real warrior - and this will be just another battle in the ongoing war. And there will be a time-out to enjoy that wonderful June wedding. And you will be a most beautiful mother-of-the-bride. Are your daughter and the groom-to-be assisting with all the planning? And their selected members of the wedding party? Sharing the load with them will make the experience so much richer - 'let' them help.

We are always here for you Diane. {{{Cyber hugs coming your way}}}
Annie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Thank you for your love and support. I'm getting over the shock now and into action mode. I know I will have some type of interventional radiological procedure. After that two weeks of chemo. My decision is between topotecan and carbo/tax. I have neuropathy so she worries about giving me carbo tax. Is there a life time of carbo that you can take? I've also decided if I go the old route to ask for taxetere as I do better with it and it has less neuropathy. The basic problem is I have a tough time with chemo; my liver is cystic and I am a slow metabolizer. I also get a reaction from taxol.

The waiting is hard for appts. I go to DC this weekend for her first wedding shower. I can't cry! And then there's mothers day. I will be so happy to have my family together.

You are the damn best people I have ever met. Thank you for listening to the tears, knowing just how to listen to find my core of strength.

Oh Annie, I always feel a special bond with you two. We beat the breast and then got this horrible cancer from treatment. I was such a good girl taking my tamoxifen every day.

But I feel a special closeness to all who answer and give me a slap in the back and push me forward.

Love and friendship, Diane

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

That was a SHOCK. Love that your doc is so positive. One thing I've learned through all this is how hard they work at keeping people going. Most of us are suppose to be gone by now - and here we are going strong - working in gardens and getting ready for weddings. Unbelievable!
Thinking of you, Mia

susafina
Posts: 134
Joined: May 2010

Hi Diane,
I like your doc's bump in the road response. But now you have to concentrate on the upcoming wedding. I am sure it is very hectic and exciting. Just know that we all will be there in spirit. I hope you have a terrific time. I hope you enjoy the fun of the wedding shower. You need to give yourself a break. But you must show us a picture of the happy bride and her special Mom. Keep going. Diane you are so strong you know that you will win this battle. Remember we are all warriors together!! All of our positive vibes are being sent your way. Right about now you should be feeling warm all over because all of our positive energy .is heading your way. And I am not talking about a hot flash. Anyway , have fun in Washington!
I would like to wish you and all of my fellow warriors a very Happy MOther's Day!!
SUE

Double Whammy's picture
Double Whammy
Posts: 2268
Joined: Jun 2010

This makes me so angry. I think the more I know about these cancers, the more angry I become. It seems like only yesterday when you were going through treatments for recurrence. These boards are certainly an education beyond our own disease into how it effects other women. I think we actually realize this and are affected by it more than our oncologists (ok, maybe not).

Your oncologist seems quite positive about this new "bump in the road", and I hope you are, too. I hope you enjoy your daughter's wedding with enthusiasm and vigor. Here come my hugs, prayers, and positive thoughts.

Suzanne

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending thoughts and prayers...hang in....

Laurie

kathybd
Posts: 126
Joined: Jul 2009

Dear Diane

I am so very sorry to hear this news. Just checking in on my cohorts from the board. But bumps in the road are just that. You have been and still are a very strong lady. Reading your posts in the past have proven that to me. I send you strength, hugs and hope, which you already have plenty of, so think of this as an extra boost. I feel we come out able to handle anything life gives us with cancer.

Haven't been on here in some time. My husband who had Stage 4 colon cancer passed away in Jan of this year. Lived 3 years after his diagnosis. Really miss him, but he fought hard and lived his life on his terms.

My endometrial cancer is still gone. Last tests ahve been normal. Almost 2 years out. I thank God everyday for giving me the strength to cope with all of this. One day, one hour, one step at a time.

Blessings to you!
Kathy

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Kathy, I was so sorry to hear about your husband's death. I am sure this has been an incredibly difficult time for you...dealing with his grave illness and your own diagnosis. My heart goes out to you! I have been wondering what was happening in your world.I am so glad that you have reconnected with your support system here. We are always here for you and will hold you close!

I am thrilled to hear that you are NED ...that is such great news! You are a very strong lady and I know you cherish the wonderful memories that you shared with your husband.... May you have peace!

Karen

kathybd
Posts: 126
Joined: Jul 2009

Thanks so much for your kind words, Karen. I remember you and how sweet you have always been. Tough times, but somehow I survived it and continue to move forward.

Hope you are well and continuing on this difficult road we call life.

Blessings to you!
Kathy

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending condolences over your loss of your husband....

This must be such a hard time for you...

Keep in touch..

Laurie

RoseyR
Posts: 462
Joined: Feb 2011

Diane,

So sorry to hear about new symptoms in your liver and lining of lungs, but as several point out, small tumors in the liver can now be treated in many ways and although I used to assume that any malignanant cells migrating to the lungs were a near death sentence, I know several people who have been living with metastic lung cancer for four or more years.

I often wonder if those of us who expeience these recurrences should consider seeing oncologists who think "outside the box," such as the ten or so doctors interviewed by Suzanne Somers, after her own bout of breast cancer, in her best selling book Knockout. (Having written her off as a stereoypical Hollywood "bimbo," I hadn't initally any interest in her book, but guess what? Having read it a week ago, I find it stunningly intelligent, offering new grounds for hope through treatment outside the usual paradigms. For example, there is Dr. Gonzalez, in Manhattan, whose enzyme therapy has had remarkable success with even some pancreatic cancer patients; there is another who tests your tumor in a test tube for responses to various chemo regimens to see which is most effective for your tumor so you don't have to endure all the treatments that may be ineffectual. There are others, all well credentialed, whose patients Somers interviewed, who are having some success using treatments that transcend mere chemo and radiation.

I bring these points to attention NOT because I am skeptical of traditional cancer treatment (which I myself am pursuing) but because I wonder how many of us have read Somers' bestseller and how intriguing we find the approaches of alternative oncologists.

Whatever the case, Diane, I would pay attention to diet (via Screiber's great book Anti-Cancer) and trust that you can get by this recurrence.

Hugs,
Rosey

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Diane, no words can convey my heartfelt feelings for your reoccurance. Just know that you are in my prayers for remission. ((((HUG))) So many of us have posted our cancer fight journey with warm tears streaming down our cheeks..with blurred vision we type the few words seeking affirmation and information from others who know and care. Peace and grace to you....Lori

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

They are going to do radiation or surgery. I saw radiation oncology today but I have to see the specialized radiation oncologists this week. Regular radiation oncology said surgery is the gold standard. She wants to start topetocan two weeks after radiation. They plan to put a port in for pain soon. It's all happening so fast when when I should be planning wedding stuff. We have most of the big planning done; I have a dress and my daughter's dress is done. The bridesmaids will be here a few days before the rehearsal dinner. My friends from nursing school are flying out the 14 of June telling me they do anything and everything: cooking, scrubbing, dusting, errands....friendship is the gold of life.

I don't have cancer in the lung, they are not even sure anything is there. Perhaps a slight fluid. My daughter wants to be in "take care of your mother mode," but she needs to be in bride mode and enjoy it. My other daughter comes in tomorrow to help me for a while. She makes me drink she makes me drink so much water, checks on my meds, I suddenly feel role reversal.

Thank you friends for your posts and words of wisdom.

Love, Diane

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

You have a great support system! With so many things to take care of, enjoy some role reversal. That is great news about lung issue. This gets you down to only the liver met. Surgery and radiation are both known to manage this quite well. Will you be able to get things underway quickly pre-wedding? Is the topetocan the plan whether you do surgery or do radiation? or is there a possibility of both?

If friendship is gold then it sounds like you are very rich indeed. And it takes a good friend to be returned in kind so this speaks so very highly of you, Diane.

You're in my thoughts for a smooth ride over this bump.
Annie

Sunny777
Posts: 7
Joined: Jan 2011

Hi Diane,
It's great the cancer isn't in you lung. Hang in there and enjoy the wedding. I'll keep you in my prayers, and this bump will be just a little bump.

Take Care
Sunny

Double Whammy's picture
Double Whammy
Posts: 2268
Joined: Jun 2010

I'm so happy there is no cancer in your lungs and that a treatment plan is maybe not complete, but in the works. A bump in the road indeed!

I don't know if the new chemo will cause hair loss or not, but with radiation first, if it does, you'll probably still have your hair for the wedding (pictures!). Silly things that cross my mind.

Your friends are so much more than a silver lining. Let them take over when they arrive and you sit back and enjoy. You've done all the ground work. Stupid cancer doesn't bother to take your other commitments into consideration, and it sounds like you have a fabulous group of friends and family.

Take good care of you so you can be in the very best shape possible to enjoy the wedding.

Best,
Suzanne

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Thank you for all your positive comments and care. Expressing anger is part of healing and I appreciate that honesty. I just have appts yet and no plan. Chemo will start two weeks after radiation if I go that route. I will be on chemo for the wedding. May or may not have hair. Giggle....I thought of that too. But the wig is on hold in the closet.

We are all bumping along aren't we? Even in remission we bump along. Bumping with friends going the same route is the best healing medicine I've found.
Love, Diane

california_artist
Posts: 850
Joined: Jan 2009

Diane,

Your picture always brings joy to my heart. If there is anything I can do after the bustle of the wedding, like research something you may have heard of but aren't familiar with, just let me know and I'll do anything I can that might be of help.

Hold hands with people you love, even if it's not a situation where you would normally be holding hands. That simple act makes you feel you are stronger in any trial you find yourself in.

You know, I love you and your strength. It's the best I have to offer.

Claudia

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

Glad you have friends coming to help you before the wedding. My hope is that you are feeling well enough to enjoy them and the wedding. I know you will be a beautiful mother of the bride. Your smile will speak volumes. You are a very strong person. In peace and caring.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I saw the specialist radiologist and he was going to do cyberknife for the tumor in the liver. They had tumor board meet and they decided that giving chemo first would be best as they worry about the fluid in the lining of my lungs. They could do cyberknife later. My head spins with the changes in the plan.

I also have one other big plan/problem. My Gyn Onc went solo because of politics in health care. She only does chemo on Mondays where I live now. I could drive to Williamsburg two days a week. I could not get chemo on Thursday and Friday when she is in surgery. The tumor board wants me to get a medical oncologist to give chemo. I did that before with breast and someone is always on call and they are a large group to help you. I don't think my gyn onc has a good relationship with the chemo group as they are the group that let her and her husband go. I don't know the details and don't want to. I know there is competition when the gyn onc gives the chemo. I know she is over stressed; but she has always made good decisions for me. She is young and beautiful but also very dedicated and smart. She gives me hope. But if I have a complication from chemo she is not able to be there because of surgery demands. They have me set up with a different medical oncologist on Monday to get me on chemo quickly.

All of this gives me anxiety. Just writing it out helps me to identify my worries. Thanks for listening Diane

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I saw the specialist radiologist and he was going to do cyberknife for the tumor in the liver. They had tumor board meet and they decided that giving chemo first would be best as they worry about the fluid in the lining of my lungs. They could do cyberknife later. My head spins with the changes in the plan.

I also have one other big plan/problem. My Gyn Onc went solo because of politics in health care. She only does chemo on Mondays where I live now. I could drive to Williamsburg two days a week. I could not get chemo on Thursday and Friday when she is in surgery. The tumor board wants me to get a medical oncologist to give chemo. I did that before with breast and someone is always on call and they are a large group to help you. I don't think my gyn onc has a good relationship with the chemo group as they are the group that let her and her husband go. I don't know the details and don't want to. I know there is competition when the gyn onc gives the chemo. I know she is over stressed; but she has always made good decisions for me. She is young and beautiful but also very dedicated and smart. She gives me hope. But if I have a complication from chemo she is not able to be there because of surgery demands. They have me set up with a different medical oncologist on Monday to get me on chemo quickly.

All of this gives me anxiety. Just writing it out helps me to identify my worries. Thanks for listening Diane

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Cyberholding your hand!!! here is hoping for the stress and anxiety to go away. Norma

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

But I certainly understand your anxiety. When you think you have a plan in place and then it changes.......that does cause anxiety. It is hard when you have confidence in your doctor and then you need to change to another doctor. Sending you cyber hugs and holding your hand as you go Monday to the medical onocologist. In peace and caring.

HellieC
Posts: 428
Joined: Nov 2010

Just wanted you to know that you're in my thoughts and prayers today (Monday) as you put your plan together.
Helen

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

((((Diane))))). I think of you all the time as I get closer to my radioembolism. I will be happy to know, one way or the other, after my mapping procedure on Thursday, whether I can really do this or not. So I surely do understand your anxiety at not having a solid plan. The only thing to do is let it go. Throw it up to the winds and let fate and God land it where they land it. Keep us posted, kiddo. Know I'm thinking of you and rooting for you.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Diane, I am sorry that your gyn/onc is splitting from the medical group. Sounds like you talked with her about her back up or coverage plans? I wonder if she could work somehthing out with an oncologist from the previous medical group. I hate the politics of healthcare....Glad to hear that you have such wonderful friends who will go into action to help you prior to the wedding. My prayers are with you....(((HUG)))
Lori

denyingarea
Posts: 11
Joined: Oct 2010

...mean that chemo could be finished potentially before the wedding? (fingers crossed!)

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I was away for a few weeks and just read your post - darn it!!!

I like your plan though - I was wondering about the cyberknife and think it's encouraging that they will do this!!!!! The technology is amazing. What do you mean about getting a port for pain? Is that the regular mediport that I have??? Will they use it for pain meds? I'm interested in learning about this.

It sounds like you are in good hands. Enjoy your daughter's wedding and all the planning that goes with it. I'm sure you will have an awesome time and will be the MOST bee-uuu-ti-ful mother of the bride!!

Prayers and hugs on the way to you, dear one. Lots of love, Mary Ann

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Was away doing some 'Bucket 'list' tripping and have been catching up on the List.

OMG, what an emotional roller coaster you've been on! My heart goes out to you! I,m not sure where your Williamsburg is located but just read that a new Onco interventional(?)Radiologist is at Cornell/New York/Sloan I think. His name is Madoff ( not a popular NY name) and the article about him was in the NYTimes.

I am wondering if you solved your Mother of the Bride hat questions. I noticed that Princess Beatrix's hat is on the block for a mere $30,000 ((((hugs and smiles)))).

Sara

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