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Update, both lungs are involved ugh!

Patti1967
Posts: 186
Joined: Mar 2013

Well I saw my VATS surgeon today, and it seems my med onc nurse didn't give me all the info last week on my PET scan.  So I find out today that I have several noduels on both lungs not just  two on the left.  The biggest one is on the left lung, he said they all look the same, I asked what he meant and he said  all the same cancer.  I also have some "activity" in the hilar lymph nodes bilaterally, right more then left.  And of course the SCC on my lip lite up due to not having clear margins after my surgery. 

So he tells he wants to remove the biggest tumor however, my lungs are in such bad shape that I have to have a series of tests to see how strong they are and if I can tolerate the surgery.  He flat out told me today that he will not operate unless he feels certian my lungs can handle it.  So I have those tests next Thursday, then I will see him again and we will go over the results and see if the VATS will happen or not. 

I just can't figure out how, this happened so quickly, my PET in Sept was clear.   Thanks everyone for your support, hugs and prayer, thoughts, I SOOOOOOOOOOOOOOO appreciate it!

Patti

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Your PET was clear in September and then this?  I don't understand that either Patti.  I'm so sorry for this news. 

I will continue praying for you.

Hugs, Debby

Patti1967
Posts: 186
Joined: Mar 2013

Thanks Debby and yes I had a PET/CT scan 10 days after my bilateral mastectomy this past Sept and it was clear.  Hell I just finished chemo for the bilateral IDC on Dec 10.  Yet here I am with both lungs lighting up like a christmas tree just months later.

Patti

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smalldoggroomer
Posts: 1181
Joined: May 2010

Hi Patti,

I started having trouble breathing last spring and I was going to Moffitt then. I called and called them to tell them I was having trouble breathing and it took weeks to get a App. Then My Dr, there told me it was just scar tissue in my lungs and I must have hurt my back some how and that was a bulging disk. Both was cancer. I was calling them every day telling them I could not breath. long story short they just didn't care any more. I wound up in the hospital twice. They gave me three days to a week to live and then I met my new Dr and am now in remission again! My point is no matter how bad it sounds you can still beat it. I am doing great I am stage 4 now but there is no active cancer. Hang in there Your in my prayers and thoughts.

Take care Kay

Patti1967
Posts: 186
Joined: Mar 2013

Thanks Kay, glad you are doing better:)  I will hang in there and fight:) Thank you!

Patti

survivorbc09
Posts: 4378
Joined: Jun 2009

Cancer sucks big time!  You are so sweet Patti and so supportive to everyone here.  I hope that in some way we can all help you through this.  Fight! 

Praying,

Jan

Patti1967
Posts: 186
Joined: Mar 2013

Thanks Jan, and you all do help so very much.  It is so comforting knowing I can come here and talk to those who know what I am going through.  I am so grateful to all of you!

Patti

Double Whammy's picture
Double Whammy
Posts: 2338
Joined: Jun 2010

I've been following your posts and am floored by each new thing.  I'm sending prayers that you will find a treatment plan that will knock this stuff into remission asap. 

Suzanne

Patti1967
Posts: 186
Joined: Mar 2013

Thanks Suzanne:)

camul's picture
camul
Posts: 2141
Joined: Dec 2010

When I was diagnosed with mets, it was already through all my bones and skin. I was diagnosed the beginning of Sept. But went to the ERmisAugust. Ihad all scans and tests 9 1/2 months prior and my pet scan was clear, had bloodwork and physical by onco in May and all came back clear. He sid it was growing for years but may not have been active on Nov or could have been that I had 3 surgeries, Bladder resectioned, thyroid removed, both for tumors with aytpical cells but not yet cancer, and had my apendix removed for stones,. And spent 8 days with a blockage after appendix was removed where they did ct scan, mri on abdomen as well as daily xrays, a year prior and no sign of any cancer.
I wish you all the best, the treatments are not easy but they have given me more time.

Hugs
Carol

JJDS
Posts: 259
Joined: Apr 2013

I also follow your posts and always say a prayer for you every time I read them.  I will not stop praying for you Patti.

Hugs, JJ

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Megan M
Posts: 3001
Joined: Dec 2009

Lots of cyber hugs and praying daily for you!

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

Sending more prayers!

RozHopkins
Posts: 477
Joined: Dec 2010

I don't get all these sad stories ladies.  Just how many of us have reoccurrence?  It almost appears most of us do.  I wonder how many are walking around with unknown mets and I totally think cancer numbers are wrongly portrayed.  We are just a small number here on line and the percentags appear very high.

 

Another worrying thing is how after surgeries and treatment some have no regular in depth follow ups until something appears obvious and hence harder to treat.  We can pick up lumps ourselves put not internal stuff.  Shouldn't we all be getting MRIs etc every year after or something?

 

My thoughts go out to you three ladies.  Sorry this has reared its ugly head again for you all.  You give me strength and keep me on my toes.  Seems we can never become complacent.  

 

Oh dear it is a little depressing.  I don't think I could go through treatment again even though I didn't have any problems The first time.  

 

You all keep strong, you are all amazing.

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

The medical establishment will never go for a yearly MRI without cause.  I know from my own recurrences, I always knew before I read any test report.  I watch for signs.  I knew with the dry cough a year before the ct scan stated widespread mets to the lungs and pleura.   I knew with the pain in chest area that I was having a year before the bone scan that picked up two ribs (Oncologist gave me Prozac), I kept asking everytime I had a bout of cellulitis (I had 3 of them) if it could not be somehow related to a recurrence.  Seven doctors including my oncologist said NO. 

I don't believe in testing for testing sakes without a reason.  I should have been more pro active but in case of the regional recurrence, I didn't know what to ask for, I should have demanded a bone scan when the prozac didn't work and with the dry cough, I didn't want to know...  Just like my February ct scan, I wasn't surprise to read the report.  I knew when the dry cough return, along with wheezing and also shortness of breath that something was up and I wasn't going to like it.  I had a 2nd stable scan with regression in September.

One should not run to the doctor about every pain.    If the pain hasn't gone away in a couple of weeks and you can't think of anything you might have done to cause the pain, see your doctor about a test.

Breast cancer does keep the 70% of survivors hostage because it can return even after 5 years.  

Doris

 

 

 

hope67's picture
hope67
Posts: 169
Joined: Apr 2013

You seem a real fighter. Like I said, I am very sorry, I know all this must be a hard blow for you. Hugs ))))) There must soon come a day when things will change it's curve upward. Good luck with all the tests!

Carmen

Patti1967
Posts: 186
Joined: Mar 2013

Thanks all, I truly think that I was stage four already back in August when I was first diagnosed.  I think the mets to my lungs were still micro and undetectable by scans.  Of course that is just my opinion and it helps me make sense of all of thisWink.  Whatever helps us get through the day right!  My blood work always showed normal, even back when I was being told I had bilateral IDC, even after surgery when I was told one node was fully metastic and showed it had entered my blood. 

I have just come to the realization that the "whys" may or most likely may not be answered and it doesn't really matter.  What matters is fighting and beating this crap.  I always said I would never do treatment again, of course that was right after my last round in Dec but, here I am willing to do what it takes to live.  I am still hoping to be here to see my now 7mon old grandson graduate high school.  A lofty goal to be sure but I was never one not to set my sights high!:)

I know one thing, I won't give up, none of us can ever give up!

Thank you from the bottom of my heart!

Patti 

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear Patti,

I was dx in 1994, cmf, then Tamoxifen, regional recurrence in '99, two rib lesions in 2000 - Arimidex kept me NED until 2008.  A dry cough led to a ct scan where both lungs were involved, along with the pleura (lining) and a pleura effusion.  I also had a PET scan that also found celiac nodes involvement and confirmed both lungs and pleura area.  I had a VATS and in the thoracic surgeons notes stated: "I was studded with tumors in both lungs, pleura.  The effusion was drained.  Tumors showed I was stil ER+ PR and HER2 negative, I began using Faslodex at 250 mg.  The next ct scan 7 months later showed progression so I went on Femara and for the next 2 years I was stable.  In 2011, progression and I decided to try a break in order to reboot.  This new theory was approved in the 2008 SABC Symposium.  I didn't use estradiol but my own estrogen to allow the cancer to grow.  The ct scan in the 7 month showed the cancer was very active again, so I went back on Femara (rebooting in hopes to use the drug longer), my next ct scan showed more progression so I went back to Faslodex now approved by the FDA for 500 mg.  My oncologist didn't think it would work but my next scan was stable, my next 3 months ct scan showed continued stable with some regression.  About 5 months later, I had the dry cough, shortness of breath and wheezing.  I asked for a ct scan that showed that my right lung, pleura and ribs were stable but my left lung showed increase in size and numbers.  I had used all the hormonal drug therapies except one.  To soon to use that one, it would have failed had I tried it now.  Might work later down the road.  After 18 years of using hormonal drug therapies, I went back to chemo.

I always stated I would never do it as I read that women like me do better with hormonal but.... I could do nothhing or do chemo.  I am on Taxol since February.   When I say it is in both lungs, I mean they were everwhere including the lining (Pleura) that goes around the lungs and it will be 5 years next month since that awful ct scan.

I stayed overnight after the VATS and left the following day.  I was back to work 3 days later, 2 days were my days off.   They ran a series of tests on me too.  I passed them all and they are all the normal ones that are given prior to any type of surgery.  If this surgeon doesn't want to operate ask for someone in his practice that will.

I hope my story helps you.

Best to you,

Doris

Patti1967
Posts: 186
Joined: Mar 2013

Thanks Doris:)  I think what complicates matters with me is the fact that the "slight" emphysema I was told I had four years ago is now being called extensive....I am no longer a smoker and they cannot figure out why that has gotten so bad during these past 8 or 9 months as well. The scans in Sept showed just slight changes in that not enough to even warrent treatment of any kind.   This surgeon is the very top of the top at U of C center for advanced medicine in that area.  It's not only the numerous noduels, like that word better then tumors...its the fact that my lungs are in horrible shape now altogether.  I am ending up being a very strange case....

I saw my head and neck cancer surgeon today, and my rad onc next Wed to be fitted for my mask for my 36 rounds of radiation I will be having to my face )lower lip and chin).  I will be starting those treatments on May 28.  They are planning to just add the lung met treatment after they finish the VATS or whatever they end up doing. 

It does help me Doris to know how you have done:), cancer is hell on earth.

Hugs!!!!!!

Patti

Josie21
Posts: 365
Joined: Nov 2012

Hi Patti,

I can't tell you how often I think about you.  I just don't understand how it all happened so fast.  I told my husband about your diagnosis and I called it the 'the perfect storm'.  It seems like everything hit you at once.  I just have a feeling in my heart that as fast as all this showed up is as fast as the chemo is going to knock it down.  I am glad Doris has shared her experiences with you as well.  I know it is going to be hard to get through all of this, but my money is on you 100 percent!

You are in my thoughts and prayers.

Hugs,

Ginny

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

No one should EVER have to go through what you are Patti, no one.  It makes me so mad!  With that though, I know we can't change it, but, what we need to do is support and encourage you to fight, and, you need to Fight, fight and then fight some more and beat the beast to the curb!

I know we all appreciate your keeping us updated, so, please keep them coming.  We're all following your posts and we all love you!

 

Sue :)

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

You know Patti that I am adding my prayers for you.  I will light a candle at church for you this Sunday.

With many, many hugs,

Diane

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Hi,

Your plate is indeed full.  I am so sorry about the need for lower lip and chin radiation.  I hope that goes well.  Sounds like you have a great thoracic surgeon to do the VATS.

Keep us posted.

Doris

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

Saying how sorry I am doesn't even seem to touch how I am feeling about your post.  Just so sorry Patti that this has happened.

I'll be praying for your treatments to work for you.

 

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

double post

 

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

You've got so many prayers here Patti and I am adding mine to the list of pink sisters that love you and are here for you.

Hugs, Kylez

Patti1967
Posts: 186
Joined: Mar 2013

Thank you all:) All of your prayers, support and well wishes give me strength!

Patti

June Bugs
Posts: 169
Joined: May 2013

I am so sorry.  I feel so bad for you and will be praying.

VickiSam's picture
VickiSam
Posts: 8507
Joined: Aug 2009

are with you.  So many Sisters in PINK have provide such valuable information, insight and proof that life goes on.  Best of luck and well wishes.

Strength, Courage and HOPE for a Cure.

Vicki Sam

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Can't even find the words right now to tell you how sorry I am Patti.  You know you've got me and all of the others in your corner supporting you and praying for you.

I wish I could erase all of this from you, I truly do.

Please continue to update us and to come here for support.  There's a lot of love on this board for you!

Lex

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I am sending lots of hugs your direction today! 

June Bugs
Posts: 169
Joined: May 2013

Positive thoughts and prayers.

burcu123
Posts: 70
Joined: Jan 2013

Dorris Your story is so uplifting, you are real warrior

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Praying each and every moment for you!

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

I pray that God's angels wraps you in a healing blanket of love.... HUGS!!!  Kathy

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Good luck this Wednesday Patti.  I know it is going to be difficult for you.  When you can, post to let us know how it went for you.

Sue :)

Patti1967
Posts: 186
Joined: Mar 2013

Thanks:)  I have appts Wed (rad onc for lip and chin) Thurs (breathing tests to see if I can have the VATS) and Fri with my surgeon who will then let us know the results of Thurs tests and if and when my surgery will be.  Today however, I plan on enjoying the 85° it's going to be today.  I am going to take a long walk on the beach:)  HUGS to you all of you wonderful supportive pinks!!!!!

Patti

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Enjoy your walk on the beach today Patti! 

Lots of hugs,

Lex

Lynn Smith
Posts: 1265
Joined: Mar 2011

I'm praying for a Miracle that you're able to have surgery.Throughout my life praying has got me through sickness, hard times and others lives have been saved. Prayer gets me through life.I had a out of body experience after the birth of my oldest son. Those  gates were opened and HE was asking me to Come.I said I can't die.I just had a baby boy that needs me.I woke up and was alive. It wasn't my time. i've lived 45 years since that and with other serious illnesses and trauma.I Prayed.

After the situation I had I was talking to a classmate.I told her about my experience.She said it was the drugs.No it wasn't I only was taking a antibiotic.No pain meds. A miracle happened.This is what I wish for you.And you see your grandson graduate.My experience was 45 years ago.I now have seen all but 1 grandchild graduate and have a new great grandson.

Believe in Miracles.I will pray for you that it happens.My prayers are usually answered.  

Lynn Smith 

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Praying for a miracle with you too Patti! 

Love, Leeza

Patti1967
Posts: 186
Joined: Mar 2013

All prayers are welcome and so appreciated:)  I so enjoyed the weather today and the walk and smell of the beach, ahhhh it's the little things in life.  Now to get my mind set ready for the rest of my week....HUGS and more hugs to all!!!!!

Patti

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

It makes me so happy to know that you had a great day at the beach!  I know you've got a rough week ahead of you.  I and all of the other pink sisters will be here, waiting for an update.

Hugs and more hugs to you too,

Lex

Patti1967
Posts: 186
Joined: Mar 2013

Thanks Lex:)  You are just too sweet!  and a great pink sister:)

Patti

survivorbc09
Posts: 4378
Joined: Jun 2009

Good luck today with your rads onco Patti. 

Hugs, Jan

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Sending more hugs, good luck and prayers to you today Patti!

Sue :)

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Like lately, I am tardy in wishing you the best for your appointments this week.  I will watch for your updates.

Hugs, Kylez

Patti1967
Posts: 186
Joined: Mar 2013

Well they (my rad onc office) called this morning and postponed my appt.  It seems that at the tumor board meeting last night they decided I was going to need a second surgery on my lip/chin because the cancer is growing back.....I see my ENT surgeon concerning that on the 23rd.  I swear nothing has been going as planned lately.....it's getting on my very last nerve.  My lung tests and appt are still on for tomorrow and Friday.  Geez I hope to get whatever good news there is to hear Friday, really tired of all the set backs. 

Thanks all for your thoughts, it really helps me each and every day:)

Hugs,

Patti

Josie21
Posts: 365
Joined: Nov 2012

Hi Patti,

OK now, I think it's time you catch a break!!  I wish I lived closer to you so I could take you out for a few drinks and just give you a hug.  I hope you get positive news tomorrow and Friday.  I know you can do this Patti!!

Hugs, 

Ginny

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Patti, I am so very sorry..  I just can't believe this is happening to you.  I pray you do get some good news and soon!

The biggest of hugs to you,

Lex

June Bugs
Posts: 169
Joined: May 2013

I will be praying for you.

June

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Like Ginny, I wish I could give you a real live hug too!  But, it would be more than a few drinks, it'd be a LOT of drinks!

Thinking of you today,

Sue :)

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