Update, both lungs are involved ugh!

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 said:

Thanks Suzanne:)

Thanks Suzanne:)

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

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

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 said:

Thanks Doris:)  I think what

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

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 said:

No one should EVER have to go

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

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

RozHopkins said:

Carol, Kay and Patti

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.

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