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at least 20 lung mets in both lungs

dj2158
Posts: 6
Joined: May 2009

So scared. I just read my CT/PET scan and am terrified. i have had three lung wedge resections with only one or two removed by vats surgery. My last episode has been going on since last year when I had 3 1/2 ribs removed on my right side due to tumor seeding from prior surgery. With this last surgery (4/24/12), the surgeon did another lung resection but there was stuff left behind. Could not get it all. My specialist said 10-15 spots on 8/1/12. I am now with a new cc specialist and have just had a CT/PET scan and I just read the report. I cannot believe this. My specialist is in Rochester and my hometown oncologist still has not started chemo. I cannot get a hold of her ever and the nurses give me information one time which is ok and then i get a call from someone else and they either don't get the right info or are giving me incorrect info. I just can't believe this!!

Has anyone else had this happen to them with this many lung mets? Could you please tell me your stories and advise me what to do?

Donna

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Hello Donna,

I am sure that there are members of the board who will respond to your inquiry. My husband has had lung mets in both lungs since 2009 that have been held at bay with his various chemo treatments. Lung mets can be numerous and, if small, will generally not compromise breathing as the lung volume is quite large.

I am a little confused ... as I understand you had surgery this past April 2012 and the surgeon reported that he could not remove all the cancer ... you then said you had a testing four months after that surgery in August 2012 that showed 10-15 spots ... now you have a new doctor who has ordered another imaging test that again confirmed the presence of the lung tumors...

Were you advised to have chemotherapy treatments after the surgery in April 2012 by any of these doctors or have you been without treatment the past four months?

Are you presently, or have you in the past, been seen by an oncologist at a National Cancer Institute? You mentioned Rochester, New York ... there are six NCI hospitals in New York State that you can reference at this site:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

I mention the NCI centers because it seems that you may need to seek the help of a major cancer center and not rely on your hometown oncologist if you are not feeling comfortable with the level of care they are providing for you. Not returning calls, being given confusing information, and not providing treatment for a patient in need is not a good sign.

Do not wait. Perhaps it is time to use your energy to advocate for yourself in a different direction that will lead to more positive results. When you are ill you need support, clarity, and someone you can depend on. A reputable oncologist at an NCI center may be your best source.

I wish you the best and I hope that others will respond with their suggestions to you. Maybe there is someone in the New York area that will recommend an oncologist to you.

Sincerely,

Cynthia

dj2158
Posts: 6
Joined: May 2009

I was seeing an oncologist at Dana Farber who is a cc specialist and researcher and wanted me to stop treatment in April, do nothing. So I went to two other cc specialists who were recommended to me, one in rochester at strong and one at roswell in buffalo.

My new cc specialist is at strong in rochester. She just did her own baseline CT/PET and this is what was found per the report. She called me last night. I have been followed all along by a specialist at DF and a thoracic surgeon at Brigham and Women's in Boston. I did not realize and no one told me that there were this many mets until the August 1st when they did another scan and that was an estimate and supposedly total. That is when I went hunting for a new specialist. I will have all my scans there and she will call the shots on what treatments i will have. The chemo will be administered here where I live. Once I start chemo, which is in two weeks, I am changing my doctor here.

The mets are very small. What treatments has your husband had and how does he feel? I am just very scared right now. Thank you for your response Cynthia. Any other information you think would be helpful will be appreciated.

Donna

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

The first time, I only had a couple of small ones in the pleura of my right lung...that one cost me two wedge resections.

A couple of months later, a new spot emerged that was solitary and six-inches from the last location. I procrastinated, because I did not want to leave work after just getting back...

That cost me, the tumor doubled in size every couple of months and by the time I hit the O/R, the surgeon changed the whole plan on a dime...tumor had grown to the size of a tangerine...about 6cm, I believe it was.

Cancer was embedded in my chest cavity and up into my rib cage and had begun to shut off breathing, making it painful and such. During surgery, they removed two of my ribs as well...they biopsied negative (fortunately) but cancer was present in my chest cavity, as they cut and scraped and got as much as they could.

They had to stop because it was dangerously close to my spine and my surgeon did not want to risk paralysis. But, they took out 5-more wedge resections.

So, 30tx of IMRT radiation with six-weeks of 24-7 5fu pump...and then after that, six-months of Folfiri. The radiation destroyed another 10% of lung tissue. My breathing is compromised now and I get short of breath when exerting, sometimes even walking.

I have not had multiples...I knew a lady who did and initially she got rid of them with chemo Folfiri.

It sounds like they will want to do chemo to see if they can shrink or perhaps melt those out of there...with multiple mets in both lungs, surgeons are going to be reticent to do any surgery, or other surgical type of intervention...i.e. Cyberknife etc.

I would try and coordinate the care between the Rochester location and your local on...make sure they agree and their heads are nodding in unison...and make sure you understand what the plan is.

That will alleviate alot of guessing...and keep you concentrating on the fight itself.

I'm sorry, Donna...it can be a rough ride. If it helps you any at all, I just made it 8.3 years...I've been fighting steadily but in this latest remissive state for 15-months after last year's very hard fight.

Keep paddling!

-Craig

dj2158
Posts: 6
Joined: May 2009

Craig,

Thank you so much for the reply. I am trying my hardest to get this together once again. I wish I could get into remission for a long period. It just seems since 2009 something has happened every year. It started out with four spots they were watching in 2007 and now to this. This is very scary this time. The other times i have dealt with very well but this time it is another story.

The only onc I am counting on is my specialist in Rochester. I also have another specialist in Buffalo that i could go to if need be. The onc where i live never calls me, can't make a decision and her staff gives wrong information and is rude. I shouldn't have to put up with that. I just don't feel comfortable with her anymore. Once I get settled into chemo, I think i am going to change my oncologist here at home.

It sounds like you have a very aggressive oncologist with all the treatment you have had and remission for all these months. That is so good for you.

I am trying to keep my head above water but it is so hard.

Thank you again.

Donna

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

Thank you...my new oncologist for the past 3-years really put my feet to the fire and wouldn't let up on me...I only got two 1-wk extensions for the whole year...it was just surgery, radiation w/chemo, and then the hard chemo...

I know what you mean about not getting too many breaks...before this break I've been on, I was much like you...I'd wrap up something...and a couple of months later, it was somewhere else etc.

That went on the last few years quite abit...for whatever reason, I have responded favorably and am in a clear state...albeit for how long?

Like your idea about the switch with the local...you're right, you don't need that. We always vote with our feet and our car keys...I think I can already hear the motor startin':)

Good luck!

dj2158
Posts: 6
Joined: May 2009

craig,

Thank you. I will be on Xeloda and avastin right now which I pray works. Folfiri will be used, if necessary.

I am seeing a social worker for my severe anxiety this friday. I hope she can help me to get rid of this so I can live my life without fear all the time.

It scares me that no others have had this and haven't posted.

donna

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

Folfiri is very effective at shrinking tumors...you should experience some positive response from this treatment in reducing the tumor numbers.

Anxiety medication might be good for you right now to help lessen the extreme lows.

It is hard to live without fear - in reality, the fear never leaves us, even for those with long-term success...that omnipresent feeling of cancer pervades our waking and sleeping moments and never truly leaves us.

The key is finding a way to manage those fears and apprehensions, so that some life can shine through again. The combination that unlocks that lock is elusive at times - and usually depends on where we find ourselves in our fight.

When not in treatment, things are always more manageable...in treatment, it is easy to lose sight of the goal and hope can be fleeting when we're so sick that we can't see to the next hour.

This board represents only a microcosm of the cancer experience, so just because nobody has posted, doesn't mean the prognosis is all bad. We're just a snapshot of the representations that cancer offers, but not definitive by any means.

It's possible that nobody here currently has that - and someone with experience, may have already left the board and moved on. The friend I had here does not post here anymore, but she would tell you that she had 20 or so - and Folfiri did help her get rid of those.

Don't give up - it's okay to be scared, but don't shut down.

There are many things that can be done...the thing for you will be to reduce or eliminate these tumor spots, so that other methods can be used, like Cyberknife, or a VATS surgery, or something along those lines.

I would encourage you to stay with us - the stories told may yet be of benefit to you.

-Craig

There is a website called The Colon Club - perhaps, there is a case over there

dj2158
Posts: 6
Joined: May 2009

craig,

thank you so much for your encouragement. I just had a good cry with my neighbor and i feel a little better but this is so hard this time. the magnitude of that many spots on my lungs is so scary. I am seeing someone friday for my anxiety and depression.

I do belong to the colon club and may post there but I am kind of worn right now. Thank you again for being so helpful and encouraging to me.

Donna

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