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New Worrie wart here

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

Hello Everyone ...

I am a usual suspect on the breast cancer board. Was dx last August and have just recently been declared NED. WOOO HOOO ... However, back in December I had a Pet scan and that scan showed I had a few small nodules in both lungs (3-4cm). Once was 6mm, peripheral, and complex. The docs said to wait for the next scan to see if they grew.

A couple grew including the 6mm one. It was 7mm in May. I had a visit to the ER in June because I was having trouble breathing. Well, the ER doc suspected gallstones and possible blood clot. Not sure how he came up with those problems but I am glad that I had another scan. It showed that 2 more nodules grew, as well as two previous ones growing to the size of 8-9mm. AND he said that 2 "masses" were found in my upper right lung. I don't think I spoke for 5 minutes. I had to take it all in. This newer scan was exactly one month after the last one. I am worried that the growth is not a good thing.

Since I am a breast cancer survivor and did had radiation to the right breast, I know that the masses could be a side effect of radiation. I did see my oncologist this week (we went over my mammo which was GOOD) and she did say that she needs to know what is going in my lungs (I just fired my other oncologist...this was my first visit with her) She is concerned about the masses and that some of the nodules that have grown are outside the radiation area.

I guess I am writing here because I am looking for any information about what I might expect if this turns out to be a secondary cancer. My MO already believes it is not mets. I am taking Arimidex for estrogen fueled cancer and if this was mets, the nodules would disappear. She went over the scenario about the possibility of being Stage IV. That confuses me too. If it's not mets, then staging would be different, right? I wouldn't necessarily be stage IV without a biopsy. Anyway, she is waiting for the next ct scan (August 6) and waiting to hear what my thoracic surgeon says when he sees the report. My understanding is she wants to do VATS just to get to the bottom of this.

Is VATS a difficult surgery? What kind of problems are possible? I just feel somewhat LOST.

Thanks for any help.

Gentle hugs and prayers,

Mary

dennycee
Posts: 707
Joined: Mar 2011

Hi Mary,

Let me start by saying "oh, crap". You should not have to go through this. Actually, no one should.

I had vats surgery last October and am glad to share my experience. Most important, it is the least invasive procedure. The surgical incision is just a few inches long versus a sternum to belly button scar that you see in people that had open heart surgery. They manipulate the ribs apart to get the little camera in rather than having to break them all to open the rib cage to get a look at what they want. If the bx is + they can do a wedge resection using smaller tools, I guess the lung cancer equivalent of a lumpectomy.

My vats was done to drain fluid from my pleural cavity and the pericardial cavity. I developed a hernia at the top of my incision. We are holding off on surgical repair until this gets larger. In my opinion (humor here), IF IT GETS ANY LARGER IT WILL WANT ITS OWN CUP. I will get back here with a video of a vats surgery.

So, moving on, I think that you are right about staging. Yours may be any stage, cant tell without the bx. I read a thread over at Inspire.com about someones lc bx coming back as having an HER-1+ driven mutation. More on that tomorrow.

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

:)

Thanks for taking the time to reply to me about VATS. It is nice to know that there are folks out there who really want to help.

LC BX?? Lung Cancer B______ X_______??? I read about a test called Circulating Tumor Cell test. It's kind of like Oncotype DX (genetic coding for breast cancer). It is not new but has been making impressive strides into alienating genes that continue to grow after treatment. It sounds quite promising in being about to give doctors information about whether or not a recurrence is in the future. I guess it won't be necessary for me right now. The doc really wants to get a sample just to get this thing a name. I pray it is not cancer. I pray that my next scan will show a reduction in growth.

I will be calling my MO to ask her if I should have a scan with contrast. (this scan was ordered by my previous MO) I've not had that yet and I noticed that my reports mention this as being a bit prohibitive for them to give a direct answer as to what lurks in my lungs. All have mentioned mets. That's the scary part. I did have a PET/CT scan in December but the nodules were below the spatial capabilities of the scanner. NO SUV uptake in other organs. Some was found in my breast but I had surgery after that and came back with clean margins.

The VATS sounds ugly! NO more mid drift shirts.... :(

Your humor is great! I see you have quite a positive attitude. How are you feeling? May I ask what your diagnosis is? This whole cancer thing is wrong. With all the brilliant minds working in science today, why can't a gene be found that causes a cancer cell to wake up? Especially breast cancer. Teams have been working since the 70s (before that too, but real research started back in the 70s) and still have not been able to stop this beast in its tracks! It still kills people!

UGH!!!

I look forward to your offering of a film at 11 (my humor coming in now)

xoxo
Mary

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

Lung cancer is staged by what is called TNM staging. You can Google it. Vats is just to do a biospy more or less. Hospital stay 3 to 5 days. You will have 3-4 small cuts under the right arm and towards your back, you will also have a drain tube. It is painful at first, but doable. It was the full thorasic one that is a pain not only in the chest, back but the are as well. Had both of the the thorasic Feb of this year. Breast cancer left side 2008, secondary cancer "lung" on left side 2011. Go figure uh? Hope all goes well for you..keep us informed and i will keep you in my prays!
Blessings,
Ellen

catcon49's picture
catcon49
Posts: 389
Joined: Aug 2008

Hi, sorry we have to meet in this forum, but glad your here. If the nodules turn out to be cancer, they will determine if it is a met or a new primary cancer. If it is a new primary cancer it could still be a stage Ia cancer, which they will treat as such. Depending what the doctor orders, you may have a biopsy, or they may do VATS surgery, they will biopsy it at that time and then I believe if it is cancer they will take part(wedge resection) or remove a lobe of the lung.I had a incision directly under my breast (of course if you have had a masectomy it may not be there) an a 3-4 inch incision under my arm. If it is determined to be a met, then the staging will be accordingly. Hopefully, you won't have to deal with all this.

Good luck, and God Bless you

cathy

dennycee
Posts: 707
Joined: Mar 2011

This shows a vats surgery,it is kind of long but you can skip around. This is a resection of a cancerous lobe. VATS really isn't bad, much better a couple 2-3 inch scars than an 14 inch one.

http://www.youtube.com/watchv=VNyUl6pV--0&feature=related

BX is short for biopsy, do you folks over on breast cancer use tx for treatment? Yuck. Now you may be stuck having to learn a whole bunch of new alphabet soup terms. Circulating tumor test is new to me but I am still learning. The more I learn the more I realize I know nothing.

I was diagnosed in 10/10 with stage 4 non-small cell lung cancer(nsclc)specifically adenocarcinoma. I was given 10-15 months at that time. I do make a fabulously active corpse. And yes, humor is one of my most important tools, I am as active as I can be. I take exercise classes and walk a mile or more when weather permits.

Ellen and Cathy can tell you better about recovery, I did not have a resection. The TNM staging Ellen mentions works like this: T is the size of the tumor, N is the number of lymph nodes involved out from tumor,and, M is the number of mets. You're not going to need this info though because yours will be a infection or irritation- something non-cancerous.

My CT scans have always been with and without contrast.

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I am smiling ear to ear now. WHY? Because it's nice to know that folks like you have decided to help someone who is scared about what may lurk in her lungs. I do understand TNM staging. I had breast cancer. I guess I will have to learn the lung cancer alphabet soup. Or maybe not. Either way, I feel blessed to be among you all.

@ dennycee .... I love your humor. I am the same way. I just try not to use it when I am not sure how another person will take it.

Anyway, I will watch the video later. May I ask denny if you are a smoker? It had to have been such a friggin shock to hear Stage 4. My heart sank when I read that. Your strength flows right through to my screen. For me, I will fight like a girl when I know what it is I am up against. The hardest part of this is NOT knowing. My new MO is basically saying that surgery will happen to find out once and for all what is going on. Having cancer to start with makes this a little bit nerve racking. The quick growth within one month and new nodules and new masses are scaring the crap out of me. I am prepared for the worst, but praying for the best.

Thank you all, again, for your kind input.

Peace ...

Mary

dennycee
Posts: 707
Joined: Mar 2011

How are you? Did you have the surgery yet? Biopsy? How did things turn out. I have been thinking of you.

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I haven't been online for a bit. Thank you for your concern. I still have a CT scan to get done and then answers should be comingmy way. That scan is Monday. I am trying to just stay positive. One good thing did happen ( I think ) I had a methacholide challenge which came back that I am asthmatic. I am hoping that's the ONLY reason I cough a lot. I have pain in my chest and find myself short of breath often. Who knows .... the scan will give me answers one way or the other.

I am praying that I will hear good news only. Fingers, toes and eyes crossed.

How are you feeling? Have you had vacation this summer? My hubby and I will taking off for upstate NY in 2 weeks. Can't wait.

"Let It Be" <<<~~~ my new motto
Mary

dennycee
Posts: 707
Joined: Mar 2011

Humming Beatles "let It Be" to self. Wonderful captive audience. Good luck tomorrow with scan. Short vacation here, Indiana to see my sis for a couple. May go to Myrtle Beach. Enjoy your vacation. Keep us updated.
Denny

peterz54's picture
peterz54
Posts: 245
Joined: Feb 2012

Mary, for your more technical questions you might also try posting at GRACE which has as a staff of about 20 physicians, mostly specialized onccologist. They have specialists in breast and lung cancer and are very responsive to patient questions. All free.

Global Resource for Advancing Cancer Education

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I did drop in and take a look at this site. It's truly a wonderful site.

Again, thank you.

Mary

cabbott
Posts: 1048
Joined: Aug 2006

I too started with a diagnosis of BC back in 2002. It was an adenocarcinoma, stage 1, in more than one place in my right breast, that led to plenty of surgery stuff but no radiation or chemo. It hadn't spread to my nodes and wasn't the sort to do mets. In 2006 I couldn't get rid of a nasty cough which I was sure was pneumonia. After several tries to clear it up with medicine, the doctor insisted on an xray and there was a spot. They did the CAT scan followed by a wait and another scan. Finally they decided on a biopsy using a VATS. It was an adenocarcinoma so they assumed BC stage 4 (a met) and backed out. Further genetic testing indicated that it was LC not BC, so I was in for more surgery to remove the right middle lobe. This time I got a modified VATS.

Conventional surgery can be used just as successfully as VATS procedures to remove cancer and do biopsies. But I can tell you from experience that the bigger the cut, the longer the recovery time. I was actually up and slowly jogging around the school track after the first VATS procedure. All incisions could fit under a bandaid. The second VATS procedure had to be modified because of scar tissue that would interfere with the tubes and stuff. I got a 4 incher that time. It took more like weeks this time for me to become pain free and well enough to go back to exercising. Regular surgery can take 1 to 2 years on the average and includes a very long (9-12 inches) incision, so it is worth it to find a surgeon that can do VATS procedures if at all possible. Good luck!

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I have to see my thoracic surgeon on the 17th. However, I had an appointment with my pulmonary doctor yesterday and he wanted to see the scan and the report. I am now diagnosed with asthma and had a big surprise when he told me I have pneumonia! It's surprising because I just finished (2 weeks ago) a regimen of levaquin and prednisone. He put me on yet another antibiotic and wants an xray in 4 weeks. I said at this point, "so it's not cancer, right?" His face basically said it all. He didn't have to say "we still don't know". I know that the first line of attack is antibiotics. But I've already done that route. Then the xray and then another scan. (he says a scan will be ordered IF needed in 8 weeks)

I am dizzy with fear. I have been so upbeat.....so positive. I did get the report and noticed that most of the nodules remain stable. The masses that were discovered in June have not decreased in size but "there is improvement in the extent of the subpleural multifocal areas". There is a new focal right lower lobe opacity seen and I don't want to know what that means.

Keeping my fingers crossed.

*Lit It Be* (I keep repeating this)

Mary

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