BlueWolf6457

After a year of scans, tests, and other wastes of time a new Oncologist has informed us that what's been showing up in all those scans is a recurrence in the same lung. Of course, since they wasted a year testing her without giving any treatment, only a small portion of the left lung is left unaffected. The old Oncologist kept claiming she didn't know it was cancer. Wow! She is going to be starting chemo within the next two weeks. Possibly the Cisplatin again plus 2 more new chemo drugs. I need to try to talk him out of using the Cisplatin again because it was so hard on her last time that she needed Ritalin in order to "wake up" from severe chemo brain symptoms. So I will be using this section to update everyone and probably ask a ton of questions. Here we go again

1. Soft tissue mass left anteromedial chest and mediastinum extending from the parasternal area posterior laterally and involving the anterior chest wall surrounding the internal mammary chain on the left. Maximal transverse dimension is increased from 5.3 to 6.3 cm. 2. Stable 1.8 cm right upper lobe nodule with 2 very small right lower lobe nodules now seen in the 5 to 6 mm range measuring slightly larger. 3. Stable pericardial effusion. 4. Small left pleural effusion slightly increased.

New development - my sister will be starting Opdivo infusions beginning around April 28th and will be getting them once every two weeks.

whoot whoot

Her cold is over and she has stopped coughing. The last CT was taken on the first day of her cold. She has also stopped wheezing. I too dont know why they are waiting but its likely becuase their needs to be 6 months between PET scans????

Thanks for responding Tom. We will find out in April. Praying its NOT a recurrence.

Has anyone's lung cancer recurred? if so what were the symptoms? The following is the result of the CT scan from 2/1/16 IMPRESSION: 1. Spiculated mass posterior aspect right lung apex. Based on CT criteria, this appears to have slightly increased in size when compared with prior study and is worrisome for possible metastatic disease/second focus of tumor. 2. Extensive pleural and parenchymal changes in the left upper lung field consistent with the patient's history of left lung cancer. Overall, thickening involving the left lung apex has significantly increased when compared with the prior study. The previously noted mass/soft tissue density involving the anteromedial aspect of the left lung field, which appears to possibly invade the anterior mediastinum and anterior chest wall, is similar to prior studies. 3. Small pericardial effusion. The overall amount of fluid surrounding the heart appears to have slightly increased when compared with previous study and clinical correlation is advised. She is scheduled for at PET scan on 4/15/16. Should she be insisting on getting this done sooner? Last PET was in November of 2015 and everything came back fine. 4 months later this happens.

It's been 8 days since this cold started and she's wheezing like crazy

Latest Chest CT shows a "slight increase" in the size of the tumor so she will be getting yet another PET scan on April 14th with results the next day. I don't understand this because her Nov 2015 PET scan showed NO activity at all. She did however have the start of a chest cold the day the CT was taken. So she's now on antibiotics to treat possible pneumonia. And yes she does have post chemo neuropathy but proved to have an allergy to the med they usually use to treat it.

She seems to be doing okay and is down to 10mg of prednisone and holding. I don't think she will ever be able to go to a lower dose than what she is on now. She complains of numbness and tingling in both hands and feet and the Oncologist believes it is due to the chemo meds she recieved. She will be getting her first CT scan of the year on Febuary 1st, so here's hoping that its a good year.

Merry Christmas and Happy 2016 everybody

PET scan revealed no active cancer anywhere in her body. Nothing lit up, not even the old tumor. Next task is to get rid of this "lung specialist".

She will be getting the PET scan the day after tomorrow with results on Friday. The Oncologist says these small "opaque" areas come and go. I know cancer doesn't do that but the Oncologist says she too wants to know if these areas "light up" or not because she has no clue what these things are. I too wish we could stay with one doctor but it seems that, with this clinic, every time a new symptom crops up another specialist gets a referral. The lastest is that none of her usual doctors want to prescribe her pain med so their solution is to refer her to a pain clinic. Hence another specialist. Too many specialists! We did get 1 thing settled. Her cancer is a stage 3A. I'll post the results of the PET scan Friday night. Thanks everybody.

Thanks Randy.

I think that my sister having a lung specialist is a huge mistake. He has her on 40mg of Prednisone and she developed a muscle weakness/nerve problem called foot drop. She ended up falling (without serious injury) 3 times. When we tried to send him email through the clinics email address we got his staff members who told her that the doctor was a pulmonary specialist and she should go to her Primary Doctor. Then their office completely ignored her questions, even when she called them. I finally got pissed off and wrote them an email saying that I found it "despicable" that they were trying to pawn her off on another doctor when its the med that he prescribed that was likely causing the problem. He finally called her back and told her it wasn't the prednisone and that she needed to contact her oncologist for a brain scan and she obviously had "brain mets". We spoke to the Oncologist the next day who assured us that it was simply this foot drop and ordered physical therapy for her. The whole thing didn't sit right with me so I ordered copies of her medical records for the last year and saw that after seeing her once the pulmonary dr. wrote down that she had Stage IV lung cancer. This is NOT a typo as it is listed 3 times in the doctors notes. The initial oncologist (who is now retired) staged her at IIb and nothing was ever told to us about changing the staging of her lung cancer and is part of the pulmonologists notes only. Friday she had her 4th chest CT scan in 4 months and now the pulmonologists PA says everything looks "better" except for a " small 12mm size spot next to what is left of the tumor on her left lung" and they ordered a PET scan for this Thursday. Now they also want to start weaning her off of the Prednisone as of today (even though they didn't change a thing when she was falling). The Pulmonary Dr seems to want to play Oncologist. We are seeing the Oncologist tomorrow afternoon and I am so angry I cant even think straight. We will ask her what the results of the CT scan were and then I plan to hit her with the crap the pulmonary guy is saying she has stage IV cancer and ask what the hell is going on. Thoughts?

Just so everyone knows, and for future reference, my sister was diagnosed with Acute Pulmonary Pneumonitis which is scarring from the radiation that can form up to a year after radiation treatment to the chest ends. This can happen to both breast and lung cancer patients who are treated with radiation. Her treatment will be 40mg of prednisone for a month or two then slowly tapering down to a small 2.5mg maintenance dose.

OMG today the lung specialists office called and wanted to do another chest x ray....really? 2 chest x rays and 3 chest CT scans weren't enough to diagnose this? Wow! We said no! We did consent to a pulmonary function test but it seems to me that these people are just killing time, making it appear as if they are doing something when they really are not. Another of her specialists called today to complain that her kidney function isn't right (contrast dye supposedly messes that up and shes had it 3 times in a month now) so SHE wants to do more blood tests for kidney function. Her symptoms are: Shortness of breath upon exertion (helped somewhat by the 40mg of prednisone), low blood pressure, dizziness when standing, and pain when taking a deep breath.

Tom; Thank you for your reply. My sister only had chemo and radiation because they felt with my sisters age, the location of the tumor, and her other conditions (heart disease, severe rheumatoid arthritis, C.O.P.D.) she would not survive the surgery. The two "patchy" areas have actually been noticed on CT scans since her first CT scan after treatment ended, so since March of this year. These patchy areas didn't cause any symptoms though until about a month and a half ago. It started with occasional shortness of breath with exertion. It got to the point about 3 weeks ago where she couldn't take 20 steps without having to stop and rest for a minute. Her other symptoms were occasional productive cough with yellow sputum, fatigue, feeling dizzy when she stands up, and pain (mostly in her back) when she took a deep breath. On July 14th the CT scans showed that the patchy areas became "more pronounced". Her hemoglobin also went down to 9.3 and she looked pale so they gave her a unit of blood. It helped give her color in her cheeks but did nothing to help her breathing. However, at one point, after the transfusion she was even short of breath at rest. However, through it all, her O2 saturation is always at 94 or above and when they listen to her lungs they sound clear. Go figure... What did help her breathing is when her prednisone was upped to 40mg a day (one week ago). She still gets short of breath with exertion but she can walk more than 20 steps before she has to rest. Without exaggeration, in the past month she has had 22 blood tests (this is the number of tests they ran, not the number of blood draws), 3 chest CT scans, 2 chest x rays, and 2 types of antibiotics and her Oncologist and Lung Specialist have no clue what it is. Her Oncologists Physicians Assistant thinks it is scar tissue from radiation. There are only two areas on the CT scan (according to the lung specialist) one at the top of the left lung (near the tumor which has remained stable) and one at the bottom of that lung. So I guess I was mistaken about the number of patchy areas. My sister was on a chemo drug for her arthritis called Methotrexate and it probably lowered her counts during treatment. Her Rheumatologist thinks that is what caused these patchy areas but everyone is literally just guessing. The Rheumatologist took her off of Methotrexate (which she has been taking since 2003). As a friend of mine brought up, its not like we went to some third world country so its odd that nobody knows for sure what this is. They have to figure that out I imagine before they can treat it. They want to do a bronchoscopy to biopsy it but because the Lung Specialist she saw was such an idiot she wants to wait till the head guy returns from vacation and let HIM do the procedure. She doesn't seem to be short of breath when she sleeps (she does snore but always did) but by the end of the day she is exhausted. They did do an "experiment" by taking her blood pressure both sitting and standing. Her BP went down when she stood up but nothing more was pursued. I told her to contact her heart specialist to see if her meds may be causing this low BP. Low BP can also cause shortness of breath so she will be calling him tomorrow. She sees her oncologist next Friday. I have offered to take her to the ER but she says no. If she gets back to a point where she is short of breath even at rest, I will simply force her to go.

PET scan will not be done because insurance wont pay for it. Now we are just going to wait for the head lung specialist to return from vacation since the guy my sister was seeing doesn't have a clue what is wrong with her. ALL of the tests have come back normal and/or negative. The Oncologists PA thinks this is scarring from the radiation. That actually seems feesable but I have no clue how this is treated or even IF it is treated.

Well since the Oncologist ruled out cancer last month, if something does show up as being positive I will have a LONG chat with the Oncologist and make certain it really is cancer before they subject her to more chemo. Last time she got chemo things didn't work out too well.

No swelling. They even tested her heart last week. Today's results show no blood clots in the lungs. I just hope they don't see anything new in the PET scan on Thursday.

I just had a chat with the PA at the cancer clinic and she thinks it is scar tissue due to the radiation. She feels that the prednisone and antibiotics will help it but that the scar tissue will never completely go away. We pretty much have no choice but to go through these tests on Monday and Thursday of next week and hope that the increase in prednisone helps her. If not I will have to take her to the hospital ER and see what they can do to help her. Her O2 sats were 94, no one can hear anything when they listen to her lungs (no "rails" or whatever else they hear when something is wrong), no bluish nail beds or lips....as a friend said to me its not like we have been to a foreign country or anything so there is no excuse that no one knows what this is. She has had 22 blood tests in the last week and a half because she also lost 2 points on her hemoglobin and had to get a pint of blood last week. She's had 2 chest CT scans with contrast dye and a chest x-ray as well in the past month. Thank God for Medicare.

Whatever it is, I hope it's an easy fix.

Her O2 saturation is above 90 so no one has even offered her O2.

Mouth when she gets breathless but she says normally through her nose.