Intro to Me - Shelkay1

[Shelkay1]

I'm still somewhat of a newbie to this "C" thing & to this group. I was diagnosed with lung adinocarcinoma by a biopsy on 6/20 athough I've had been getting cts for the past 17 years monitoring spots they had said they were too small & too close to my heart to biopsy. This years CT showed the primary tumor almost tripled in size; now needing to be biopsied. My pulmonologist was very hopeful they'd find it was a fungal infection which could be treated with meds. Not the case! I read all I could get my hands on about treatments for this & almost everything says my best chance of beating it is by a lobectomy. My largest tumor is about 7x3 cms in size,  only in the lower left lobe, I also had a PET scan, a bronschcopy and a medianoscopy to confirm there is nothing in the lymph nodes. They have not given this beast in me a stage #, saying nothing is certain till after they get it out.  Based on its size & there being more than one in the same lobe, my guess it is a 2a at the minimum. I'm scheduled for a lobectomy on 9/14.

This "C" really messes things up! We were on our dream vacation last week on a 2 week sea/land tour in Alaska. Even though I was careful about handwashing & using hand sanitizer, I managed to get a lower respitory infection; we had to cut our trip short & come home a week early. I should be there in Alaska now.

For the ladies out there - I have what may seem a trivial question: with where they do the incisions for a VATS lobectomy; what do you do about wearing a bra?

[Laurel]

Staging early on usually doesn't remain the same. In November, 2017, after lots of tests, I was staged Ib. After VATS, where my top right lobe and lymph nodes were removed, I am IIIa. I am so glad to hear you are having the video assisted surgery. It is so less intrusive. I was in for surgery Friday and left on Sunday. The 4 incisions on my back never bothered me. The air tube in front was where pain would be felt later, along with muscles. The pain was controlled at the hospital and not that bad at home. I took Gabapentin pain pills and used Salon pas pain patches as needed when I went out in the world. I rested on a reading pillow with other pillows stacked up. I walked every day starting the day of surgery. I didn't wear a bra for several weeks. Then, I ordered several styles of maternity bras that were o k.

I am sorry you are going on this journey. Ask any questions. There are very supportive people here.

[Shelkay1]

Thanks Laurel! That's what my doctors told me about why they are not staging it. 

I'm rather large busted, going braless will be a challange; where doc says he'll be doing the incisions, it might be necessary.

VATS is the plan going in, but he did say there's a 25-30% chance he may need to switch to open because if where the tumors are located & the inflammation in the area.I have also read that going open is always a potential in every case & they prepare us just in case.

[Steff]

I'm sorry to hear about your diagnosis, but it sounds like if they've been watching it closely, they have likely caught it before it spread much.  How awful to have to cut your dream trip short  

My mom did not have VATS, she had the regular 'ol big incisions.  I don't know if it's much different as far as being able to wear a bra, but my mom didn't even think about it for a couple of weeks.  After that she tried out different kinds of bras, including ones for mastectomies - nothing worked, everything rubbed on the incision. So she resorted to wearing tight cami's, supportive cami's.  It made her feel comfortable enough to go into public that way.  Luckily, her surgery was in the middle of winter, so she often wore jackets to add more coverage. 

[Tom Galli]

Shelkay1,

Welcome here.

Sorry to learn about your diagnosis and especially given your shortened vacation in Alaska.

You are well accustomed to scans apparently and unfortunately, the primary tripling in size is a metastatic lung cancer indicator.  I didn't have VATS.  My tumor was larger than yours but confined to the main stem bronchus of my right lung so a complete removal of my lung was performed.  Even so, pain was not a problem.  I picked up an infection and landed back in the hospital and during treatment, my sutures ruptured.  That event led to almost a year's worth of corrective surgeries so I have a lot of thoracic surgery recovery experience.

I'd start to focus on life after discharge.  Think about purchasing a wedge pillow.  Most find a position that elevates the back transfers weight to the hips and reduces suture pain.  Go to a mattress store and audition pillows, then buy the one you like on line for a price advantage. Most find a 15-degree wedge pillow does the trick.  If you have access to a pool, then after your incision sutures are removed, stand or sit in the pool in water up to your neck.  Buoyancy will lesson the gravity tug on your incision area and reduce pain. You may be discharged with a chest tube installed.  The tube itself is not painful but depending on position, it could be difficult finding a comfortable position sitting or sleeping.  Thankfully, my wife had an assortment of little decorative pillows that we arranged to shield the tube from most of my weight.

I'm sure the ladies will weigh in about your bra question.  More questions? This is the place.

Stay the course.

Tom 

[Shelkay1]

Thank you Tom! I'd thought I had read amost everything out there about NSCLC, but now having my eyes opened to even more. I've read all the stories on RedToeNail & am now reading your book. I have faith, but can't fathom having all the strength and courage to battle this disease as so many before me have. Where does that all come from? I still have a lot of life to live for - with a great hubby, six daughters, 6 grandbabies & another on the way; I'm already sick of being sick & I'm still a newbie in this journey

[Mamma Om]

Hi Shelby, Hang in there. I had a lower right lobectomy in April for a biopsied adenocarcinoma and at pathology they also found another tumor, first diagnosed as small cell. Very quickly plans were made for extensive chemo and radiation and I had IV port surgery. AT the last minute the tumor board was consulted and that second tumor turned out to be a rare neuroendocrine carcinoid. Since it was removed with the lobectomy no further treatment is necessary. This is my 4th cancer diagnosis and surgery. Now they''re looking at my liver and two more nodules in my middle lobe.  To answer your questions: 5 days in hospital were difficult but they kept pain under control. Tube out my side but removed before I went home. Fair amount of pain at home but again, used pain pills until it gradually lessened. My lobectomy scars were 3 on my right side and one on the back. I couldn't wear a bra for two or three months, but now it's fine. Trust in your doctors, ask as many questions as you need to, lean on your husband and daughters when you need to, and you'll get through this. Best wishes to you. Mamma Om.

[Shelkay1]

Thanks, one can never have too many Mommas on their side!

[Roz]

Shelkay1,

I'm sorry to hear about your diagnosis. I had VATS to remove my lower left lobe 9/2017 and then a thoracotomy to remove my upper right lobe 10/17. I found that the healing from the VATS was quicker, but I still needed to avoid a bra. After the thoracotomy, I still find it difficult to wear a typical bra. I wear a camisole under clothing most of the time as that is the most comfortable ten months post. But I also found a bra company that makes a very comfortable bra that I bought online. If you end up needing the info, I"d be happy to provide it. In general, lose fitting and comfortable clothing will be best until your incisions heal up.

 

Best of luck and let me know if you I can answer any more questions.

Take care,

Ro

[Laurel]

There is no doubt that this can be an exhausting journey and that there are days you just want to kick and scream. I have one friend who I feel comfortable dumping my "uglies" on. It feels good to vent. With other family and friends, I share but don't necessarily vent. It is a one day...sometimes one hour...at a time journey. Reach out to others. You don't have to do this alone.

[BridgetO]

Hi Shelby and welcome. I had a VATs lobectomy in November 2016. I was only in the hospital one night and I was sent home with a chest drain tube in place. I had it for 10 days. My recovery was pretty easy and I had very little pain once the darned tube was out. Once the tube was out I was able to wear my normal bras . I didn't have the lingering pain around the incisions that some people have. Until the tube was out, I wore mostly baggy shirts and when I went out I wore an oversized raincoat to cover the tube and bag (and lack of bra) .I looked like a flasher! 

I hope that they're able to accomplish your lobectomy by VATs and that your recovery is as easy as mine.

Bridget O

[Plucky]

My surgery was not VATS, it was invasive as they removed lower left lobe. It made me crazy not to wear a bra, but a bra hurt.  I just never felt dressed without!! Used a super super soft camisole then bra ontop with an extender. Some ladies use a nursing bra. Hugs & prayers for full recovery