Others who have had lobectomy

BrendaMousey
3 Recommendations

Hello out there:
I am a new member starting today. I had a left upper lobectomy May 23,07 My cancer is NSC 1B No chemo, no radiation, scans every 6 months which have been OK so far.
My question is that I still have a lot of pain, in all my ribs on that side, my left breast and under my breast, also sometimes in my shoulder. The ribs are the worst. Has anyone out there experienced this or am I just a big baby? I never thought I would have pain this long. My surgery was done the "old fashioned" way, NOT through a scope. The doctors said that made a difference in the pain. When I asked him if the pain would ever subside, he said "eventually."
Any information from someone who knows what this is like would be appreciated greatly.
Thank you,
Brenda Mousey (my dogs name is Mousey 3lbs 6 oz)

38 replies

Toddy

Hi Brenda,

It sounds that your on track. My upper left lobectomy (ULL) & most of my lower left lobe was taken in July of 2006, followed by chemo, I was 1 B. If by old fashion way you mean a full thoracotomy with the use of rib spreaders then like myself you have been in no small way internally traumatized. To this day I have discomfort and what I call ghost pains in all the areas you've mentioned, I also have areas where damaged or cut nerves can cause numbness or sharp momentary pains and on occasion after I've used my left arm a lot I can still have some edema around the incision area.

I'm sure it varies from patient to patient but my doctors tell me there will always be at least some discomfort. Severe continuing pain in the rib and chest area would be a different story and something that needs to be discussed with a doctor.

Best wishes,
Toddy

texatl

I had an ULL 5 months ago and still have some residual pain. I too had the full procedure and my ribs remain tender. Most irksome has been little stab-like pains around my left breast.

I have been put on Lyrica for a month now and it has done a good job. I would recommend it to you.

rabeaz

Hi Brenda,
I had my ULL 10-06 and I still have similar pains. I think that's the price we have to pay, surgery has a high survival rate. I have gotten used to it. The pain has waned down to a 4-5 over the years.
Best wishes-Laurie

meadowbreeze

Hi Brenda,
This might surprise but I have had that pain under my right breast in the rib area for about 2 years. It comes and goes and sometimes when it's there is it very annoying. You just keep rubbing the area in hopes that the pain with go away. Pain meds will help with it.

I notice that when I carry something heavy on my right side (right lobectomy) I feel the pain.

It's nerve damage from the surgery and that takes a long time to heal.

So you are normal with this.

God bless
Linda

Gretchen

My lobectomy was last November and I thought I was imagining the pain I still have in the rib cage on that side. Glad to hear it's real. Since I do have metastasis to a rib on the other side, the pain worried me a little, even though it's not nearly as severe. So on all fronts, thanks everyone for the reassurance that it's normal.
Gretchen

sb

Hello,

I had an upper left lobectomy in May or 2005. The first year was full of scary chest pain that I was always afraid of. I still have residual chest pain but it's not the persistent pain that I had before I had my tumor removed - cancer pain was different for me. This pain is just a result of all that cutting and the chest tubes, etc. It's more of a stiffness - with occasional muscle pains. It gets worse with wet, damp, cold weather.

You sound like most of us who have had the thoracotomy. They did a study I think at Sloan in N.Y.C. about post-thoracotomy pain syndrome. So it is a very real thing that happens. But it's not caused by cancer. That was something that I wished I knew - I was always afraid it was the cancer returning.


Sharon

erinroro

Brenda,
My RLL surgery was 12/07 and I am still in pain. All the types that you describe. I saw my surgeon last week, and she said that pain may be there for a couple years, but getting better as time passes. I use a Lidoderm patch on the area under my right breast almost every night. It does help. Also, as texatl said, Lyrica helps. Not to mention Oxycontin when the pain is really bad (like after lifting things, or like the first time I tried to swim post surgery! Oh my goodness - it was fine while I swam, but later that evening and the next day I thought I was going to die!!!).

Good luck to you! And remember - we are not going nuts! The pain is real, and don't let anyone try to tell you any different!!

Erin

DorisElaine

Hi, I also had the same surgery in 2004. When I get real tired or try to do certain chores my back and shoulder hurt a lot. I don't think it's getting much better, so when it happens, I just rest for a while, then resume my activities. I wonder if mild arthritis has set in where they cut the ribs for the surgery.

Marylou1

Hi:

My surgery was for right lower lobectomy on June 21, 2007, which the doctors did from my back. It seemed strange to me that the area where my chest tubes were hurt worse than the incision.

To this day, the area where the chest tubes were and the ribs right above them hurt especially if I lift anything or if I press on that spot.

I asked my surgeon about it and he said no doubt there was some fractures during surgery that would cause that pain, but it cannot be helped in order to get to what needs removing.

Mine is not so bad now, and did take a very long time to get tolerable. Hope this helps.

**Hugs**

Marylou

deebeefran

I had my bi-lobectomy in June of 06 RLL. I still have pain under my rt breast with numbness. I also always feel like I have a hatchet in my back and a knife in my shoulder. It depends on the weather and how much I do with my right arm as to how much it hurts. If I take clothes out of the washing machine or take groceries out of the cart, I will be in pain throughout my shoulder region for weeks. I use to be able to pick my house up and dust under it, now I have help with everything. I read my original post surgery scan and it said I had healing broken ribs. I was also told that they way we had our surgery, someone was actually holding our arm pulled behind our head to keep the rib cage up. No wonder we have nerve damage!! Anyone else have alot of trouble with their arm on their surgery side?? Check out this report on post thoracotomy pain. Dianne
https://oa.doria.fi/bitstream/handle/10024/2245/painafte.pd

peyz33

I have VATS - very different but I had adjunctive chemo afterwards...no rib spreading - thank GOD.......hope you heal quick and wake up one morning and say - "Huh - no pain today!"
Karen

janet54

Boy do I hear you! We share the almost same dianosis. Its been 1yr.6months since I had an upper right lobectomy.As you did,I also had it done the old way. I have a huge scar and 3 more where the tubes were placed. I had and still do have the exact symptoms as you. The pain makes it unbearable to even wear a bra! So I dont ! I went to several"pain clinics" for me,waste of time.I had needles stuck every where to numb the pain.It did not work for me. I wear a fentanyl patch,actually 2 of them because I am on 200mcg. and 1 patch only goes to 100. I will probably get blasted because the patchs got some bad press.I really don't care because they work for ME,each person is different. In the last few months I have been taking neurontin,this med. helped me alot. I was told this kind of pain comes from the nerves that were damaged during surgery.Having to break ribs to get the monster out does this.My onc said the pain is commen in some and may never go away,but it will lessen in time. Trust and believe you are not alone. And remember,their is no such thing as a dumb question.The people on this site are wonderful and helped me through alot. Just curious,What were you told,why you did not need any other treatment? Lots of different opinions about that subject. My surgeon told me the same thing but when I went and fortunatley found a great onocologist,in MY case I should of had chemo. I did'nt and I was to far out from surgery to do it then. Each case is different and I am only asking for myself. My best to you and keep coming to the site......Janet

HighlandGuy

I had my URL lobectomy in November 2000, conventional (spread ribs), no chemo or radiation. I feel a "pulling," sensation and occasionally pain when I am tired or exercise too much. I do have to sleep on that side to aid in breathing (compounded by relatively severe COPD). I have no problem tolerating it. I have medication to aid in breathing, but don't take pain medications for lung surgery. I am just thankful I am NED, not only for my lung cancer, but the bladder and prostate cancer I had at the same time.

SAnnR

I had a lower right lobectomy in March 2008. I have the exact same symptoms you are experiencing. I am actually relieved to hear that it's not all in my head. Right after surgery most of my pain was in my back and the right chest and breast were very numb. The back pain is minimal now but the chest and breast pain have gotten worse as the numbness is going away. I have to remember to do things in moderation, which I don't always like, but I'm getting more accustomed to it and try to take things as they come and try not to get myself all stressed out.

D1

Dear Brenda,
I'm sorry you feel pain....hopefully, time will be your ally. My husband, like you, was dx Stage 1 B, but they recommended Adjuvant Chemo which he did. The Chemo was far worse than the VATS surgery and left him with neuropathy. So, although you didn't get the VATS at least you didn't need the chemo. Stay well....Reclaim your life.

bridgett75

Hi, I had my surgery aug 07. I had my lower right lobe removed. After 2 months I felt pretty good. And it didn't matter. I knew it was my best chance for survival. Something that is hurting now is across the middle of my back where the bra goes across. I just had a pet scan so I guess it would have shown up, if there was anything there. Has anyone had pain in this area from the surgery? Thanks, Bridgett

marciag

First off congrats on catching the CA early... I was diagnosed with 1A NSCL last May. I had the 2 RUL removed last June... again the old fashioned way.. I wasn't a candidate for chemo as I have hearing issues. Plus my team said the risk would outway the benefits. I have more problems with the drainage sites. My internist tells me I've developed a keloid scar over the area,,, I itch, have pain.. and when it rains.... my entire right side aches..... but as the other survivors say... vitamin E.. aloe.. sometimes aleve do help. . I look at it this way.. I was one of the luckiest people to have caught the CA early and if I have to withstand some discomfort from it.. so be it... I've seen a number of friends withstand chemo & radiation for other types of cancer... I'll take the rib pain any day!!!

COngrats& keep smiling!!

RebaB

I also have done well with lidocaine patches under my breast. Good luck!

erinroro

Hey! In regards to the breast pain, the best think I have found is a really tight sports cami from Target. This is what they are named - C9 by Champion® Long and Lean Tank. My suggestion is to get them at least one, if not two, sizes smaller than you would regularly wear on top. I am a X-large woman, (trust me on this!) and I wear the large size for just around the house (although my right breast still sags about an inch or two more than my left!!!). I ordered some XS (as in extra small!!!!) and they are perfect for when I walk or do any exercise!!! Ladies, (and Gents if you are reading this) I weigh 190 lbs!!! So get these, but get some for just around the house, and get some for when you are going to do anything that might make your boobies droop.

Hey, we are all going through the pain of the surgery, we don't need to have heavy boobies add to the pain!

As I mentioned earlier - the Lidoderm patches help.

Hope this helps my friend!

Erin

BrendaMousey

Dianne, Thank you so much for your reply. I am sorry that you also have had this much pain but it appears this is a very traumatizing surgery. What you describe is exactly what I feel. I couldn't use my arm at all right after surgery, now can use it but it hurts, so I am thankful for that. Also especially glad to know weather makes a difference for you also. I think I would qualify now as a meteorologist. The only big surgery I had in the past was a c-section so was shocked by this one. Besides, I got over the c-section and I got a really cute baby in the deal! (in 1980)

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