View Full Version : Anyone with Lupus had Major surgery?

Merrilyn OZ
03-10-2011, 06:12 PM
Hi everyone have'nt been around for a while, been coming to terms with my medical problem.
As some of you know at Christmas time I had a biopsy that revealed early stage oesophagal cancer. I now have two Specalists with opposing views - one says surgery definitely the other who is the Oncologist surgeon says wait and see - however both options are high risk. The surgeon thinks that as my skin is fragile my organs may also be due to the Lupus and Pred usage and that the interrnal surgery sites may breakdown. But if I wait then the Cancer may spread - at this point there does'nt appear to be any other organ involvement.
Just wondered if anyone has had surgery and how they got on.

03-10-2011, 06:49 PM
Hi Merrilyn. Sorry to hear of the diagnosis, lupus & cancer are both hard enough on their own, but combined..........(((HUGS)))! I had my gallbladder out in the fall. I would say it did take me longer to recover than from previous surgeries, but nothing horrible. Hope that everything gets worked out w/the docs.

03-10-2011, 07:05 PM
Hi and hugs,
I tend to agree with the surgeon; I had hard enough times healing before the pred, when I took it my skinand veins got so bad they destryed my arms just trying to draw blood at the ER. But you need to do what's best. Talk itover with the docs; they are in on this too. You're all working together to beat the cancer.

Hugs Toni

03-10-2011, 07:11 PM
I am so sorry to hear the outcome of your testing. I don't have any advice about your surgery or no surgery but I wanted you know that I will be thinking of you as you get this sorted out. I am always here if you need to vent

03-10-2011, 08:32 PM
Sorry to hear your having such a hard time. I have had surgery, not what I would classify as major. I just had my forarm operated on (2 and a half hours long) to retrive 5 pieces of glass and to drain the wound. I had to have IV steroids before and during because I had an adrenal crisis (I was unable to take oral pred and the adrenal glands had stopped working) back in Jan, so they didn't want to chance the stress on my body having the surgery. It is also hard to heal after surgery while on pred. My arm is still draining and bleeding almost 2 weeks after. I also just found out I amy be facing heart surgery for an arrythmia problem. But that has not been confirmed yet. I should know in the next few weeks. I also had a kidney biopsy almost 2 summers ago. I was not on pred at the time, however because I have to take blood thinners by injection that complicated everything. I hemorrhaged from my muscle and kidney (despite them messing around with the blood thinner 2 days before). I also had a collapsed lung on the same side as the biopsy (due to all the blood that had accumulated in my abdomen) It took me 5 weeks to recover from that. I also had knee surgery which I sailed through. Sounds like you have a hard choice to make. I hope your docs can help guide you.


03-10-2011, 09:20 PM
hi merrlyn,

wow, i can understand why you have spent time "coming to terms".....you have been hit really hard with a frightening situation.

I have had two surgical procedures. I take chemo and am not on prednisone, but my recovery was definitely slower that with most people. I was afraid that the surgery would cause me to go into a flare, but it did not. The attending medical staff were all very cautious and careful with my case. They took extra time verifying different meds, procedures, etc. I am sure you will be treated with great care also.

I do have some experience with surgeons and oncologists. I have found that neither one knows what the other one does, and that they do not work together. the surgeons always have one viewpoint, and oncologists have another. they approach the fight with cancer from two angles, and they just have not learned how to "play well with each other." lol

Just keep this in mind, and go with the dr. that your instinct agrees with. Also, when my daughter was first diagnosed, the drs, kept telling us that we had time, that we did not have to rush into anything.....but, we were to scared and the wait was almost intolerable. But, they were right, it was ok to take some time and make sure of our decisions.

wishing you the best of luck, merrlyn, and sending you gentle hugs.

please keep us posted.

03-11-2011, 05:41 AM
hi merrlyn,

it is steve here, also from perth. i found that because of our lower imune system, every injury takes longer to heal. I had a tooth pulled recently. i was on antibiotics, but still had an infection.

Neither choice is easy. it will be a long road eitherway. surgery is not an easy choice, but if it is needed, i reccommend consider it.

try to come to terms with whatever you decide, stress will definetely start a flare up. enjoy every day, one day at a time.

03-11-2011, 07:17 AM
I kinda think that anything we have to go through medically is a challenge from these dieases. Right now i am having a sinus infection and feeling like i had the flu i said to my doctor that in the past i would of just let it run its course but now i cannot he said you are right, everything is different with this diease. Bonita

03-11-2011, 07:25 AM
Hi Merrilyn,

I haven't posted in a while either. I'm really sorry to hear about your diagnosis - lupus is hard enough without cancer too. That said, I have thyroid cancer and I'm getting ready for my second surgery in a few weeks. I did well with the first surgery in July, and what they did in pre-op was give me a shot of prednisone. They said that would reduce the risk of a major flare, and it DID!! I had considerable fatigue for about a month after surgery, but I was able to go back to work in the fall feeling pretty good. I'm hoping the same will happen after the completion surgery I'll have soon, and I will ask them to give me a shot of prednisone again.

I asked my rheumy for her advice about all this - should I have surgery or hold off? She said, "The first priority is to save your life. Go have the surgery done!" She hasn't steered me wrong yet (this is the rheumy I like and trust) so I'm moving on.

Whatever you decide, I hope all goes well and you are at peace with your decision -that is really important.

03-11-2011, 07:36 AM
Hi Merrilyn!

I can't add any advice b/c aside from the lymphendectomy I never had any surgery. Just wanted you to know I've been thinking of you and I am so glad to see back on here. I know things have been really tough and that you are going through an emotional upheavel on here and you are in my thoughts and prayers. I think I've seen another link on lupus and cancer on here. I'm pretty sure you can search cancer and on here and find it - if I didn't imagine it that is. What are you doing with yourself while your doctors have you waiting? I know you weren't allowed to go back to work before but is that still the case? I hope you have something else going on at the moment, something positive, so you are at least getting a small mental break from all this stress. (((hugs)))

03-14-2011, 05:49 AM
hi merrilyn,

just got back from my nose specialist.
i had a farely big synus operation 2 weeks ago.
went in to have the last of the plugs removed.
I CAN BREATHE !!!!!!!!!!

had problems for many years.
i went into the operation positive.
spoke to my doctor and rhummy about it.
both the anethatist and surgent (however it is spelt) knew of my condition.
they all reccomended my surgery and adjusted my meds to suit.
took extra antibiotics post surgery to stop any bad bugs.

my reccomendation if surgery helps - - - do it.

Merrilyn OZ
03-14-2011, 07:52 AM
Thanks everyone,
Its great to know that there's so much positive energy coming my way. Great to know that those of you who have had surgery have such positive outlooks about it. I'm certain that if the outcome of my appointment on Thursday is surgery I will go forward with a positive outlook it takes alot to knock me down but I have to say that this diagnosis did knock me for a 6. The family always say tell me I can't do something and I'll say just watch me.
I have had a knee replacement and a Rota cuff op and an Abdominal Aortic Stent done with no problems. So I'm determined that if I have surgery I'll be fine despite the surgeons reluctance to put me through such a major procedure.
Again thanks every one for your post.
Steve if you're up in Perth for any appointments pm me we might be able to arrange to met for a coffee.
Hugs to you all

03-14-2011, 02:34 PM
dear merilyn i am sorry you are going through this i had gall bladder operation and it took awhile to heal and when i get viruses or the flu it takes longer for me to recover you have to do what is best for you we will be here to support you know matter what you decide hugs kim l