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going to meet the surgeon tomorrow

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
Tomorrow, Ron and I meet my oncologist and the surgeon and find out what they have planned. They moved the meeting up 2 wks. Evidently, some of the drs will be on vacations later in November so we are expecting an earlier date. Also, my creatinine has been very high and think you cannot get the CAT/PET scan if it is too high. I will be in 14 days after the surgery and this is the full cut one, no laparoscopy. Kind of scared and nervous, but my eating is so bad, thinking I want to get it over with so I can move on and eat something. Keep us in your thoughts and prayers, seems like that 2nd cycle of chemo has knocked me for a loop and still having diarrhea, the creatine problems and swollen ankles or better known as cankles. prayers for you all, take care,
Donna70

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hey Donna,

I think that it's great that they moved your appt. Why put off and all that stuff.
We had our appt. moved up and now are already recovering from surgery, so get ready
you might be next.

GOOD LUCK!!!! WITH A LITTLE EXTRA HOPE AND LOTS OF PRAYERS!!!
GOD BLESS,
KATH

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Bill,
Yes, I am having the full esophagectomy. There will be a cut in my ribs, my chest and my neck. I am happy with my surgeon and they do not do the minimally invasive here. They do about an operation a week, more or less. My dr is well trained but he does not do the minimally invasive operation. I have a lot of faith in him and he answers all the questions Ron and I have and I can contact him anytime. I am not happy about the long hospital stay but I do not want to leave Baltimore and my husband is taking family leave after my surgery. Right now it is scheduled for probably 12/8. They are doing the EGD probably next week and may put a stent in since I have lost a lot of weight and still cannot swallow much. I am all for that. My surgeon wants me to rest and not lose a pound more. Bill, I know you believe in the surgery that you had and that is fine but I want you to believe that there are reasons for the drs who do it the long way. My husband just had minimally invasive colon surgery last year and we were happy for the outcome, but I wanted to be treated here so I am sticking to their plan. Just pray for me next week because they will be able to tell me how the tumor responded to the treatment etc after the EGD. I am in God's hands and trust in him. take care,
Donna70

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Donna,
I had open surgery and it went very well, no complications what-so-ever. I did not have pre-op chemo/radiation though, which is kicking my butt now, but they told me it wasn't needed and after going in, they found the tumor was larger than they thought. In a way I found comfort in knowing they did open me up and could see what was going on all over. My prayers are with you!
Cathy

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
Thanks to all of you for your words of encouragement. My squamous cell is high up in my chest in fact it is between my breasts and the lymph node the bad one is on the opposite side. Most of you have adenocarcinoma so it is lower down by the junction. Like Kitten, mine was thought to be very small less than a centimeter but after the EUS it was staged at three and was in fact 4 cms. It did not show up on the PET/CAT scan at all. So I thank you for your prayers, I am at peace with the open because I want the dr to make sure it has not spread to the other organs and he told us he does that and if necessary closes the person up if he finds out it has spread too far. He is not expecting that. I will need my big girl panties and a lot of prayers. My family and friends here have been very supportive and you all here have given so much information and valuable advice that has been priceless. I will need a lot more when I start trying to swallow and eat. I hope my EGD will go alright and I will be able to eat something more solid than cream of wheat. Just thanks again for all your words of support, they mean a lot to me.Cathy, I am praying that you get a good resolution to your situation. You are the model of courage we all look up to. thanks everyone!!! take care,
Donna70

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Donna ---my prayers are with you....my dad I think is in similar situation as yours---really doesn't want to go any where else for treatment(they are at DUKE), really trust and feel comfortable with their team---my mom actually says she loves them... I think bc it seems that they are so honest and see him as an individual. But I am concerned that if surgery is recommended after re-staging (which we pray it is) that his surgeon may not be as experienced with the MIE. I am jumping the gun, bc we don't even have the follow up scans yet!!! But I talked to them about 2nd opinions---and they just aren't interested--so I know where you are coming from.

I pray that you can even GAIN some weight while waiting for surgery! Keep us informed---keep praying and listening for the "call back" from above---sometimes it is surprising! I have been surprised to find that I am supposed to relax and trust in the future---that God already it it taken care of. I can't comprehend it--but maybe I am not supposed to. I have realized that as I gave up the worry, I am a better spouse & mom though!

HAng in there---let us know what's up. we will keep you in our thoughts & prayers!
Kim

emg09
Posts: 252
Joined: Mar 2009

Donna,

I'm so happy to hear you are comfortable with your medical team. That is a great comfort for you and I will totally keep you in my prayers!! My dad has decided to go with Johns Hopkins. They met the oncologist yesterday and are very happy. We are at a wait and see stage now. Take care of yourself and gain as much weight as you can. Keep us updated as you can. I'll be thinking about you and praying!!

Hugs
Erika

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Erika,
Thanks for the words of encouragement and I am so glad that your Dad and Mom are comfortable with Hopkins and are happy with the drs there. I will continue to pray for them too. Hope you get some answers soon. take care,
Donna70

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

dONNA,

If you will look back on my posts, you will see that Jeff had the open surgery, and he was in the hospital as long as you, of course 12 days of those were in ICU due to his lung capictiy and being a smoker, so don't worry about that. He did fine once on the floor, he started walking, breathing exercie, and everything. DOn't be scared we all do things and heal different tell RON he can do this, I am sure with you having the open, you will have a drain tube, NG tube, and a feeding tube, once you quit draining that tube will come out, then when you take the swallowing test and pass that then the NG tube will come out, and most like you will go home with the feeding tube (JEFF DID) but it does not show and you can hide it under your clothes, its really great they keep that in usually for back up in case you get home and you can eat or something.

I know you will get good results, I just know you will. I too took time of leave off to be with Jeff, i returned to work in about 5-6 weeks, when you first get home you will need lots of help for about 3 weeks, and then you will gradually be able to do some little things by yourself,

If you have any questions please don't hesitate to ask me I know for one what your are going through. REMEMBER THE BIG GIRL PANTIES WITH LACE AND YOU WILL DO FINE.

Lori aka MOE

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Lori,
I thought Jeff had the open surgery too so I am glad to hear your take on the subject and experience with it. I will need those big girl panties and my husband will need big boy pants too. He cannot even watch them access my port so he will be having some trouble with the tubes but most of them will be gone except the feeding tube when I go home. The dr says he keeps it in 6 wks. If during the EGD the gastro dr cannot put a stent in or stretch my esophagus, I may wake up this week with a feeding tube if that is the only way I can get nutrition in. My sister will come and help also after I get out of the hospital and hoping they will let me have some visiting nurses for a week at least to help us. Ron is getting ready for retirement soon so his family leave and vacation will all be bundled up with my post operation time and recovery. He delivers beer so he won't be missing bad winter weather. I am just putting myself in God's hands. I can't control this and when my friends and family tell me they worry about me, I tell them to stop worrying, imagine me in God's hands and trust in God. Thanks for your advice, Lori and everyone here on the board, it is one big family and means a lot to us. take care,
Donna70

OncoSurge
Posts: 21
Joined: Oct 2009

Below is a selected quote:
________________________________________________________________
"...With an MIE hospital stays are shorter, operation times shorter, less time in ICU, morbidity rates less, blood loss less, less chance of infection that can occur from being so long "open" on the operating table, quicker recovery time, just to name a few advantages over the "open" procedure...

If you have a choice, an MIE cannot be improved upon. Statistics have been around long enough now that indicate a "MIE" is preferable unless there are mitigating circumstances that prevent it...."
_________________________________________________________________

I wanted to comment. I have a significant amount of minimally invasive surgical training. I believe it has a place and a time. In numerous circumstances (i.e. gallbladder and appendix), I think it IS the standard of care. The patient and the physician must discuss options and ultimately make the best choice. That brings us to a fact... cancer surgery is not the same thing as taking out a benign gall bladder for gallstones. So, it is risk and benefit. You take out the gallbladder, you do NOT have any risk of the gallbladder "recurring". So, the cosmetic considerations are real.

In esophageal cancer, we have any number of approaches available. In Michigan, you can have a "transhiatal" approach. It is done numerous times and is fairly quick. In other states, you can have a minimally invasive... partially or completely. You can get an open Ivor-Lewis. So, what do we know? I have been to the conferences and listened to the world experts on totally minimall invasive (MIS) esophagectomy. They have great experience. Every patient case needs to be assessed on an individual basis. But in general, facts that need to be looked at are comparison with EXPERIENCED open surgical procedures. Listening to the reports at the conferences and reviewing their publications about MIS esophagectomy, operative times are markedly longer and ICU stays markedly longer and often their "leak rate" is greater.

In practice, I have generally seen open Ivor-Lewis operative times of approximately 3 hours total. The reports from Pensylvania speak of MIS esophagectomy times upwards of 6-8 hours. At 3 hour open operative times, patients are generally extubated (taken off the breathing machine) in the operating room at conclusion of case. Thus, more often then not, there is NO ICU time. Plenty of EXPERIENCED open operative technique centers often report a leak rate less then 2%. The MIS esophagectomy experience reported out of the most experienced and published centers has a significantly higher rate then that.

So, as stated, each patient must be taken individually. Esophageal cancer patients may be quite diminished. You have to consider the overall health of the patient. There can be significant pre-operative weight loss. The immune system can be impaired (by disease or chemo). Radiation & chemo can have an adverse impact on lung function and lung reserves. You have to consider the impact of a significant long operation. MIS operation is consistently reported with LONGER operative times as compared to higher volume experienced open surgeons.

My point is not to say MIS esophagectomy is wrong or to be avoided. I just would hate for folks to believe that some how MIS esophagectomy has in anyway been "proven" to be best or proven to be "standard of care" or proven to be with quicker operative and/or recovery times, etc... Minimally invasive approach absolutely has room for improvement. That is one thing expressed and agreed upon by all the experts in the MIS approach. All the publications speak to the fact (and problem) that often we are comparing apples to oranges. The MIS esophagectomy or MIE if one prefers may be performed in an earlier/lower stage cancer then say the open. One may be comparing a high volume MIE center to a low volume open surgeon.

A surgeon may perform numerous esophagectomies per year. He/she thus has that experience to draw from and recommend from when dealing with the individual patient. Each patient, like yourself, and God willing, will only have that cancer experience in their life. It is potentially the most significant experience in their life and so that single experience may affect their perspective. It is not uncommon to have a patient at a one year follow-up mention not understanding or not realizing important components of our discussion as to their operative care. In my experience, patients spend years gaining an understanding of their individual experience.

Best wishes

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Thanks for the info I feel better now with hubby having open in July.

Thanks for letting us know and this should help Donna alot

Lori

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Thanks Bill for all the info and explanation. I understand what you mean. Whatever works for the patient is the way to go. Before I have my surgery, I will have a pulmonary function to make sure my lungs can handle the surgery, of course the PET/CAT scan and also a doppler on my legs to make sure I am not harboring any potential blood clots before surgery, so I am confident that I will be in good shape for the actual surgery. When I mentioned the food tube I was trying to say that I may come out of this weeks' EGD with a food tube if the gastro dr feels there is no other way for me to get proper nutrition. I would prefer the stent and the food tube with my Esophagectomy and not before it but I will abide with whatever happens. Thanks all for the encouragement and prayers. I will keep you updated with what is going on before the surgery. thanks again,
Donna70

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