Facing Thoracotomy. Need help please. - 1247350

dawnr
Posts:4

First, thank you for giving so much of yourselves to strangers in need of a place to turn.
* 47 year old non-smoking female.
* Two bouts of pneumonia, May 2011 & March 2012.
* CT Chest March 2012: 3.2 cm. right hilar mass.
* PET scan: 4.5 SUV peripherally; 2.5 SUV centrally.
* Fine needle + core biopsy non-diagnostic.
* Bronchoscopy: Mass was too deep to reach; washings/brushing non-diagnostic.
* Diagnosed as infectious process, likely aspergilloma. Advised CT surveillance.
* CT Chest 08/13/12: Irregular shaped mass, spiculated margins, 6.5 cm. x 3.3 cm. x 5.6 cm. medial portion right upper lobe, abutting anterior mediastinum and cardiac border; extends into hilar region. Increasing postobstructive atelectasis. Right upper lobe pulmonary vessels course through the lesion. Increasing patchy ground glass material within inferior portion right middle lobe. Irreguarly-shaped nodule 9 mm. right lower lobe. Impression: Likely bronchogenic carcinoma; 9 mm. nodule in right lower lobe may represent ateletasis or a metastasis.

I am now back to CT Surgery, being told my only option is open thoracotomy & at least RUL lobectomy. My questions:
* Is open thoracotomy truly my only option?
* It is my understanding that this mass may have invaded the pulmonary artery and is sitting right next to the heart. Are those influential factors when choosing surgery?
* Would growth from 3.2 to current 6.5 cm. be considered significant or slow growth?

I am in Pennsylvania, all of this has been handled at Penn State Hershey Medical Center. I would like to thank you, with all of my gratitude, for giving me a place to turn.
Dawn

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Reply # - August 26, 2012, 11:15 AM

catdander
Posts:

Hello Dawn and welcome to Grace. I can only imagine the worry you are going through. A second opinion is aways considered a good option before undergoing treatment. However you're already being seen at a high ranking cancer center. A dedicated thoracic surgeon who does a lot of thoracotomies is the surgeon you want. My husband went through much the same at diagnosis, not able to get a diagnosis any other way. We thought a cardothoracic surgeon would be able enough however after 3 years (to the day) he still has a lot of nerve pain associated with the surgery. Dr. West has noted many times the importance of knowing that the surgeon's skill level correlates to his/her experience.
I will email a doctor to comment on your questions. You should hear back by the day's end.

All the best,
Janine
forum moderator

Reply # - August 26, 2012, 11:24 AM

double trouble
Posts: 573

Dear Dawn,

I can't answer any of your questions but I can tell you that I am also facing a similar situation, so I can guess where your mind is taking you right now, and how frightening it all is. This is a wonderful community for support and information and I know your questions will get answered soon. I just wanted you to know that I will be watching for your updates and I am hoping for the best possible outcome for you. When it all seems too overwhelming try to remember that we at Grace are pulling for you and we will be sending prayers and good vibes your way.

Debra

Reply # - August 26, 2012, 02:00 PM

Dr West
Posts: 4735

The issues about whether surgery is advisable is very individualized and not something we can offer -- only someone directly involved and reviewing the films could really do that justice. Surgery is never the only option, and I certainly agree that it's always reasonable to seek a second opinion. Penn State Hershey is a good center, but it's still perfectly appropriate to speak to more people before making a big treatment decision.

The change in dimensions that you describe is what I would consider to be pretty significant, not particularly indolent.

Good luck with whatever approach you pursue.

-Dr. West

Reply # - August 26, 2012, 09:18 PM

dawnr
Posts: 4

Thank you all so very much for taking time to reply. Your kind words, support, and advice are greatly appreciated. I must say that I feel incredibly guilty for not being grateful for the chance to have surgery. I am sure there are many people who would wish to be in my position.

I am very unsure about proceeding with open thoracotomy for diagnosis. My health situation includes a very rare blood complement deficiency called hereditary angioedema, and I have systemic lupus as well.
I know everyone is different, and I know this probably sounds ridiculous but the potential aftermath of thoracotomy is preventing me from following through with it. They told me they could not treat anything without a definitive diagnosis and I do understand that, I just wish there was a less invasive way to go about it.

Thank you all again, so very much, for your help.
Dawn

Reply # - August 27, 2012, 02:27 AM

certain spring
Posts: 762

Hallo Dawn, just wanted to respond and offer another word of support. Your fears/reservations about surgery don't sound ridiculous at all, just properly cautious, especially given your other health problems and the twisting road you have travelled to get to this point. I am particularly sympathetic to your experience with pneumonia, which is horrible and debilitating as I know to my cost.
It seems to me that you need to sit down with a doctor from the surgical team who are proposing the thoracotomy and go through the pros and cons (and to get the scan results translated into comprehensible English!) I notice Dr West thought a second opinion would be reasonable, and wonder if you have seen this useful post by Dr Weiss about how to approach that:
http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
It's very tactful of you to think of others who can't have surgery, but I don't think you need to be concerned about that. I'm one such person and I don't mind - I would be afraid of it myself.
Please come back to us if you need more information, or just help in holding your nerve. Hope you are feeling OK.

Reply # - August 27, 2012, 07:44 AM

marisa93
Posts: 215

Dawn,

I am sorry that you have a need for GRACE but am glad that you found it. This is a wonderful place for support and information. Wishing you all the best.

Lisa

Reply # - August 27, 2012, 10:09 AM

dawnr
Posts: 4

Thank you, certain spring, for your insight and for sharing the article. Thank you as well, Lisa, for your warm welcome. This website, and more importantly the people in its communities, have been so wonderful. I started a new topic (I hope that is proper forum etiquette) after a phone call that I just now received.
With gratitude,
Dawn

Reply # - August 27, 2012, 10:53 AM

dawnr
Posts: 4

Hello once again. In follow-up to my 1st post regarding my need for open thoracotomy, I just received a call from the cardiothoracic nurse. The procedure, if I can come to terms with proceeding, is scheduled for Thursday: EBUS bronchoscopy, attempted VATS with probable conversion to open thoracotomy and removal right upper lobe. The mass, 6.5 cm., is sitting up against the heart. If I understood correctly, the location (not size) will require conversion to open thoracotomy. They now would like my consent for use of robotic arm. She said nothing changes except "a steadier hand". Conversion to thoracotomy would not change.

My questions:
1. Am I correct in my understanding that it is not so much the size but rather location of this mass that has led to the recommendation for open thoracotomy?
2. Anyone have any information/experience with robotic arm technique?
3. Is it a reasonable thought to obtain biopsy via VATS or robotic arm, and not transition to open thoracotomy/resection?

Thank you for your patience and insight with me. I am extremely concerned about open thoracotomy for diagnosis (and even more concerned about post-thoracotomy pain syndrome).

Your kindness & support are so greatly appreciated.
Dawn

Reply # - August 27, 2012, 12:10 PM

catdander
Posts:

Hi Dawn,I merged your threads. You didn't need to start a new one. The only reason for that would be if you had questions about another subject like chemo treatment. That way it's easier to find for others looking for the same type of information.

One reason to do an open thoracotomy is if the whole tumor can be resected and there is a possibility of a cure. Another less common reason is if a biopsy/diagnosis has not been successful any other way.
In most cases a VATS will be able to catch the cells they're looking for for a biopsy.

Janine

Reply # - August 27, 2012, 03:37 PM

drfarivar
Posts: 5

There are always options. I like to establish a diagnosis first if possible (before the ultimate resection). I do not think a minimally invasive approach-either VATS or robot-is a good option for you. I would recommend a brain MRI and a mediastinoscopy to rule out advanced stage disease before a lung resection is performed. I think from what I read-and I cant be certain unless I saw your films-that you would need at least a right upper lobectomy, but maybe a pneumonectomy given the location of the tumor. A sleeve resection is also an option but is done mostly in expert hands to preserve lung parenchyma if possible. A sleeve is a more complicated operation but can sometimes be done in these circumstances. This isnt known until the operation. An experienced surgeon will use the mediastinoscoy dissection to help with the eventual resection (esp if a sleeve is considred) and so will plan those 2 operations to occur within a few days of one another-if not concurrently. Pericardial or arterial invasion is definitely a consideration for surgeons and is partly why I think you are best off with a thoracotomy. Best of luck

Reply # - August 27, 2012, 03:41 PM

drfarivar
Posts: 5

I think a biopsy via CT guidance, EBUS, or VATS is reasonable. I do not see the need for a robot for your case. The size and location of your tumor justify an open approach. I would not recommend completing your case-if begun with a VATS-by minimally invasive approach-robot or VATS.

Reply # - August 28, 2012, 06:31 AM

catdander
Posts:

Thank you very much Dr. Farivar, as a thoracic surgeon your input here is quite valuable.

Dawn, I hope this has answered some of your questions. I'm very sorry you're going through this and can only imagine the struggle going on inside.

I want to add that my husband's was an individual case and 3 years later we are taking motorcycle and canoe trips. My point was that you want a surgeon who specializes. I assume Hershey has dedicated surgeons that specialize in thoracotomies (do this type of surgery daily). You can ask about the surgeon's records, how many CT and Thorac surgeries he/she does.

Let us know what you've decided,
Janine
fm

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