Thymoma

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Thymoma

by Shellybean on Mon Apr 23, 2007 12:00 AM

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Hi, I was just wondering if there are any long-term stage 3 or stage 4 Thymoma survivors out there?  My mom was just diagnosed with Stage 3 inoperable Thymoma, Type B-1, right before Christmas 2006.  She is 63 years old.  She just finished four rounds of Chemotherapy (one treatment every three weeks for a total of four treatments).  We had a CAT scan today and the cancer has shrunk.  A Thoracic Surgeon is supposed to review the films and contact us this week regarding whether or not the Thymoma is now operable.  If not, we were told by her oncologist that he would just take a "watch and wait" approach scheduling a CAT scan every 3 months.  He stated if the cancer started to grow again, he would initiate other treatments.  He stated mom needed to recuperate from the chemo and he felt the risks of radiation (i,e., damage to heart and lungs) outweighed the benefits at this time.  I feel a little blind-sited.  I guess I thought once you started fighting cancer, you continued to try different options to get rid of the cancer.  I was surprised by the "watch and wait" approach now that treatment had already been initiated.   Her doctor is reknowned Thymoma specialist, Dr. Patrick Loehrer, of IU Med Center in Inpls, IN.  I am sure he know what he is doing, but it always seems as if we are not getting all the true info.  We are unsure what her prognosis is as we have been told since Thymoma is usually an extremely slow-growing cancer, people can live several years with treatment even if it is not cured.  I would be interested in hearing anyone else's experience with this disease.  Thanks.

Shellybean

 

RE: Thymoma

by Witchdoctor on Mon Apr 30, 2007 12:00 AM

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Your mother needs irradiation and this should have  been done upfront.

Expert IN DEED!

Chemo is NOT first line therapy for these tumors, it is surgery, irradiation or both.  Chemo may be given as part of a study.

RE: Thymoma

by Shellybean on Mon Apr 30, 2007 12:00 AM

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Hi,  Thank you for responding to my question on Thymoma.  Again, my mom was diagnosed with Stage 3, inoperable Type B-1 Thymoma in December of 2006.  Her cancer was inoperable as it had wrapped itself around the Vena Cava in the chest cavity.  Mom was referred to Dr. Patrick Loehrer of IU Med Center.  Again, we are told he is foremost in his field.  Since the cancer was inoperable, he initially recommended four rounds of combination Chemotherapy and then radiation if the spot was still inoperable.  Mom has now completed the four rounds of Chemo.  Her CAT scan last Monday showed the tumor has shrunk.  Dr. Loehrer is now going to have Cardio-Thoracic surgeon, Dr. Kenneth Kessler, of IU Med Center review mom's scan to see if he now feels he can operate.  We have an appointment with both Dr. Loehrer and Dr. Kessler on 5/23/07 to discuss options.  If it is now operable, they will operate.  If not, Dr. Loehrer stated he felt the risk of pre-operative radiation outweigh the benefits at this time.  He stated radiation could damage mom's heart and lungs.  I also feel he does not think mom is strong enough to withstand radiation as she had a very hard time with chemo being hospitalized after three of four treatments due to low white blood count.  If the tumor is inoperable, he stated he would order a CAT scan every three months to monitor and when/if the tumor started to grow again, "there were 6 to 7" other treatment options down the road.  We do not know what to do right now but to follow the Doctor's advice.  Do you know of any other Thymoma specialist in the nation where we could get a second opinion? Also, I would still like to hear from anyone out there with inoperable stage 3 or 4 Thymoma.  I would like to know what treatments others are receiving.  Thank you in advance for any response.  We appreciate all the info. we can get.  Also, just a note: my mom has never had any pain or symptom from the cancer inself besides being tired.  If all seems a bit strange.  Thanks.

Shellebean

RE: Thymoma

by Witchdoctor on Fri May 04, 2007 12:00 AM

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Geez!  Well surgery can kill you!  Using modern techniques the risks of irradiation to the mediastinum are almost nil.  Since it is in front of the esophagus you won''t even get an esophagitis.  Expert indeed again.

RE: Thymoma

by Shellybean on Thu May 17, 2007 12:00 AM

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In response to "witch doctor"....I am just curious as to what type of doctor you are.  Are you an expert in Thymoma? Where do you practice?  We meet with the Thoracic surgeon and oncology Thymoma specialist on 5/23/07, next Wednesday.  I will be sure to ask again about radiation and why specifically he is not pursuing it.  It is hard being the patient as you are at the mercy of your doctor.  It is hard to know where to turn and who to trust.  You almost feel like you have no options other than to follow the doctor's advice and hope they are right.  It is a very helpless feeling.  Actually, since this whole process started, I have no faith left in healthcare professionals.  You are rushed in and rushed out and God forbid how you are treated when you are hospitalized.  If it be God's will, things will work out in the end.  Shellybean

RE: Thymoma

by John827 on Sun May 27, 2007 12:00 AM

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Just to let you know the proposed treatment by your mothers oncologist appears to be following common procedure for this very rare type of cancer. There is no real write or wrong and it all depends on the type of cancer, location and size. As a rule ifthe cancer is of a size and located such that it can be surgically removed, then that would be the first option. If not every effort needs to be made to shrink the tumour so as to get it to a point that it can be removed. Radio therapy should preferably occur after surgery for a couple of reasons; one being that it is not effective on very large masses and secondly it creates scar tissues in and around the area be radiated. This then makes the surgery considerably for difficult as they are have to cut and deal with scar tissue, which is not desirable. Either way for a thymoma that is progressed or, as was in my case a thymic carcinoma, which is extemely agressive and even rarer, an agressive multinodal approach is recommended. (chemotherapy, surgery and radiotherapy) the exact order being dependant upon the size and location of the tumour itself.

In my case the tumour was deemed in oerable so I had a very agressive round of chemotherapy, which successfully reduced it in size so that it could be operated on, this was followed by 6 weeks of radio therapy to mop up any remaining microscopic cell and reduce the chances of reoccurrance. If it can be surgically removedin its entirity, then chance of survival a very much increased. All in all, surgery was probably the easiest, although painfull recovery was pretty quick, compared to the chemo and radiotherapy, although not painful, was also OK. As to what the long term effects maybe, only time will tell.

At the end of the day, you need to consult your specialists, gather as much information as you can, even get second opinions and then make an informed and educated decision as to which approach is best for you. And try not to take what is said by so called "doctors" in these forums as being factual, as everyones case is different.

 All the very best.

RE: Thymoma

by Hope_Please on Tue Jul 31, 2007 12:00 AM

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Just a quick thanks to John827 for his response.  We hope you are doing well after your procedures and we will keep you in our prayers.  We know 1st hand what a rollercoaster ride thymoma and it's treatment is. 

As to the "Witch Doctor", I find it interesting that you never wrote back to tell us what your "expertise" is.  My family did extensive research of the various treatments for thymoma and everything led us back to Dr. Loehrer.  He has more experience with this type of cancer than most other doctors in the entire country.  He is one of the best in his field, so yes, he is INDEED an expert.  We would highly recommend him and his team of experts at the IU Medical Center to anyone else who is diagnosed with Thymoma. 

As far as Shellybean's mom (also my mom) she had her surgery back at the beginning of June.  It was an extremely invasive procedure as the thymoma had grown to several arteries (all which had to be replaced), her nerve to her vocal cords, and the top of her right lung, just to mention some of it.  Dr. Kessler at IU's Cancer Pavilion did a terrific job.  He is kind and caring and an expert in his field.   We are all very thankful to have him taking care of her.  Though the surgery was intense, we feel my mom got the best possible care from her team of surgeons.  She is currently still recovering from the surgery and will be undergoing 5 weeks of 5 days a week radiation therapy after she recovers fully from her surgery.  Does anyone have any advice as to what to expect from radiation?  Chemotherapy was so rough on her, she was in the hospital after every treatment (except one) because her white and red blood cell count crashed.  We are praying that radiation therapy goes easy, or at least much easier than everything else she has been through.  Any information or advice as to what to expect will be greatly appreciated.

RE: Thymoma

by Whobaby on Fri Aug 17, 2007 12:00 AM

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Hi, My father was diagnosed with thymoma over a year ago and it has been a tough journey for him and my family. His thymoma is very very rare. He went it for surgery and they found that it was completely inoperable. His tumor is rock hard, not soft tissue. They had to get a chisel to collect a sample of the tumor. His cancer has branched out from the thymus and has wrapped around many vital organs (heart, lungs, aorta, ect.). After learning that surgery was not an option, they continued his treatment with radiation. He did radiation for 36 sessions at the highest possible level of radiation. He went everyday except for the weekends. It was very hard on him physically. He can no longer go in the sun without a shirt or risk skin cancer, he also has a hard time catching his breathe because part of his lung was destroyed during treatment. With that said, the results of treatment are better than we ever expected. His tumor has shrank and has not grown any larger. The cancer will always be there, and he takes pain medication everyday for it, but the radiologist recently informed my father that he should "start planning for the rest of his life." This cancer is not easy to deal with, but survival is possible.

RE: Thymoma

by SybleWright on Tue Jul 08, 2008 12:00 AM

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Hi everyone,

  I am new to this website. But am glad I found it. I am wondering if anyone has a recurrence of thymoma cancer?? My husband was diagnosed with it a little over a year ago. We had chemo treatments and then had surgery to remove it. We did have Dr.Kesler and also Dr, Loehrer from Indiana. I cant say enough good things about these 2 dr's. I found them because I found they were the best in this type of cancer. I still feel the same way and still will travel from western Ny to Indiana to have them care for my husband.

 We have been having follow up appointments and this time they found 2 small spots. Were now waiting for the biopsy report. As you all know the waiting game is hard.

My email is

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Thank You

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