First of all,if the experts are absolutely sure it is a thymoma, your father should have it removed,because he will not know whether it is benign or not until a biopsy is carried.

I had a thymectomy 13 months ago, at 63 years of age. To date I have not perceived a miraculous difference in my condition, I am taking Pred at 9mg, Mestinon,and Cellcept.

I was told that I had a thymoma which had shrunk in size over a fifteen month period, to 6mm diameter. The subsequent biopsy concluded it was fatty tissue.

I am telling you my experiences, with a view to making the right decision and thus ask the right questions. It is very daunting for your dad and family when first diagnosed.

I hope and pray for your dad.

One question for you......Has your father ever been prescribed and taken Statins?

BTW my procedure was by key hole

Regards from UK

Throstle53

I agree that if it is a thymoma (cancer) of the thymus it should be removed if your dad is reasonably healthy. Ask about the minimally invasive thymectomy. https://my.clevelandclinic.org/health/articles/thymectomy-for-myasthenia-gravis/procedures
Good luck
Russ

I am 65 and have a 6mm thymoma. I have been monitoring it with CT scans every 6 months for 2 years. The last one in July my Dr. said I don't need to have another CT scan for 2 years. I am glad I didn't have to come to the decision to remove it because I won't and that might have caused problems for my wife an Doctors. Any surgery is risky, you have to consider your fathers health and what the effect will be. There is a possibility he won't have any reduction in his symptoms, still have to take all the medications anyway and could worsen. You way this against the small chance he might get better. Why not just monitor it for a while?

Hi Throstle53, Russ and Blinkngone,
Thank you all for your replies, it is good to get feedback from all of you and your various experiences.
Throstles53: Yes they are sure it is a Thymoma and I think it is quite big (forgotten the exact size). They have mentioned statins before but also mentioned many of the options to treat MG (plasma, IVIG, statins, mestinon etc). They also wanted to initially do a biopsy before they new it was MG, then to confirm it was a Thymoma but he refused to do one, he felt poking around could make things worse (his view). But I believe now they have already scheduled surgery to remove the Thymoma and he is not sure he wants it. I will get him to ask all the questions everyone has mentioned above.

Russ: I will get my dad to check if they can do the minimally invasive procedure and have sent him an email with all the recommendations above. I am worried if the Thymoma is quite big they may not be able to do the less invasive option, but at least he knows what to ask now.

Blinkngone: I am guessing my dads Thymoma is much bigger so perhaps they dare not leave it too long, although I think he would rather monitor the growth every 6 months with a CT scan. He is also trying a more herbal natural approach to try to shrink it and apparently the last CT scan the other day showed it was a bit smaller, although the doctor did not really comment saying it could be a different angle. My biggest concern is that there wont be any reduction in his symptons after putting him through a stressful surgery (minimally invasive or otherwise) and then after all of that there are no signs of improvements or possibly in years to come. At 78 I think he would rather take his chances and manage it with medication. Does it make a difference if you leave the Thymoma and decide to remove it years later, or is this something that is best to be done earlier at first onset of MG ?

Thanks again to all who have replied.

All the best, Nem123

Hi Nem123, sorry you are having to deal with these difficult decisions. I just don't know. It sounds as though your current Dr. is not treating it as a dire emergency yet. I don't see why it wouldn't be a benefit to get another opinion. If the second Dr. thinks it requires emergency surgery then you have another difficult decision to make. I guess you have already "googled" the several types and 5 year survival rates for the 4 stages. My Dr.'s don't seem to have a problem with the wait/monitor then remove option, this would make your dad happy as well. They seem to feel as long as it isn't increasing it's ok. I guess the size is the determining factor but different Dr's may have different criteria on what size requires immediate removal.

Hi Blinkngone, thank you for your reply above. I have not read about the 5 year survival rates for the 4 stages, will read up now.
I think the doc wants to get it out asap as tried last month when my dad was in hospital , but it was so much to absorb so my dad wanted to think about things once he got home.
Initially in March when they did a CT scan they found a mass which was 11.4 cm and they did not know what it was. But now know it is the thymoma as he had many other symptoms since then. However, his recent CT scan shows it at 9.6 cm which is smaller. But as this doc did not do the original CT scan he does not seem interested in the reduction in size saying the angle could be different? I don't get that as I thought a CT is a CT and would capture the same views.
My dad had been following a more natural route through diet and supplements and feels this may have helped reduce the size of the thymoma.
I know his thymoma is still pretty large but he wants to choose quality of life over such a big surgery with no guarantee of improvement.
Lots to think about but I think a second opinion would be good.
Thanks again for your help.
Nem123

The thymus is of a pinkish-gray color, soft, and lobulated on its surfaces. At birth it is about 5 cm in length, 4 cm in breadth, and about 6 mm in thickness. The organ enlarges during childhood, and atrophies at puberty.

Your Dr. possibly meant mm, there are lots of pathological Thymus size studies and I can't find any
95 mm(9.5 cm). If it's really that big it must have a large growth on it. I guess that is possible, even more important for a second opinion now.

Take care Nem123
Carl

Hi Carl,
Thanks for your message above. In the most recent CT of the thorax a soft tissue mass is seen in the anterior mediastinum which is 9.2 x 6.4 cm (previously 11.6 cm). It has also mentioned differentials include thymoma and less likely teratoma. So I presume this is a mass on the thymus hence the reason to remove it as it is very large and my error thinking it was the thymus that is big, obviously the growth on the thymus which is causing the MG.

I wanted to ask if anyone has heard anything about this Dr Moshe Daniel Block, as after doing some research his name pops up as dealing with auto immune diseases holistically. Whilst he mentions case studies and cures with holistic counselling. The skeptic in me is asking lots of questions, but at the same time if dad wants to go the more natural route, it may compliment what he is already doing ? Any views on this Dr Moshe ?

Did anyone else feel the onset of MG was stress related ? Also, how long can someone be on Mestinon as I know it is not recommended long term, is that 1 year, 2-5 years ?

Sorry for all my questions, I do have a lot and it is lovely to read all the posts and comments on this website for plenty of real life info.

All the best, Nem

Hi Nem, keep getting kicked by sever. No worries about the Mestinon, plenty of history as a treatment.

Carl

Hi Nem, In case you don't have this information.

https://emedicine.medscape.com/article/1171206-treatment#d9

Take care,
Carl

Thanks Carl I did not have that info. Nem

Hi Nem123,

Im sorry you and your Dad are dealing with this, I just wanted to share my experience with you, I had a thymoma about the size of your Dad’s and had
a non-invasive thymectomy done about 1 year ago.
I am doing much better as far a symptoms now and I’m only on imuran and mestinon as needed.
My doctors all thought it must come out no matter what but I am younger (50) than your dad.

Hi Lynn52266,
thanks for your feedback above with regards to removing your thymoma. How was the recovery process for the non invasive thymectomy ? Good to hear you are doing much better after doing it.
Nem123

Hi Nem123
The recovery was pretty easy for me.
I didn’t even need much pain meds after. The surgery was a breeze compared to just dealing with the MG symptoms which seemed to get worse after surgery for a few months . But then when the treatment started working (prednisone) I got gradually better..
How is your Dad doing now?

Hi Lynn52266,
Apologies for the late reply.
Thanks a lot for the info with regards your surgery, I will share this with him.
Dad seems to have improved quite a lot, eating quite well and is out and about every day doing his usual stuff (he still works) as I think he would rather keep busy.
He seems to have his mestinon dose working much better and has gained some weight and also some muscle tone. Greatly improved from August.
I Guess we just monitor him and do follow ups on the Thymoma every 2-3 months with a CT scan, although dad said he rather not have them.
Thanks again for everyone's input and sound advice.