Treatment after Thymoma resection

Hi

I had excision - vats removal of thymoma in March - not to sure of all these medical terms - so after googling the vest thing - I think perhaps you had a different procedure than me - but to deal with the same problem - hence you have the thrilling vest!!!.  

It was six weeks before I saw the oncologist after surgery, but in the meantime the surgeon had told me that the 'mass' was a thymoma and I would need followup radiotherapy.  When I saw the oncologist - so she could plan my radiotherapy - the biopsy results were through - and it takes some time - she was then able to tell me what type of thymoma it was and at what stage.  Macmillan advised me to look at the following site - as they didn't have a lot of information about thymoma, cos its so rare.

www.oncolink.org/.../all-about-thymoma-thymic-carcinoma

I too have several other autoimmune conditions.  Never rains but it pours :-)

You will get through it as I did.

I'm four years post thymoma and living life to the full.

Thanks for this, I'll have a look at the link.  Is is true that we get no Macmillan support at all due to the rarity of our tumours?  I hope not, I'm getting my head shaved for them in October!

Hi ,

Of course Macmillan support patients with any type of cancer.

We have some information on our website about thymus cancer you might to look at, and of course this group is there for you to connect with other thymus cancer patients.

That's amazing that you are doing brave the shave in October - thank you on behalf of Macmillan. We'd love to know how you get on :)

You're very welcome to call our support line and speak to our nurses about anything you are worried about. Our number is 0808 808 00 00, Mon-Fri, 9-8.

Best wishes,

Jess

Thanks Jess, after reading a few posts I was left feeling a bit unsure about support when my Husband and I needed it so I'm grateful for the reassurance.  

Macmillan were there for a family member last year and were wonderful, in fact they really helped get her through it so it's really for the hard work you do for people like her, that I wanted to contribute (it wasn't just about me despite the way it looks).

Thank you.

Hello,

I'm really glad to hear that you found Macmillan helpful for a family member and I hope you'll find the Online Community helpful too. We're here for you, and your husband too.

We also have Ask a Nurse on our site if you have any medical questions, and you can always contact us at community@macmillan.org.uk if you have any questions about the site, or Macmillan in general.

Best wishes,

Jess

Hi D,

Read all that and printed it out .7pages. You so quiet So sorry if you are poorly! Did you see my epistle about having a T Shirt made with I AM ONE IN A MILLION......Just trying to be humourus(?)  CAnnot find a clever needllworker round here. MUst be soemwhere. RT  no 6 today, thurs and no7 friday thena break for 3 days then 4 next and 4 the next week. 15 altogether. Then wait and see if the lump has gone, I suppose. THen  what? I wonder. Feeling sooo tired andlethargic after just 5 doses. Still cannot lay flat! Catches my breath! Half a Lorazepam to realax before laying down. I am such a Wimp

Hey there. I had a thymic carcinoid in my chest of about 10 centimeters removed 8 years ago when I was 42 (male). It invaded my left lung and lymph nodes and diaphragm. I went to Sloan Kettering after the resection of my lung and removal of tumor which was about 4 hours in open heart style.

Dr Greg Reilly treated me there, and continues to do so. I received significant radiation and chemo in the form of Cisplatin and Etoposide. 5.5 years later recurrence in pleura. I then had a thoracotomy to remove some disease. 1 year after that I had pinpoint gamma knife radiation to remove one spot they felt was missed and was recurring. 4 pinpoint treatments later spot was dead. 

For the last year, I regularly go into a dry sauna for 30 full minutes at 200 degrees 3 times a week and give myself hyperthermia treatmeats. I also use a 300 watt ceramic near/mid infrared aimed at my lung 2 times per week for 20 minutes to raise the temperature around the cancer cells.

The difference in the tiny spots they were concerned about about 9 months ago and now (meaning last week 8/22) now in my lung from is basically unchanged. I do not know if the hyperthermia is working on the cells and weakening them or not, but I am not stopping it. Best of luck to you. Send a note anytime.

Loving the t-shirt idea.  you could use fabric paints if embroiderers are not in abundance.  I used to run my own t-shirt printing business back in the day so I might give it a go but with the one in 1.5 million quote, which is apparently more accurate.

You're an inspiration.