Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

The Rarest form of Mesothelioma

TheRareOne
Posted by

In February this year, during a routine operation to remove a hydrocele, i was diagnosed with the rarest form of mesothelioma, mesothelioma of the tunica vaginalis, the mesothelial lining surrounding the testicles. To my understanding, i am one of less than 200 people diagnosed with this rare form globally since 1957. I am only 43 years old.

Fortunately it was purely a chance discovery and the staging appears to be 1a. I have undergone bi-lateral orchiectomy with complete scrotal excision. I have also had scrotal reconstruction done using bilateral medial thigh flaps. The pathology only showed left testicle was affected with no invasion into the testicular tissue, so just on surface of the tunica vaginalis. Also no spread into surrounding scrotal tissue or spermatic cord. tumor margins were well clear.

My last CT scan (2 months after surgery) is clear with no sign of metastases in abdomen or lungs. My oncologist and his colleagues do not recommend chemotherapy at this time, they recommend a monitor and see approach. But they said if i want to go down the chemotherapy path i can do so.

The recommended approach in my case is based on plural form of mesothelioma, this means CT scans every 3 months for the next 2 years, then 6 monthly in years 3 and 4 and once in year 5. if no re-occurrence of the cancer they will consider me in remission. and after 5 year i will have to have yearly full body X-ray or MRI scans to watch out for any new primary tumor growth.

My question is, should I go down the chemotherapy path with Cisplatin and Pemetrex and possibly Evastin. Or accept the oncologist wait and see approach? Since chemo needs to commence within 12 weeks of my surgery i have 4 weeks to decide if i wish to start chemotherapy.

Thoughts, suggestions??

Ems W
Posted by

Hi RareOne,

Firstly very sorry to hear of your diagnosis and hope you're recovering well from surgery.

I really don't know much about this particular form of meso but from what I have read (including clinical papers) there is not enough data to support the role of chemo and/or radio. Though radio is considered for locally advanced MM following tumour resection. And when diagnosed at an early stage it's often deemed 'not necessary' to undertake chemo, and when it hasn't spread.

I would probably accept the watch and wait as chemo itself is pretty horrid BUT this has to be your choice. Good to reach out and chat to people, friends and family and read (but not too much - you can drive yourself mad), but you have to choose what you believe to be right for you.

Wishing you well and good you joined this group. I always found it really helpful.

Take care.

GerryC
Posted by

Hi, 

Sorry to hear of your diagnosis and hope you are recovering well from the operations. As a fellow sufferer of Meso but of the plural type, I know the worry this causes and how we all want to do the 'BEST THING'.  My only useful contribution is; are you sure you are with a medical team that fully (as far as possible) understand this disease?  If so, great.  If not, I personally would get transferred to centre that can fully support you.

Best of luck, keep healthy.

GerryC

mombi
Posted by

Hi rareone

My husband has been diagnosed with peritoneal meso, another unusual one. with the main tumor behind the belly button. It has spread too far to operate at the moment. We are under the care of a first rate oncologist...but even so, we are pursuing a second opinion at a centre where peritoneal malignancies are a speciality. We have started the chemo..one down and 5 to go. I did a lot of reading through Dr Google, and you are correct..it is enough to drive you down every alleyway and potentially into the asylum! It is definitely worth a second opinion, although as you are lucky enough that it has been caught early, the wait and see approach seems to be an accepted course of action. One of the hardest aspects of all the diagnosis phase is the waiting...waiting for appointments, waiting for results, waiting for more tests. It is emotionally the hardest thing I have ever done.

Good luck with the on-going monitoring, or the chemo, whichever course you decide to take. 

Chezdouglas
Posted by

Hello 

My husband has been diagnosed with Peritoneal and Pleural Meso which we have been told is very rare, with not many options they could not operate and he could not have radiotherapy.

My husband had 6 rounds of chemo which showed a reduction in  the nodules in his lung and stomach. After 3 months at his routline CT scan showed the nodules in the lung had grown but stayed the same in the stomach.

Our oncologist put him  forward for the Promise Trial at Guys Hospital and was chosen for the Immunotherapy side of the trial, he is due to have his second dose on the 18th, we are hoping for a good outcome.

With him being on a trial they monitor him more closely they phoned him 3 times in the first week to see how he was going.

I wish you all the best as you have  a hard decision to make, 

Good luck 

Cheryl

mombi
Posted by

Hi Cheryl

Good luck with the immuno trials. Unfortunately we missed the cut off date for the trials by 6 weeks.I really hope it shows good results. I understand that this is a phase 2 trial, so they know that the results are promising.

I would love to know how you get on.

Fingers crossed for you .

Chezdouglas
Posted by

Hi Monbi

I am sorry to hear you missed the trial by such a short period, we were so lucky to have met the criteria and made the cut off date. We were very lucky to have a meso nurse who was wonderful and put my husbands name forward for the trial.


I will definitely keep you updated with how my husband is reacting to the Immunotherapy.. I will send you a private message after his next treatment



Take care and I hope all goes well for your husband .. I have read that having peritoneal is easier to treat than Pleural Meso.

Take care


Cheryl x


tmoorecs
Posted by

HI I wonder if you can help me and my dad  went to the royal marsden yesterday  with hope to start the promise trial 

dad has mesothelioma they talked about the promise trial

t then another nurse came in and said it was closed feeling very confused x

mombi
Posted by

Hi There

We had our 2nd dose of chemo yesterday, saw the consultant the day before.

I think that the trials in the pipeline/under way at the moment are for recurring symptoms after the initial chemo. Not sure if they are recruiting yet or not, or if they have started. I know we missed the last open immunotrial that we may have qualified for.

There are listings of open trails on cancer research UK I think, and in other places.

Might be worth going straight back to your oncologist and asking directly.

Good luck, and fingers crossed.

Zanulli
Posted by

Hi there I hope your recovery is going well. I also have been diagnosed with the same. I had a hydrocele operation 31/12/2010 at the time my wife who was a nurse said it is just fluid nothing to worry about. Went to GP December 2017 to get checked over and was concerned about my testicle, eventually had an orchiectomy May 2018 and after the operation was advised that it was an unusual case and was referred onto oncologist. Straight away she suggested I went for chemo and my case was referred to the Royal Marsden. As my case took a while to review as the papers got lost I started on a course of 4 sessions of chemo. After that my consultant had heard back from the Royal Marsden and I went up there for a further operation. The testicle cord was reduced and left side of scrotum removed. All the action after the first operation was just precautionary. After my last visit to my oncologist we decided upon an annual review.

Everyone dealing with my case just seems to scratch their heads and offer their best advice. Now after the chemo just seem to be constantly tired but I am still alive. Hope things are well with yourself and you are ale to get on with your life. Have read so many items over the internet and a lot of information is very vague so I am not really sure what will happen with the future or what to expect.