Lulu, thanks for taking the time to write such a long and in depth post. This gives us a much better picture of your timeline.

You sound young, if you dont mind me asking you age? Being young is good! It means you are stronger and can fight this better than someone say in their 60s or 70s (sorry Jim).

Your English is perfectly understandable! So do not feel any hesitation to write because of lack of understanding. Italy!!! Ive been to your wonderful country! I love it!!! Of course I saw many tourist places like the Spanish Steps (full of flowers), the ruins, Trevi Fountain, the canals of Venice and the Square and church on the main island of Venice(sorry forget the names). Oh how I wish I could go back in time to that trip!!! I was much younger and in good health. One thing I dont like is your explanation of the health care in Italy. It sounds like it is terrible to navigate when you have a serious problem. I much prefer the US where my family physician is who first told me I may have cancer. But, I am one of the few lucky patients who was diagnosed very early. This disease is a sneaky one and many times the symptoms hide and do not present themselves until a patient is very ill (Stage IV). There have only been very few Italians on this forum, and unfortunately none for a long time. So unfortunately we do not know about what places you would get the best care. There may be some members from the UK and France who have a general idea but those members havent been on in a while.

I hope your test results show something, of course we do not want it to be cancer. But you do need to get to the bottom of this and know what is going on. Its been a very long time to have this issue and not find the source of your problems. Please let us know the outcome. Even though we are not local to you, we can still help you if it turns out to be cancer. At least we can point you in the right direction. Are there larger cancer facilities in Rome? That could be your next step if the current doctors do not help you. Oh yeah, almost forgot! This should help you feel better... I havent ever seen a false negative on a PET scan before. PET scans tend to light up for inflammation which is what makes them have the false positives. Best wishes!

Hi everybody. Really guessing if luck is by my side: either I am the luckiest, or the silly girl who gets the worse DRs ever.
Only time will tell.
Not good at cutting a long story short - I think you might have felt so, then pls enjoy the act nr 1.000 of the story below.

Puzzled about MRI results: despite clear request, the General Doctor listed body parts that apparently have little to do with the suspected areas (tonsil and retronolar trigon are the bleeding and aching spots, while MRI dealt w/brain, troncus encefalus and facial maxil - just guessing the Eng words for the original request).
The MRI w/contrast is negative! Still, I cannot go out and party folks, and not just 'cause I'm exhausted, but mainly 'cause I do not know if the technicians and doctore were able to look at the right body parts. Ah!
Isn't this a story of MALPRACTICE? Is it just a feeling, or this is just me going out of my mind and acting like a drama queen?
I'd stay for the latter 'cause I love life.
Sat here so I'll wait until Mon and refer to a specialist for a clarification on the above.
Maybe, I am hoping, the machine could pick up the oral cavity as well by default: to my ignorant eyes the films do show tongu, upper and lower teeth chain, still no images for the submandibular 1 CM linph as of course, neck wasn't just listed!

At this stage I think I'll try and see my dentist again so I'll have both a 3rd opinion on the overall, plus furthe hygiene should anything come out, and a consultation on the anathomy of mouth.

The silly thing is thet the social service is paying for the MRI, which is not a cheap test of course, plus I had my 4th contrast and still no clear vision on my state.

That's even becoming funny at this stage, if not ridiculous, then please feel free to laugh with me: I won't get offended and I invite you to join the audience of this little theatre.

I sometimes wonder if that's the price for being Italian.

Just thought you might want to share the update.

I remain, wishing you the best week-ends full of love, hope, and pleasure.

Hi Christine, thanks for checking in again, I was so upset when I came back yesterday from the medical center that I even missed your post! Sorry for this.

I am glad to know you had such a trip in Italy, and wow, you visited the main spots, even places an Italian person might not see for an entire life. My favourite tourist city is Venice, I love the funny way they live with all this water, you see unexpected solutions and people there are soooo elegant!

I've been in the States, but only NYC, twice for pleasures and once for my work, and I also hold very good memories, especially the vibe and Central Park, but I confess that what fascinates me most of the US is the fact that you have so many different places within the same country, that you can travel from a timezone to another, through different climates, and people live in so many different ways.
I was just guessing yesterday with a friend if Americans also have all the silly yet sometimes funny stereotypes we do on being habitant of a certain area. I am sure you do.

I am from Milan, and we are said to be hard workers, yet quite distant people. This has some true indeed. Our city is not as spectacular as Rome, not even comparable I'd say, as it's more about little hidden secrets, small secreted streets and little spots to be found by chance, but as a citizen it's quite liveable, as there seems to be room for everybody, good schools and good restaurants. And there used to be a lot of work as well.

And I am 29 y.o., but if you ever happened to see me, you'd rather guess 18. People still asked me for my age at the disco the last times I went, and many dount my real age also at work. For a girl, well a woman that's not too bad sometimes. This must be because I am petite and have good genes - at the beginning my grandma was even thought to be the mother of her grandsons and daughters too!

You might have read about my MRI. So many wrong tracks, and the whole thing for nothing. I am so disappointed and feel so in the lap of the gods. I just guess this all reads crazy.

Thanks so much for your sincere whishes, I do appreciate and keep them in mind until I check again if the images are to be considered valid for their purpose. You always keep an eye on the positive side!

Sending all the best to the community, and well, I hope this Sunday is a source of energy and relax for those who fight their big and little battles every day and for those who take care of their less lucky dear ones.

And the square you mentione in venice is San Marco. Each and every year, when Carnival begins, a young lady goes down from the bell tower like an angel, wearing an often quite spectacular dressing gown. It's a popular feast, and a very eye-catching party. Everybody dresses with superb eye-masks, no matter the age, and the whole sity is in a state of ferment. It's very crowded of course, but it is always worth a visit for the stunning colors and masks, so close to the overall sentiment of decaying beauty of this city.

Hi Lulu,
I see now you are in Italy. Food there, especially in the north is marvelous also. I've been to your lovely city and enjoyed it a great deal. I am so sorry your doctors can't seem to figure out what is causing your problems. It must be so frustrating.

Take care,
Eileen

Lulu... I know you have been through a battery of tests... I'm sorry if none of them have given you any information on what is going on...

I do have to say - this all started with pain, bleeding, and drastic weight loss... That to me is not a good sign...

You know your body - you know if something is wrong. Find another dr. Someone who will listen.

Don't give up until you get answers.

I had my tongue issue for 4-5 years - the tumor was there when a biopsy was done 2.5 years ago my biopsy came back negative - the ENT guy took the tissue from the wrong place. My neck CT and MRI came back negative when I had one lymph node involved... The results are only as good as the dr. reading them. The pain is causing problems with your life, the weight loss is not normal - unless you are actively trying to lose it. Keep asking questions, seek out another opinion... You know if there is a problem.

Good luck - I wish I knew what was a good hospital in Italy - sorry I can't help with that.

Take care.

Hi Eileen, I answered in the EU topic, thanks for checking in. Food is fantastic here, not my major pleasure now, but I hope appetite will knock at my door again

Cheryl, thank you very much as well. I appreciate the honesty of your words, as you say none but the single person knows if sth is wrong with him/herself and, to answer your question, no unfortunately I am not actively trying to loose weight, and moreover I am petite by nature, which scares me even more.
None has been able to give me any precise proof of all these symptoms so far, they just keep on saying this is stress, but the small bleeding factor does not reassure me at all, especially when they talk about little blood vessels breaking in my mouth (I was a regular nose-bleeder in my childhood and can very easily distinguish a massive bleeding due to a little vein from the scarce, yet continuous bleeding I have been suffering from my mouth for months now). Still, my reasoning that is dictated by experience does not seem to impress doctors.

I had an MRI last week, as you might have seen from my previous posts, but God only knows why this did not include the neck. It was done on my mouth, but how to explain this, it was just taken on the face from head to mouth - it shows my lower theeth as you can see them in the mirror, full stop.
I trust the DR who read them, but the point is that the exam was directed to a minor part, therefore (in my opinion) was not complete.
They did see the tonsils, and one looks slightly bigger than the other, obviously the one that is aching. Radiologists say this is not pathological, i.e. takes no enhancement after contrast, that it just looks slightly different and that I should not worry and get back to a normal life.
Well, normal life when you need 14 hrs sleep a day plus a nap in the afternoon, you feel no hunger and you moderately bleed every day from your mouth sounds a bit pretentious if you allow me the idea.

Cheryl, will read your story (I already did before you posted but need to refresh as I've been around the website and my mind is pretty full now). I know none of us is a DR here and each story is different, but would you mind - if that is not too personal, describing me the bleeding size and frequency? Should you find my question is too direct, I beg your pardon, but if you feel like, pls PM me. Having some evidence would give me more strenghth with the ENT, that I am scheduled to see on Fry, 12.30 local time (which means in about 30 hrs).

I appreciate your support, and please take care.

PS: you do not have to worry about the hospitals, we have the 2 major cancer centers here; funny enough, I tested one for the ENT, the visit was quite superficial and endoscopy came back negative; now I am afraid I will have to test the 2nd one.

Hi... Okay I didn't have any bleeding with my tumor, until after they did a biopsy, then it was tender and sore and would bleed occasionally. But I can tell you that bleeding from your mouth and a lot of weight loss is not normal. Especially If you are not trying to lose it.

If you are bleeding a lot, that would very much explain why you are so tired, if you are not eating properly, or a lot then that would help explain continuing weight loss and also cause chronic fatigue, however - your initial complaints were bleeding and weight loss, and I repeat that is not normal.

Have they actually done a visual examination of your throat with a scope? My dr.s all stuck a tube through my nose, and examined my through, nose, airway, and tongue.

MRIs are great but they don't catch everything. My advice is to go to a totally different ENT guy preferably one at the cancer hospital, and tell him your symptoms, and see what he says. Don't stop until you get an answer.

Best of luck and hope you feel better and get answers soon.

Hi Cheryl, thanks so much for your detailed feed-back: it's mostly appreciated here. Am in the waiting room now to see General Dr, then ENT (a cancer surgeon) in 3 hrs today, plus Hospital later in the afternoon. Sounds like a tough check-up. In answer to your questions, yes, they did scope my moutn woth videoscope entering from nose and going down to vocal cords. This happened about 4 times within a year, but not all ENTs were familiar with the big C. They all reported generic redness/inflammation, which they attributed to reflux, plus slightly augmented areas around my rx tonsil. I assume I'll hopefully get some answer and according to your point of view, will make sure to properly point out accidental weight loss as well as moderate yet continuos bleeding plus the bad feeling in my dx mouth and ear.
Food-wise, I am desperately trying to keep a regular diet, including alternative protides and trying to carefully monitor quantities. The bleeding is not massive therefore has not led to an iron consumption so far, luckily (I guess I'd feel even weaker should this ever happen).
I shall keep you posted.
Thanks for being here and again thanks so much for your comprehensive answer on such a personal topic.
May you all enjoy the week-end and have time to spend doing your favorite things and staying with your beloved friends and family.
Take care and keep on being close.
I hope I can also be of some help once this issue gets more clear.

Quick update: ENT says to go back in 6 months for an extra neck ultra-sound and endoscopy. Says just for safety.
Bleeding frequency changes were not motivated at all, while for the frequent sore throat (monolateral) he said this happens. The whole story sounds slightly unclear: the blood vessels theory does not match with the small bleeding quantity + everchanging frequency. Will definitely head to the 2nd cancer center here, make uo an appointment soonest. Was even given a side CFS diagnosis, which won't explain the weight loss and appetite changes at all. I do feel DRs here have problems in dealing w/scared + young patient seeking for torough explaination to her symptoms. Rather frustrating and scary.
All the best to you all, and unhappy to say this, story to be continued.