Hi, there. I've been lurking for awhile, but this is my first post. Like Lynn, I had my little lump in my palate since 2007 and was told by oral surgeons that it was nothing to worry about. In November 2013, my dentist noticed a change in the lump and referred me to a different oral surgeon who did a biopsy on 12/5/13. Diagnosis came back PLGA and I was referred to an ENT at the University of PA Hospital. A CT scan revealed that my tumor was 1.8 x 2.1 x 2.3 cm in the midline/left hard palate, with bone extension. Nasal septum intact. Paranasal sinuses and mastoid air cells clear. No perineural spread found. Surgery was performed on 12/31/13 (Happy New Year to me, huh?) I lost over half of my hard palate, left maxillary bone and 5 teeth, but all surgical margins were clean and there was no evidence of perineural invasion per the pathology report. What bothered me was that the pathologist said lympho-vascular invasion was "suspicious."

I had a lengthy conversation with my surgeon, explained all the reasons that I was not going to consider radiation just because it was "standard protocol." The U of PA board meets every week to go over all H&N cases and he said he would discuss my case and get their opinions, but that he was not inclined to push me into radiotherapy. And, to date at my follow up visits, he has not.

My question to all of you is have any of you PLGA folks gotten a pathology report that said "lympho-vascular invasion suspicious" and, if so, what did you do? IMO, jumping into radiation on one pathologist's suspicion, without definitive proof, is overkill, given the life long, often severe side effects of radiation.

I also have an interim obturator, actually am in the process of getting the permanent one, so I would have a very big problem with radiation causing trismus and destruction of my teeth. I have to be able to open my mouth pretty wide to remove, clean and replace the obturator and without teeth I would not be able to retain it.

I am almost 67 years old and, at this point in my life, even if I am found to have cancer in my lymph nodes at some point, I cannot justify going through what so many of you have gone through to add a few years to my life ~ years that IMO would hardly be worth living with all the radiation side effects. I am one of those people who believe quality of life is more important than how long one lives.

Doctors always seem to gloss over the severity of the side effects of treatments and do not give you the true picture. That one has to get from people who have been through it. I know I was not made aware of the fact that I will never speak the same again (nasal now) and the nasal regurgitation, the difficulty chewing because of the wires on the obturator clamped to my teeth, etc.

Any thoughts from you PLGA patients would be appreciated.

_______________________
12/31/13 Maxillectomy (left), palatoplasty hard palate, split thickness autograft
12/13/13 Surgical obturator placement
pT2
pNX
pM Not applicable

Welcome to OCF!

There are not many members who have the same illness as you so you may not get many replies besides some welcoming posts. There are a few members who have had a similar diagnosis. I did a quick search for PLGA and your thread is only the third one since 2010. Oral cancer can be a rare and unheard of disease but PLGA is even more of a rarity. The last stats I remember were 43,000 in the US are diagnosed with OC every year.

I understand about your reluctance to do radiation if its not necessary. This is something you, together with your medical team will need to decide upon. Radiation does not always cause trismus or tooth loss. There are many factors which go into developing those problems. If patients strictly adhere to using their flouride trays, brushing after every meal, flossing and overall top notch dental care they often do not suffer from very many issues with their teeth. Its a very individualized issue with much depending on the pretreatment condition of the patients teeth and overall health, age, etc. But of course anything can happen and many do develop problems even many years down the road.

My opinion differs from yours "I cannot justify going through what so many of you have gone through to add a few years to my life ~ years that IMO would hardly be worth living with all the radiation side effects." You are entitled to your opinion, just as everyone is. But I feel I must weigh in. I would much rather still be alive and deal with those after effects than not be here to share so many things with my family and friends. I have daily struggles but I am alive and thats what is most important. My family needs me as do the hundreds of oral cancer patients that contact me daily for info and advice. To me, the after effects were well worth prolonging my life for almost 5 years since my last round of OC. Any day I am about to become a grandmother for the first time. It would have been so difficult for my daughter to go thru her pregnancy without her mother. Im VERY happy to be alive even if it means Im not 100%.

Best wishes with your continued recovery from surgery.

Thank you for your quick response, ChristineB. I understand that many people would not agree with my opinion with regard to treatment after treatment after treatment. I have talked with people who have been through all the surgeries, radiation, recurrences, etc., albeit their oral cancers were not PLGA. As you said, PLGA is very rare, with no known causes (like tobacco or alcohol use) and because it's so rare, not enough studies have been done to give a good roadmap for treatment. So, even though it is quite different than other forms of OC, it seems that the protocols are the same. A few that I've talked with feel as you do ~ do whatever it takes. But a few have also admitted that if they had it to do all over again, they would not have pursued some of the more aggressive therapies because they suffered such severe side effects, even months or years later, and felt they paid a terribly high price for a few extra years.

My main concern is just the pathologist's comment that my cancer is "suspicious for lympho-vascular invasion." I'm thinking that since it wasn't a "black or white certainty" either way, she was just covering her backside by including a "suspicion." I just wondered if anyone else in this forum had ever had that kind of verbiage in a pathology report and how, if at all, it weighed in their decisions as to whether or not to have radiation. I guess no one on this forum can help me in that regard.

Hi SLL2,

I'll be 75 in May. I've had radiation three times (once was when the filled both lobes of my liver with SIRIspheres (tiny radioactive beads about 1/3 the diameter of a human hair.) That was completed on 24 November last year ('13.)

Most recently, (and while still softly glowing from the SIRIspheres) I had 3 weeks of the radiation you are speaking about. That's on top of the 8 weeks I had with the initial treatments back in Nov-Dec, '09.

I'll admit that it's no fun, but it's not the end of the world as we know it either, and while the effects linger (and even worsen) for a while after the radiation ends, in short order those effects run their course and cease.

So if it were me in your shoes, I wouldn't even hesitate to get the radiation; and oh by the way, I'm one of the incurables. All 5 of my recurrences have been "distant metastases," putting me in Stage IVc, a group with 100% mortality in 5 years.

But frankly, as scary as that sounds, it's only a statistical projection, and you know about lies, damn lies and statistics... Besides which, every one of us on this planet has a 100% mortality rate, cancer or not.

But you're a free agent and what ever you decide, I (and I suspect all of us here) support you and wish you the best of luck and outcomes!

Bart

SLL, I completely understand why you wrote the things you did. Everyone has a limit, that invisible line they have where they wont continue treatments.

I think the reason I felt I needed to comment on your point of view was I didnt always feel like the way I do now. When I was diagnosed with my third round of OC, I was ready to pack it in and finish out what good days I had left. I was quitting before I even gave fighting a chance. Because of the friends I had made on this forum and its founder Brian Hill, I sought treatment for my third round of OC. I had one of the worst years of my life with that third round but somehow I survived and then I began to thrive and make a new life for myself. My career, house and old life were a thing of the past and some days it was hard to get my priorities in order. But in time I accepted my new life was different but I still was the same person inside no matter what limitations my outer shell had. Now I am almost 5 years since that dark time and I am thankful for every single day I am alive and can share it with my family and friends.

I hope you never go thru the things I have. It sounds like you have been thru quite enough already. No matter what path you decide, we will help you as much as we can.

Im sure you will eventually hear from others who have a similar diagnosis. If you have specific obturator questions, there are several members with first hand knowledge of those appliances.

Best wishes!

Hello, SLL2,

I am not familiar with PLGA. In fact, I can't find any info about it. Can you be more specific?

Welcome to the forum. My husband is one of those who has had many setbacks and after effects from radiation. As bad as it has been, we have a very full life. There are a lot of things that are different now but we still enjoy being grandparents to three little ones, golfing, and the regular day to day stuff---movies, tv, being together. We share a lot of laughs, too.

I hear how tough it is for you and I empathize. No one knows what it is like unless one goes through it. Whatever course you decide to take, you are among good company here. For every person in this forum, there are that many opinions and experiences. There is no one size fits all. I can't comment on the path report as my husband's case was different. I sure hope that someone here can help you with that.

I wish you the best as you move forward whatever you decide to do. By the way, HUP was where my husband received (still receives) his care, too. I volunteer there every week. If you ever want my help, please Private Message me.

Hi SLL, and welcome -- The pathologist's statement means that there is some factor that would be consistent with lymphovascular invasion, but the evidence is inconclusive. That rises a bit above an unfounded suspicion.

In your situation I would definitely seek a second opinion at a large teaching hospital. A different doc may provide compelling reasons for radiation, or confirm your current doc's ambivalence on the necessity of radiation. I would ask your current hospital to retain your tissue cassettes so that they can be reviewed by another pathologist if needed.

This decision is just too important to rely on the opinion of a single tumor board. The next step will always be your choice, of course.

Good luck!

My friend works for a top general surgeon at a local hospital - we have a cancer treatment facility within the three hospital network... He's a smart guy and good at his job. My friend had her thyroid checked - local ent (very good) looked at her pathology - and scans and said, well the pathology was inconclusive (for thyroid cancer) if you are concerned because the nodule has grown I would, recommend removing half of your thyroid as precautionary. (Remember he is reliant on the pathologist) her family dr. Says I think you should go see dr. Irish. (My ENT out of our main cancer center) she was content to follow through with the advice of the local ENT since her boss (the top surgeon) concurred with his recommendation. She ended up with an appointment with my dr. Anyway so she figured she would go see him just to be on the safe side since the appointment was already booked. She walked into his appointment and he was telling her that she had thyroid cancer and her entire thyroid should be removed as she had a nodule on the other side as well. My friend almost fell off her chair. She said what? It was inconclusive - my dr. Said... No you have thyroid cancer. You have two of the three markers in your tissue sample that we look for - the other one can only be discovered upon removal of the thyroid. Trust me you have thyroid cancer. We also asked for the tissue samples to be sent to us and our pathologist concurs.

It really is about how good and experienced your dr. Is and the pathologist is. I wouldn't risk my life on a maybe.

Hugs. (She had her whole thyroid removed btw and her boss - the big wig surgeon was scratching his head... The pathologist clearly missed the markers, and most importantly there's a good chance he / she may have missed them on the previous biopsy as well.)

Hi, Mamacita, thank you for your response. Actually, I am being treated at a large teaching hospital ~ the University of PA (HUP). My surgeon is the Director of the Dept of Otorhinolaryngology: Head and Neck Surgery. Patients come to him for second opinions.

My "beef" is with the pathologist. I Googled her and found out that her specialty is thyroid cancer. Most of the papers she has published deal with the thyroid. Her report was detailed to the "nth" degree on every other aspect dealing with margins (which were all clean) and she stated unequivocally that "no definitive perineural invasion" could be identified. That is why I am bothered by her statement that areas are only "suspicious for lymphovascular invasion." If there is some factor that would be consistent with lymphovascular invasion, seems to me she would have identified what that factor was, given her attention to detail in all other areas. Her vagueness in this area makes me wonder if it might possibly just be a "CYA" comment.

The Board at HUP meets every week to discuss every case. From what I was made to understand, there are surgeons, oncologists, radiologists, pathologists, etc. who meet to discuss each case. They are not just a "single tumor board."

As I gave my permission prior to surgery to use my tissues in a research study, I am pretty confident that HUP will be retaining all my tissue specimens.

I was hoping this forum would be helpful to me, but since it seems that there are no members with my issue, I guess I'm just on my own and will have to made a decision based on my "gut feeling" as things unfold in the future.

If you search for PLGA using the search box in the upper right area of each forum page, you'll see a few threads started by people with polymorphous low-grade adenocarcinoma -- one in 2006, one in 2010 and two in 2013 (here and here).

Click on the names of the people who started those threads and then click "View Profile," which will take you to their contact information. Assuming their email addresses are still good, that would be one way to get in touch with someone who has experienced the specifics of what you're going through.

Certainly the folks here can be helpful in more general areas -- if it turns out that you have to have radiation, for instance, you'll get many suggestions. And several people here have had obturators so could offer advice for any issues with that.

I wish you all the best.

Hi SLL, it sounds as though your hospital really has your confidence, that's so important. I am just a huge believer in 2nd opinions and had the thought it might be helpful to you, too. I think MD Anderson might be the only hospital I wouldn't back up with another.

At every crucial juncture, I get opinions from incredible teams of doctors at two major teaching hospitals. Each tumor board is made up of multiple docs. I've done it 3 times now and there's been a big variance in recommendation every single time.

I hope you connect with some of the folks who share your specific diagnosis, it helps to not feel alone. In the meantime we are here for you!

Lynn

If you are concerned about the pathologists report ask it to be checked by another pathologist, or ask for an explanation from your dr. As to what precisely the comment means and why it's not concerning. hugs