In May, I was diagnosed with a large tumor in my right maxillary sinus. The pathologists determined it was non-hodgkins lymphoma. I had a course of radiation in June and since then my MRI's show the tumor has shrunk, but there is still something there. The doctor can't reach the areas to do a biopsy without possibly damaging my eye. So, I have another MRI scheduled in November to see if there is any change. I am trying to find someone who has had Lymphoma in their sinuses. I live in a small town, so the doctors here don't have any experience with it. I have been to Karmanos Cancer Center in Detroit, and my doctor there has seen a few cases.
Hi there, have they done any other scans, like to the your vital organs? Often Lymphoma is present in other areas but not noticable to the person. That is the way mine was. I thought it was only in my neck lymph nodes but the full body scan and the bone biopsy showed other locations. Perhaps a bone biopsy would give them more information on what type of NHL it is without causing damage to your eye. I know the that info will help decide treatment. Just a thought. Good Luck, this has to be a very frustrating and scary position for you.
Hi, thanks for responding. I have had numerous tests. Frustrating and scary are very appropriate descriptions of this whole process. It all started back in March when I finally when to my family doctor because I had been having constant headaches and a feeling of pressure in my face. He sent me for an MRI that ended up showing a large mass in my maxillary sinus. He referred me to an ENT, who sent me for a CT scan. He said I had a very large cyst or an inverted papilloma. He scheduled me for surgery to remove it at the end of May. He said it was unlikely to be cancer. At the beginning of May, I woke up with excruciating pain in my face. My neighbor took me to the emergency room, where they did a CT scan that showed the tumor had grown and was pressing on a nerve and had begun to erode bone, including my orbital bone. They told my husband to prepare for the fact that it was probably cancer. (I was so drugged up at the time, that all I cared about was that I wasn’t in pain.) They immediately did surgery to relieve the pressure and do a biopsy. The local pathologists said it was definitely cancer, but could not agree on what type, so they sent a tissue sample to Mayo Clinic. The ENT surgeon had already contacted Henry Ford Hospital in Detroit to get me set up for surgery. He and my family doctor told me that this was “very serious”. That is when I learned that there is a lot of waiting and not knowing when you are diagnosed with cancer. And then more waiting and not knowing. Mayo pathologists determined it was indolent b-cell NHL. My doctor said that was a “good thing” because what they thought it might be would have been “a horrible diagnosis and probably not treatable”. But, with a diagnosis of lymphoma, the surgeon turned me over to a medical oncologist, since lymphoma is not treated with surgery. The medical oncologist sent me to a radiation oncologist for treatment. She also sent me to experts in lymphoma at Karmanos Cancer Center to se if I should have prophylactic chemo into my spinal fluid because of the danger of the cancer invading my Central Nervous System. That is the typical course of treatment with aggressive NHL, but they didn’t know what to do in the case of low-grade NHL. The doctors in Detroit advised a “wait and see”. I had a bone marrow biopsy that was clean and a PET scan that showed enlarged lymph nodes in my abdomen. They also advised a “wait and see” on those. I had another MRI that showed the tumor was much smaller , but their is still something in different parts of my sinuses and facial structures. The surgeon did another biopsy that just showed dead tissue, but he said it didn’t mean there wasn’t cancer in the parts he couldn’t reach. He recommended aggressive treatment with chemotherapy. The tumor board did not agree with him. I went back to the cancer center in Detroit. The board there agreed that we should wait for another MRI to see if there is any change. I still have pressure and toothache-like pain in my face, but the doctors have all said that may be my “new normal”. The waiting and trying not to think about it is really difficult. I would like to find someone who has had a similar experience to see what kind of treatment they had and how they are doing. No one has said…“you are going to be OK”…I need to know that someone has had NHL in their maxillary sinus and is doing OK.
You have been through more than enough with all your testing, etc. Thank you for sharing your DX process. It always amazes me at how much back and forth, here and there most of us have gone through to get answers. I've always said it's not the knowing that I can't handle, it's the unknown. Even with bad news we can set a course of action, but with the unknown you are left in the dark and always on the defensive. I wish I could be of more help but I can def offer you moral support. Maybe Ross on this support site can come up with additional info concerning where your NHL is located and how it has been treated. I hope someone who has also dealt with this painful form will also reach you. God Bless and may you get the answers you need to bring you some comfort. Hopefully the scan in Nov. will give the doctors more to go by for your treatment.
Sorry to hear about all your problems. My NHL was very similar to yours, although not exactly the same. Mine started in the roof of my mouth and was growing up into the sinus cavity. ENT was able to remove the tumor. My dentist had thought mine was just a periapcal abscess and had been watching it for months when I started developing sinus problems. My ENT was the one who actually diagnosed it as NHL (B Cell, Follicular) and sent me to the hematologist/oncologist.
I went through 5 months of Trenda w/Rituxan and 18 treatments of radiation (I'll take the chemo anytime over the radiation!). I'm currently in remission but on maintenance with Rituxan (4 times every 6 months for 2 years).
Good luck with your treatments, whatever it may be.
Thanks for the reply. Why did your doctors decide to do chemo? I had 20 radiation treatments, but no chemo. My doctors said they wanted to wait and see if it grows. The waiting is difficult for me, but I also don't want to have chemo if I don't need it. On the other hand, I don't want to "not" have chemo if I do need it.
PET Scan and bloodwork showed a high concentration of "cells" in my bloodstream......even though my bone marrow was clear. That's what prompted the decision to go ahead with the chemo.
The radiation was basically to get any cells that were left after removal of the tumor. Although it's unusual to remove a tumor caused by lymphoma(it's normally "shrunk" by radiation) because of the location and because my ENT had to do a 2nd biopsy to remove a larger portion for pathology, he opted to go ahead and remove the whole thing.
I said "good riddance!"...........
There seems to be a bit of a cancer cloud hanging over my house. A new tumor was discovered. The gynecological oncologist was convinced it was a Bartholin's cyst, but when he surgically removed it, he found it was another tumor. The pathology report says that is a completely different lymphoma than the one in my sinus. This one is diffuse large b-cell. So now I have both the slow growing and the aggressive kind. I start R-CHOP next Friday and my anxiety level is through the roof. To add to the stress, my husband was just diagnosed with moderately aggressive prostate cancer. So, in the middle of my chemo treatment, we will be traveling 4 hours to a hospital for his prostate surgery. And to add insult to injury, one of our cats has started peeing around the house. They are 16 and 18 years old and we are afraid we are going to have to make some tough decisions. If you are a cat lover, you will understand how difficult this is at this time. I am totally stressed out!! I could use some comforting words of advice.
WendyKath, you are certainly filling your cancer quota for a long time. Actually it is good news they found your Diffuse without it having spread further. It should responds quickly to your treatment. I can relate about your husband prostate dx, mine had his prostate cancer the year before my dx, in fact it looks like we had cancer at the same time seeing my nodes were swollen at the time of his surgery. He had his prostate removed using the DaVinic robotic proceedure, at MD Anderson. That is where I am today waiting to have my bone biopsy. Still doing W&W. I hope your husbands cancer is contained and he will not also need treatment. You can do this, but you will have to pace yourself and go one day at a time. Do what you can each day, and let the rest drop by the wayside, if it doesn't get done who cares? The most important thing is to get you and your husband back to good health. Do you have family or friends around that can take you to treatments? Visit this site often during your treatment as it will help boost your spirit as well as answer questions that pop up during treatment. God Bless and keep posting! KBeale
You have your share of 'tsuris'
Yiddish word of the day.
meaning aggrevating troubles.
You must take it one day at a time, and live each day. I believe that both you and your husband will make it through this time. And I understand about your cats. We had to sadly make "the decision" for our 16 1/2 lab.
Please keep posting, We are here to listen and understand and offer our empathetic comfort.
Peace.
Hello Wendy,Welcome aboard but sorry for your need to join us.I had a tumor in my cheek that was in the sinus.After 5 drs back and forth I went to my ENT who did an MRI with contrast then we removed it.Would need to go back and check to see just how many yrs. into this NHL I was already.Seems in these last 6-8 yrs my NHL has chosen to appear in my face and neck areas.Once after I had a node pop up on my eyebrow.Again 5drs later went and had a plastic surgeon remove it,then I had Rituxan.Long story short the surgery didn't get it all as it was pretty deep so of course it grew back.We then did radiation to that area only.This type of cancer is very chronic and will return.My onc only treats if tumors are larger and with symptoms like with me itching out of control.Must be careful when doing radiation near salvia glands as the loss of salivia after radiation can cause even more problems.That will be my LAST resort for that area.Now that you also have the aggressive form I can see why he would give you R/Chop.Back in 96-97 I had Chop alone it was no picnic.Rituxan went pretty smooth for the many years I received it alone.Recently did Rituxan/Treanda that worked but side effects brought treament to a halt.My payers to you and your hubby you certainly have your hands full..Maybe your cat is reacting to all the illness they sense these things.Please keep us posted as many of us have been there and we may be able to help.God bless,Michele dx95FNHL3
My father's tumor was located in his sinuses near his right eye. He completed radiation in march and has complete 3 cycles of VIPD. The next step is a consult with a bone marrow transplant team. Feel free to messgae me if yous like more information or you can also read my journals. Good luck. You're in my prayers.
Kazoua
Everyone has given you good information about all the cancer problems...I had the cat problems due to my stress and I talked to the Vet. We checked their urine to be sure they didn't have an infection, and then he put them on 1/4th of a 5mg. Valium tab. Yes I said Valium. It took afew months and all the peeing stopped. I didn't have to use the valium daily except for the beginning. I also had 1 rug they would choose to go on. The Vet said not to wash in bleach because that causes the smell they leave to get stronger. With the first few doses they were a little tipsy but ok, just don't let them jump up too high until they realize they are drugged then they will be careful themselves. My cats are like part of my family so I fully understand how you feel but our pets know more than we give them credit for and often do reflect our stresses. Good luck with ALL you are dealing with I am praying for you all! HUGS
I was found to have cancer in my upper left jaw/sinus area when I went in for elective endoscopic sinus surgery on 2-11-13. I had been having sinus issues for years (decades? - I'm now 60, male) and was just personally dealing with nasty bloody discharge, nosebleeds, etc. for a number of years before I found that ENTs now were doing amazing things with scopes, etc for this type of surgery. A CTscan a month earlier had shown some bone loss in the upper left jaw and my teeth were tingling in that area so my ENT did a biopsy of the area on 2-11 prior to doing the sinus surgery. The ENT doc saw the tissue was obviously cancerous so he wisely chose not to do the sinus surgery. When I awoke, I hadn't had the elective surgery and instead, was told I had cancer. The biopsy results showed it to be a nonHodgkins Lymphoma Large Diffuse B-cell Stage 1 cancer. I had my first RCHOP chemo drip treatment on 2-27-13 and my next is on 3-19-13. That day I will also receive my first of probably 3 spinal injection chemo procedures. My PETscan showed no other cancerous lymph nodes anywhere in my body. The spinal injections are to fully "bathe" the brain area with the chemo substance since I was told sometimes the brain cavity is not fully reached with chemo with the standard drip procedure. Because the cancer is in the proximity of the brain cavity, this procedure is done as a precaution. My oncologist expects to give me three chemo drip treatments (one every three weeks) and at the end of the 3 spinal infusions (late April?) we'll see how well the chemo has eliminated the cancer. She may prescribe radiation directly to the cancerous area at that point. I have been told to not expect to get the endoscopic sinus surgery for up to 2 years following the chemo treatments. It's a kick in the stomach but I'm thankful that we found the cancer early and that I have been lucky to have some excellent doctors/techs here at Univ of New Mexico Cancer Center watching over my treatment.
welcome Maz, very sorry to hear of your DX and so glad they caught it when they did. Hey why don't you start a new thread with your post. Sometimes people see the date of the old threads, (unless they are the continuing daily ones) and past them by. This is a very interesting treatment and if I recall we had someone a couple of years ago that had this treatment using injections in the spine. She had a different NHL though, but the brain was involved. I will see what I can dig up, meanwhile please continue to post and keep us updated.
take Care, kb