Scared - Not Sure I Belong Here
Hi Everyone,
I’m going to preface this by saying that my husband is in the process of testing/ scans and we have not received results beyond physical exam and ultrasound. I have a lot of questions and am in need of some support. That said, if this is not an appropriate place for me to be please let me know.
My 38 year old husband has had a large, hard, not painful lump behind his jaw and right below his ear for approximately a year and a half. We discussed it around the time that he first noticed it but with a pregnancy, career change and young daughter it was easy for us to chalk it up to a swollen lymph node and let it go.
Flash forward to May of this year and I visually noticed that the mass had grown while I was cutting his hair. We talked about it, he admitted that he is scared to find out what it is, and we made an appointment with his GP. He saw his GP last Monday and was referred for a same day ultrasound. The ultrasound found a “3.3 cm x 2.4 cm x 3.2 cm hypoechogenic mildly heterogeneous mass with gentle lobulation.”
CT was scheduled for next Friday, July 8th.
I have spent hours on NCBI.gov since Monday reading research articles and anything I can learn about neck mass sonogram results. Nothing that I’ve read seems to be good. I know being Dr. Google is frowned upon but I do have a fairly extensive understanding of anatomy and physiology and stuck to true scientific literature.
My and my husband’s fear is that this is cancer and what that will mean for our family and two young kids (6 years old and 16-months). Hubby is keeping a zen mentality about the whole thing and remaining optimistic, at least on the exterior. I on the other hand am gathering information and preparing for all possible (and statistically probable) outcomes. After reading the ultrasound results it is difficult to turn a blind eye to the obvious characteristics of malignancy. If that is the case I need to be prepared so I can support my family and be strong.
We have agreed not inform friends or family until after we have conclusive answers. My problem is that I can’t stop thinking about what this could mean. I have expressed my fear to my husband but don’t want it to be our only topic of conversation. He is being so emotionally strong and I don’t want risk hurting his optimism. The truth is that I’m really scared and considering mortality in a way I never have before. I have walked the long journey of treatment with family members and have provided hospice to two family members who passed from metastatic cancer. I can’t seem to shake the reality of what this all could mean for us.
On the other hand, if this is a benign mass or weird reactive lymph node then I’m literally keeping myself up at night stressing over a bone issue. I just can’t shake the fear over the masses size and not-very-positive characteristics.
As a wife awaiting a potential diagnosis I feel weird reaching out to this community for support but I’m at a loss. I feel like I can at least introduce myself and begin gaining an understanding support system if we do get news that we’re dreading. Alternatively, if the mass is benign maybe I can use this thread to give hope to other patients and partners awaiting similar results.
Writing this I’m worried that I will come off as a hypochondriac to a community that has already received their diagnosis’ and are going through treatment. I hope that this post doesn’t come off as rude or insensitive.
Comments
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Relax and wait for the results. It could be benign like a cyst or lypoma. Then if it's not, your doctors will give him the remedy he needs. I know you must be freaking out. This is very scary and you have every right to feel this way. But wait for the results before you make yourself so stressed. I wish all the best for you. Please update us.
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Hello and welcome to the CSN H&N forum.
I don't see this as an inappropriate place for your situation though you are not sure of the diagnosis yet after all Head & Neck is in the title of this forum and your husband's swelling is in that area. And I don't see you as anywhere near rude or insensitive, you are just looking for answers.
All that being said right now all you know is there is a swelling or lump of some sort under his skin is what I get from it. I looked up the 3 words I didn't understand hypoechogenic, heterogeneous, and lobulation.
hypoechogenic (comparative more hypoechogenic, superlative most hypoechogenic) (medicine) Minimally echogenic, as is normal in some tissue types and unusual in others.
What is heterogeneous in medical terms?
Heterogeneous refers to a structure with dissimilar components or elements, appearing irregular or variegated. For example, a dermoid cyst has heterogeneous attenuation on CT. It is the antonym for homogeneous, meaning a structure with similar components. Jul 23, 2021
Medical Definition of lobulation
1a : the quality or state of being lobulated. b : the formation of or division into lobules. 2 : lobule.
I still don't really see anything in there that tells us definitively what is going on.
So there have been others that have come here suspecting they or a loved one had cancer, in fact, they were sure they had cancer because it was a sore area, or felt hard, or there was a lump, etc.
But as in your situation, no real tests were done yet and some of them found out a little later that they worried themselves sick and were depressed and drove everyone nuts and it turned out to be nothing or a minor issue. Please keep in mind here I am not chastising you I in fact commend you for finally getting on this thing because if it is cancer you want to eradicate it as soon as possible. It could just be a gathering of fluid for some reason that needs to be drained.
Anyway quit worrying yourself, it doesn't do a bit of good, hopefully, this is something simple. And if it would happen to be cancer all the worrying in the world won't change it, you just move forward and deal with it. There are many ways to treat cancer these days, it is not a death sentence anymore, I can vouch for that as I have had cancer 3 times now.
So anyway we have a saying on here "It's Not Cancer Till They Say It's Cancer"
So the docs have done an ultrasound. Nothing definitive and have now ordered a CT scan.
This is the normal progression of things although in the realm of H&N situations on here I rarely see someone having an ultrasound, which may be a good omen as it seems to me whatever is going on is near the surface.
So in H&N cancer many times people will go to their family doc. If he or she suspects cancer or something like it that requires a specialist then the next stop is an ENT (Ear Nose & Throat) specialist and he may or may not do a scope on you which is a flexible tube with a camera on the end and they insert it in your nose and the can go in and look for any problems in your nasal and throat areas, etc. In a situation like your husband, I doubt they would do that because I don't think they could see anything to help them in their diagnosis. The next thing they would do is order a CT Scan with contrast, or dye as many of us call it. I don't fully understand what all it shows but I believe if you have any possibility of an area being cancerous it will show on the CT as yes it is cancer, or yes it is very suspect, or no they can see there is no problem. So I believe your doctors are on the right track here. The next thing that happens is if there is obvious cancer or there is a suspicion of cancer a biopsy is ordered to get a sample and determine yes or no on cancer and if so what kind it is so they know how to treat it. Then if they do find verified cancer with a biopsy they will send you for what they call a PET scan with radioactive dye, which is really just a whole-body scan (eyes to thighs) to make sure the cancer is isolated in one place or see if it had metastasized. Then when all that is done they will work up a treatment plan for your particular situation, that is if you have cancer.
So as you can see it is not just a one-step thing, they will do scans and verify with a biopsy or unverified-no cancer So until you have a biopsy that verifies you have cancer and what kind, you don't have cancer.
I invite you to read another recent post on here from 9 days ago, June the 24th it was posted, another lady has Eshphageal Wall Thickening and is sure it must be cancer and is worried and upset, this post may help you also. She does not have a biopsy verifying anything yet and until you get that, you don't have cancer, something else is going on, that is the way the medical establishment treats it they don't guess at cancer. Please also refer to this post for info.
As far as Dr. Google, that is where I get all my info from what I am not familiar with but limit yourself to good-bonified medical sites and good medical information sites. And don't just search to let your mind wander, gather facts, and be satisfied. and stay away from forums that do not deal in facts.
This would also be a good time to for praying and trusting in God.
Any more questions, feel free to ask I am sure someone will help.
Wishing You the Best
Take care, God Bless-Russ
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WorriedWife4,
You found the right place for information. If you would like to read some solid information from many on this site, you can view the first Thread on the top of the H & N Discussion Board. It is a STICKY and started by Youngblood22 many years ago.
Dr. Google has a lot of information as well, but a good bit of it is old so it can be misleading. As Russ stated, "It not cancer until the Dr. says it is cancer". We truly understand how you feel. Your mind is probably racing at Warp Speed and trying to absorb information like you are drinking from a Fire Hose.
You will know more after the tests and a plan is put in place. We will be here to walk both of you thru all this. The road can be bumpy, but each person handles it differently. Some people run, some walk and others crawl to the finish line, we just never know how we will handle the Treatments.
Ask as many questions as you need to, we are here for just that reason. My Best to Both of You
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Hi Russ,
Thank you so much for your reply and kind words. I agree that this is an ENT issue until proven otherwise. We’re calling our GP on Monday to inquire about a referral as I presume that is where we will likely end up after the CT(?). We can always cancel if the results indicate that an ENT is not appropriate.
The mass/lump is relatively close to the surface which was the reason for an ultrasound from what I gathered. I’m a little confused what the CT with contrast on the 8th will show beyond a clearer image of the area and detect any other abnormalities.
Your reply made me feel more confident: “It’s not cancer until the Dr. Says it’s cancer”. I’ll let you know if any questions come up and will update the thread once we know something more concrete.
Thank you.
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MarineE5,
I took your advice and went through the STICKY thread by Youngblood22. What a fantastic wealth of information. I am attempting to stay off of Google for the moment. We both volunteer doing large animal rescue during wildfire season and I’ve been grateful to have some preoccupation providing documentation support to other counties.
Drinking out of a fire hose is an accurate analogy for what I’ve been experiencing. I’ve always been the type of person who likes to be well informed but that need is on hyperdrive now.
I will update once we have more results.
Thank you and I hope you’re doing well.
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Thank you for your kindness.
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Thank you, Logan51. I hope you’re doing well. We emailed our GP to ask for ENT referral last night and will follow up over the phone on Monday.
One question for the group… Has anyone received treatment through Kaiser? We have some less than impressive experiences with them as far as scheduling and a negative birthing experience. Just hoping for a confirmation that someone has had a positive experience with the network.
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Thank you for your kindness.
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Hello Everyone, Just wanted to jump on and give a quick update. We met with the head of Kaiser H&N surgery yesterday afternoon. So far, what we know is that Nolan has a deep lobe parotid tumor with facial nerve involvement. The doctor did an FNA but warned that they aren’t necessarily conclusive for this type of tumor. He did mention concern for malignancy due to fast growth and the tingling sensations Nolan has been feeling in his face - this is something Nolan shared with me only recently. Regardless of whether the tumor is benign or malignant they are moving forward with surgical removal. We will discuss treatment plan once the FNA results are back as the results will be surgically important. Oh yes, 80% of parotid tumors are benign which means the numbers are on our side!!!
So far, it is not great but it’s not definitively (nor probably) cancer. I’ll update next week once we have the FNA results… Hoping that that will be our last update on here.
Thank you all.
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Wwife thank you for the update on your situation it is appreciated. I certainly am wishing for you and especially Nolan a good surgery as little invasive as possible and hopefully very little nerve impact. You got me on the FNA so I looked it up and for general info on the forum here it stands for "Fine Needle Aspiration"
A fine needle aspiration (FNA) is a type of biopsy. It uses a very thin needle and syringe to remove a sample of cells, tissue or fluid from an abnormal area or lump in the body. The sample is then examined under a microscope. FNA is also called fine needle aspiration biopsy, or fine needle biopsy.
Again thanks for the update, praying it's not malignant but a benign growth and that Nolan's treatment moving forward produces amazing results with little impact on your lives, just another bump in the road.
Wishing You the Best
Take Care God Bless-Russ
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Thank you, Russ. The last week has been a whirlwind. Last Monday Nolan began experiencing partial Bell’s Palsy (facial paralysis) in the region of his left eye. The same day we received non-diagnostic biopsy results. We went for a second option out of network on Tuesday with a well known parotid surgeon. His clinical prognosis wasn’t great and suggested that because of the tumors location we needed to be in surgery within 2 weeks. We met with our Kaiser ENT to explain the new Palsy symptoms and he expedited treatment as well.
We’ve elected to go private as Nolan had an MRI yesterday that showed an almost centimeter of growth since his last scan exactly 3 weeks before. We are headed to Los Angeles this Thursday, 8/4 for pre-op and surgery will take place on 8/8. This will be a complete parotidectomy with potential neck dissection if deemed necessary.
We will not have an answer as to what this tumor is until pathology/histology following surgery (potentially during surgery if the surgeon elects to take a frozen biopsy.) I’m still in a gray area of not being sure if the forum is appropriate as we just don’t know what this thing is yet. I said I would update and will let you all know once we have a conclusive answer.
We’re staying positive and praying this thing is benign. We’ll know more in the coming weeks.
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Wwife, it appears things are happening faster than expected. This sudden onset of Bell's Palsey is directly related to the tumors I assume. Then to get a diagnosis of him needing surgery right away is definitely a whirlwind. What is the situation with a biopsy that is non-diagnostic? Wouldn't it find an answer one way or the other? I don't know how far you are from Los Angelos but I hope not too far. Anyway, it seems you have found a surgeon you are comfortable with. Hopefully, this surgery will remove all the tumors and for that matter, we are praying for benign tumors. Prayers your way in all this and may God give you the strength and blessings to get through this.
As far as this forum being appropriate my opinion is it is a head and neck forum and that is exactly where the issue is. Whether it is deemed cancer or you are not sure I don't think that matters, we are here to help anyone with support for head and neck issues
God bless you folks and stay strong.
Praying for you-Wishing You the Best
Take Care God Bless-Russ
Hey Wwife could you give a first name we could use? Thank you.
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Thank you, Russ. I’m thinking about starting a new thread to get some info from others who have undergone a complete parotidectomy as I’m hoping to get more info on healing time, best care, etc.
From what I understand (I’m not a Medical Doctor) the non-diagnostic biopsy was due to the ENT not hitting the actual tumor or not getting any tumor cells. He got normal salivary gland cells instead of whatever the tumor is made up of. We’ve opted out of a second biopsy as our second opinion made it clear that we’re in a “get it out first, ask questions later” scenario. Our in network ENT had the same opinion but is restricted by the diagnostic requirements we must meet before our Tumor Board referral - I will refrain from complaining about our health care system beyond that. Our surgeon said something about sending a frozen slice of it to pathology during surgery if need be and seems more concerned with growth and imaging than getting a conclusive biopsy.
At this point we have chosen a surgeon that we trust and are turning our faith over to him and God. Your kindness throughout this has been a beacon of light. Please know how much we have appreciated you. I will keep updating this thread as we know more.
Our thoughts are with you,
Crystal
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Dear Crystal my best wishes to you and your husband. I understand it is remove it as soon as they can now because of the growth. If you feel a new thread would help certainly post one. Too bad the biopsy was not good but when they operate they should be able to test it right away. When I had a small area on my tongue removed my ENT said he would remove what he thought was enough and have it checked for clear margins and if there was still cancer cells he would take more and would have clear margins when he was done. I am glad you have a surgeon you have confidence in that means a lot. I was like that with my ENT I had complete confidence that I was in excellent hands. Thanks for your appreciation, just trying to help others' journeys a little easier. If I can help in any particular way let me know and this forum has private messaging.
I did a little searching and found a couple things, hope they help--
Parotidectomy (say "puh-rawt-ih-DEK-tuh-mee") is the removal of the parotid glands, located below the ears. They make saliva, which enters the mouth through a tube (duct) near the back teeth. Most tumors that grow in the parotid glands are benign, which means they aren't cancer.
Something from Sloan Kettering--
I have also found videos from the Mayo Clinic on superficial and total parotidectomy but they do show the whole operation and I am not sure if you want to see them. Some people don't want to, some don't mind. So let me know if you want the videos I can post the links on the forum or private message them to you, your choice.
You folks are doing all you can and have a good medical team.
As you said keep your faith strong and God will provide.
He is your ever-present help in times of trouble.
Pray fervently.
I will put you on my prayer list although I have already been praying for you and your husband.
Wishing You the Best
Take Care God Bless-Russ
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