Hi Emma,

A very warm welcome to our forum.

I am sorry to hear that you have been waiting so long for your results and fully understand the worry that this must be causing you. In answer to your first question, yes, it is usual for some biopsies to be sent to other hospitals. Sometimes this will confirm a diagnosis, but in other cases, it may lead to further tests. It can take longer to get your results, when your biopsy is sent to another hospital, but I would have thought that you should have heard something by now. Why not phone your consultant's secretary and see if they have had the results back from the other hospital yet? Make sure that you let her know how long you have been waiting and how worried you are.  If they're not back yet, ask if she could chase them up for you and inform you when they arrive. 

She won't be able to give you any results herself - this will have to be done by the doctor. However, she should be able to persuade the doctor to contact you. Don't be afraid to ask the doctor to go over everything again. It is not at all unusual for us to forget what is said, in the heat of the moment.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine.

Thank you for your reply, there is some really useful advice there  

I last spoke to someone on Friday and she said the results were not back yet. She did say I should receive another appointment soon but then my phone cut off - twice and she didn't call back again. It could have been comical if I hadn't felt my future hinged on that one call. Frustratingly I had poor reception at the time as I parked in a layby to take the call as I didn't want to receive the news at work or at home (kids on half term) and at the time I thought that was the sensible option. I was even prepared with a list of questions this time so I did feel quite distraught when I couldn't speak to anyone. Unfortunately the appointment was booked for 450pm and as the phone cut off all of the staff had gone home by the time I managed to get from the switchboard through to the maxillofacial unit and the main reception told me to try again on Monday.

I actually have no idea if it was the Dr or secretary I spoke to and my appointment this time was booked with a different named Dr to the one who did my initial exam/Biopsy/first results at hosp/2x results on phone etc. 

I will definitely give the hospital a call on Monday and hopefully get some more information. 

I really appreciate you taking the time to reply. 

Emma x

After several calls today I finally managed to get in touch with the a random secretary and she tracked down my consultant. She confirmed my results are now back and I have an appointment on Wednesday morning. I feel better that I am going to get an answer either way and crossing everything until then xx

Hi Emma,

I am so glad to hear that you have an appointment at last. Can you bring someone with you to your appointment? I always go armed with a duplicate list of questions. I give one to my husband and I keep one for myself. As I'm asking the questions, he writes down the answers. This way we know exactly what was said at the time.  I sincerely hope that this turns out to be good news. Either way, you are better knowing.

I shall be thinking of you on Wednesday and have everything crossed in the meantime.

Please keep in touch and let us know how you get on. Remember that we are always here for you.

Kind regards,

Jolamine xx

Thank you Jolamine,

I'm not sure what I am doing yet.

I have always preferred to deal with things on my own. I totally have the support there but I struggle to ask for it as I think I would prefer to get all of the information on my own, deal with it and then speak to my husband and family. Saying that though, it didn't go too well at my first appointment as I literally forgot everything that was said so I am going to give that some thought.

If it is bad news my husband will be a wreck and I think I would find that harder to deal with if i'm honest. I will 100% arm myself with some questions this time and I think I will have the sense to ask them, whatever I decide to do.

Thank you for your kind words and support x

Hi Emma,

t is totally up to you. I know exactly what you mean about dealing with things on your own. I am the same, but this is the one time that I have found it helpful to have someone with me. It is a fact that most of us forget about 80% of the conversation before we leave the hospital and I suspect that it's more than that when we get bad news. Never be afraid to ask questions. There is no such thing as a stupid question.

Kind regards,

Jolamine xx

Hi Jolamine,

I got my results today and it wasnt good news I'm afraid. I do have a carcinoma in my saliva gland and the consultant said they think it is a low grade at present. She has informed me that i will need surgery to cut out the remaining tissue plus a large margin as although the initial biopsy was supposed to be a removal it was too large at the time so they took a sample instead. I have an MRI booked for Sunday, more bloods on Monday and also an eye appointment on the 12th as I was diagnosed with a cataracts in my left eye last week, but I suspect it may all be linked?? She initially said the above tests would take 2/3 weeks but my phone starting ringing about an hour later so maybe she meant the oncologist appointment would be 2/3 weeks?

I must say I was relieved to finally get a diagnosis of sorts. I am terrified at the prospect of the 'large margins' surgery given the location at the back of my mouth/throat but will take it all step by step. I have spoken to work and they are amazing. I am a front line cop and they have been so accommodating, so I cant fault them.

The hardest part was telling my husband as he reacted exactly how I knew he would (absolutely no criticism, `but he is the emotional one) and then the kids. The first thing my 16y.o son said as we sat them down 'oh God, who is dying' - bless him

Hopefully I will get some slightly positive news with some of upcoming results x

Hi Emma,

This is definitely not the news that any of us were hoping for. I am so sorry to hear this. It doesn't sound as if this was your week, what with a cataract diagnosis, as well. I have had both of mine operated on a number of years ago. It was a very straightforward procedure and my sight is now better than it has ever been. I have always been very short sighted and they corrected that at the same time.

Unwanted as your cancer diagnosis is, I expect that it is better to know at last and to start to deal with it.  It is good to hear that there have been no further delays and that your MRI is already booked, along with your bloods on Monday. Has the consultant indicated how soon you could have surgery?  I don't expect that there's any urgency for your oncology appointment, until after you've had your operation. It is good news that your carcinoma seems to be low grade, but not so good that it is so large. I understand your concerns about taking a large margin in that area, but this is something that your surgeon must do routinely. Did you ask whether or not she expected any problems in getting a clear margin? 

I am delighted to hear that your work have been so accommodating, as I have heard very unfortunate stories about some employers - it's hard enough to deal with all that is going on, without having your employers on your back as well. 

It is never easy to break the news to loved ones.  My husband has dementia, along with a plethora of other medical conditions and he gets very emotional too. Many people on this forum complain that their partners are not at all understanding, so I suppose that we're lucky. My children were young teenagers when I had to break the news that I had breast cancer. We hadn't long lost my mum to secondary breast cancer and I had a second bout myself, a year after my initial diagnosis. Both dealt with it surprisingly well and have been very supportive.  That was all 14 years ago now and i still lead a busy and fulfilling life. What family do you have, as well as your son?

Did you get a chance to ask any questions today? Make sure that you write down any, as you think of them and take them along to your appointments. This  may not be the easiest of journeys, but it is perfectly "doable" and you will find the strength to get through it. 

Please keep in touch and let us know how you get on with your tests. Thinking of you and always here for you.

Kind regards,

Jolamine xx

That is reassuring about the cataract. My vision just staring getting blurry and cloudy in my left eye about 6/8 weeks ago and I assumed it was high BP/Stress but booked the eye test to make sure. I asked for the hosp referral due to everything going on and as I drive on day/night shifts at work and it was getting to a point where I couldn't comfortably or safely drive at night given my job. I was given new reading glasses (wearing for years) and distance glasses (had eyes lasered 15/20 yrs ago) but I think both prescriptions are wrong as they really aren't helping. That's probably a problem for next week.

My direct manager knew what was going on but I hadn't told any of my staff. I think they all thought I was either about to get divorced or going through a mid life crisis as I haven't been myself. Some days I was so distracted i struggled to remember what I was doing or put a sentence together. I sent them a message earlier and they have all been very supportive. It is surprisingly reassuring to share - probably a first for me as I am a very private person ( I say typing on here!). Hiding at home on a computer/text message is quite a bit of a safety net and I certainly couldn't have these conversations in open forum at the moment.

I am really lucky with my husband, although he drives me insane (as Im sure I do him!). Up until now he refused to accept that it would be cancer so I think that is what has hit him so hard. He has been very defensive in a way I think to protect me but now its out there. My kids are 14/16 and that was tough and I can now imagine what you went through, especially with the sadness of losing your mum. They both reacted in the opposite ways to each other and to what imagined, Glad to hear that you are doing well. Are you all clear now?

I did have lots of questions but you were right and tunnel vision crept in very quickly. The Dr had answered most of them already but most of them werent really appropriate as she said I need the scans to confirm the precise location/extent of cancer/whether spread/level of surgery and treatment plan with or post surgery. She said the oncologist would discuss this with me. 

Emma xx

Hi Emma,

I needed good sight for my work too. I was a Podiatrist  and worked until last year, when I finally retired at 73. It will be equally important for you to have good vision for driving, especially at night. Is it just your left eye that is affected? Both of mine were bad. Don't get any new glasses until after your had your cataract operation, as you'll need new glasses then. Have you got an appointment for eye surgery yet, or is your appointment on 12th just for further assessment? 

I know just how hard it is to keep yourself functioning when hit with a cancer diagnosis. I had 6 members of staff in my own practice and I'm sure that they had similar thoughts about me, as yours had. I didn't want to say anything to patients, until I eventually had to explain my absence from work. I have always been a very private person. My first visit to this forum was when I discovered it by chance. I was so distraught at the time, that I decided to dip my toe in the water, so to speak and I found it helpful to write down how I felt. In a short time, I had some tremendous support from other members, who really understood what I was going through. I have remained here ever since, trying to support others. 

It sounds as if you will have the support that you'll need from your family and friends, which is good. I found this really helpful. Your kids are both old enough to know what a cancer diagnosis entails and will have heard horror stories from friends at school, who may have lost parents, etc. You will find that the more positive you can appear about the outcome, the better they will cope.

You will probably find that you will have a lot more questions, now that you know what you are dealing with. You'll find new ones creep in, after you've had your scans I found that I had a new batch every time I saw my consultant. I am fortunate in that I've been clear for the past 13 years, although I am going back to the clinic shortly to check that there is no regrowth. It's hard to tell whether what I feel are lumps, or scar tissue. I had a lumpectomy first time and then a double mastectomy for the second bout, so there is quite a lot of scarring after both surgeries. 

I am surprised that nobody with a similar diagnosis has come along to talk to you and wonder if this is because your title doesn't indicate that you have problems with your saliva gland. If you want to, you could ask the moderators to change the title for you - perhaps to something like Saliva gland Cancer - this would find people who are on the same cancer journey, which you might find helpful. It's often reassuring to be able to discuss day to day problems with others who've had the same experience.

I am glad to see that you are having an MRI - this should give a much clearer picture of what you're dealing with. Have you had an MRI before? You are just slowly passing through a tunnel, but it can feel claustrophobic at times. They usually offer to play you some music. I have found that Meat Loaf's "Bat Out of Hell" , played really loud, is a good distraction.

I shall be thinking of you on Sunday and hope that it goes well.

Kind regards,

Jolamine xx

I am thinking of you too. I understand what you mean by "Hiding at home on a computer/text message is quite a bit of a safety net and I certainly couldn't have these conversations in open forum at the moment."

Thank you Mary. I have actually told a few people that I immediately work with and family via text and it actually feels ok to type about it. I struggle with being the centre of attention so Im happier to drop the bombshell and make a joke for distraction to make my escape. Ive decided to take a few days off work and asked my boss to tell my extended shift. At least it is done then x

Thank you Mary. I have actually told a few people that I immediately work with and family via text and it actually feels ok to type about it. I struggle with being the centre of attention so Im happier to drop the bombshell and make a joke for distraction to make my escape. Ive decided to take a few days off work and asked my boss to tell my extended shift. At least it is done then x