| Joined: Sep 2014 Posts: 5 Member | OP Member Joined: Sep 2014 Posts: 5 | Wow, how embarrassing! All of that information I just gave out. Ugh, call it a leap of faith or a moment of insecurity I guess. See I guess my mind must be slipping with the head ache. Lol. Did I mention I don't do social well. Point taken as I am totally in awe with myself over my last post. | | | | Joined: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,292 Likes: 1 | Welcome to OCF, Amanda. Hopefully, your visit here will be short and your ENT determines you have no cancer. Given you have some visible bumps and such, do ask and prod about getting a biopsy. This is the only way to know with certainty if they are cancer.
The stress and anxiety is something we are all very familiar with. The general saying is it is not cancer until proven. Do the things you do to get stress off your life in general. Try to focus on today and not worry about the future and what could be. Could be great too, right?
If the anxiety is really affecting you, call your doctor and get some medication to calm you down for now. It is totally normal for folks to get highly stressed in your situation.
Hang in there, the ENT visit is near.
Good luck don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Sep 2014 Posts: 5 Member | OP Member Joined: Sep 2014 Posts: 5 | Thanks Don! Yes, you are right, it's going to be great either way. As for ridding myself of stress, no luck, lol. Its just the way of my life right now, all thought of cancer aside. As long as my children remain healthy you will find me to be a very grateful person. I count my blessings by the moment. I will try and take your advice and live in the now, after all I guess the pain has made me strong.
Keep being awesome,
Amanda | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Amanda - The sooner you get a biopsy, the sooner you can de-stress, because you will know for sure what it is and can start doing something about it either way. For any of us, Doctor approved meds can help to "keep calm and carry on" so has to feel more in control of the situation. Too much stress can affect your immune system which is not a good thing since many of the things we worry about may not even happen! So when the what-ifs strike, try to think of all the things that can go Right instead of the ones that can go Wrong. You are a good mother and deserve to have a healthy stress-free life. So, go get that biopsy!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | hi there.. I totally hear you on your lack of confidence in the health system but you need to work through this because your health is at risk by not giving the system it's due. As a former nurse I KNOW that drs make mistakes and some are very high handed - but to do your own procedures (removing warts???? by yourself???? OUCH!) in avoidance of actually seeing a physician can only do more harm than good. Ultimately it will keep you from listening with an open mind and following through on care.(if you don't trust your dr or have faith in their care then you will always be questioning their dx, and rx) I am ALL for advocating for yourself. I do it for myself - friends and family ALL THE TIME. However, there is a fine line. No doubt your belief that they are going to blow you off or not listen enters the room when you do and this shuts them down and prevents an honest dialogue. I urge you to find a dr. you trust. I would first determine what you need from your dr. Do you need hand holding? (I personally don't) Do you need honesty? (brutal honesty can be scary but I tend to lean towards this regardless, that way there are no bad surprises) Do you need compassion? Or do you need someone who is considered the best (these guys are generally very good at what they do - but don't always have a terrific bedside manner). Once you know look into the physicians in your area, see who is tops and why, and then decide. Where oral cancer is concerned. read, and educate yourself, based on the syptomology. It sounds to me like you think that you have HPV related cancer however, usually HPV related oral cancer is found in the throat or tonsil - it does manifest in your lymph nodes as well. But the black thing on the lip could be a different type, and from what I know of this type of oral cancer it's usually quite curable. hugs and best of luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2014 Posts: 5 Member | OP Member Joined: Sep 2014 Posts: 5 | Ann-Marie, I agree. I wish it was sooner then later. I'm prepared for a biopsy on the 10th but I'm sure it will just be a consult.:( as it is I waited 3 or 4 months after the spot on my lip manifested, And I'm a month out from the consult with my primary.The things in my neck are growing fast, and my back is hurting bad. Thanks for the response BTW. | | | | Joined: Sep 2014 Posts: 5 Member | OP Member Joined: Sep 2014 Posts: 5 | Cheryl- I appreciate your background in nursing and of course meant you no disrespect. As an individual I also respect anyone in the health care profession as long as they are in it for the right reasons. The system in general sucks. I will heed your warning and make sure my attribute is in check. I myself am a cross between Becker and House. I have Schooling in psychology and I do analyse myself a lot so I will ponder what you brought to light. As far as the HPV, I have done my research to some degree. I am aware that the virus I Cary is not in the high risk category for oral cancer. However I did find a hit on one study done that relates HPV and melanoma. I am not good with quoting or paraphrasing but from what I gather the two together can be very aggressive. I need a doctor that is going to give me the time and take into consideration my past, ideas, and symptoms without worrying about losing a dollar. I have several large moles in all the places it hurts. My mouth is a mess and so is my throat. Not nearly as bad as pictures I have seen but enough to worry me. I seem to be one of those medical mysteries. When I was 12 I was diagnosed with an underactive thyroid and put on synthroid(sp). Mysteriously enough over time my thyroid regulated itself and I'm no longer on meds. Somewhat unheard of. I was also on every anti-depressant until the age of 20, when I decided to figure myself out. I have been med free for nearly 12 years, minus 1 slip back. More history?...I have smoked for 24yrs, and I drank a lot as a teenager and young adult. My kids saved me and I have always told them that through my adolescent years I never thought I would make it to 30. Now I'm wishing I had never felt that way because it scares me to think my 3yr old won't remember me. Thanks again for your time and I hope you know your value! | | | | Joined: Sep 2014 Posts: 5 Member | OP Member Joined: Sep 2014 Posts: 5 | Can I delete all of this?? I'm less then pleased with myself. Kinda lost sight that there's a whole world out there I wish not be reading these details. Yes, I'm going to have to face public again. Not so much hideaway, maybe. It seems safer in my sheltered world. Wishing it all away now. Rebuking the ugly in it. Feeling less of the need for a consult now. Healing powers Are a must for us all. I forgot that I needed to be a care giver and I have certainly learned from being here How to care for myself a bit better. Making health a priority for us all. After hearing the heart aches of others I don't feel so bad because I know there are others who have had thing horrific bad and I'm one lucky girl. | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | This is actually a great forum to share in. We really try not to judge as this journey for all of us is unique. That said, a medical mystery you might be, and in this instance particularly - I have found that by being treated by the top people in the field does make a world of difference. This of course doesn't mean that they don't make mistakes, they do, however someone who works in the cancer field and deals with specifics of a certain area all day every day - is the person you absolutely want to see. As you know - educating yourself up front - knowing the potential diagnosis, and what the normal treatment for it is, will help you push for what needs to be done if it comes to that. It is also invaluable to have this knowledge however terrifying, so that you know if your treatment or care isn't up to par.
Since you do have a background in psychology, you definitely are aware that our own mental state, preset beliefs, and overall mental state have a great bearing on the choices we make, how we see the world, and how the world perceives us.
The one thing I can add is that I live in Canada for all of it's faults we have an amazing medical system - money is not the draw for any drs. so generally that bias isn't part of the equation.
take care - and smoking... yeah.. that's a no... hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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