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Difficulty getting diagnosis

Difficulty getting diagnosis

Posted by Nat75 on Mar 8, 2020 12:56 pm

I posted once long ago about my troubles to get diagnosed with whatever is wrong with me. I am afraid it’s cancer but if it is my docs have made so many mistakes I can’t count anymore. In dec I had follow up of scan on lumps under armpit I have several large lumps in both sides. They said it was just cyst simple and complex whatever that meant. Since then I have pain in the area and itching so I am going back yet again. I’m waiting for app with nerve specialist for a year now :( because of tingling in hands and feet,  the back of my head aches sometimes when I felt I found a lump but when I showed my doc she said it was just bone and same on both sides but doesn’t feel the same to me and why does it ache sometimes and itch? I am always so tired and itchy. I am trying again as I said this week going to doctor. I am posting because I want to ask if anyone else had so much difficulty to be diagnosed whether it is cancer or something else. I have been going to docs for 2 years now and feel worse all the time, 

Re: Difficulty getting diagnosis

Posted by Essjay on Mar 8, 2020 4:23 pm

Hi Nat75‍ 
I went back to your earlier posts to remind myself what you were concerned with.

It’s challenging when we can feel or sense things in our bodies and seek medical attention, but get no answers. How can there be nothing wrong, when there’s clearly something wrong?

I’m going to tell you a story about me. About 6-7 years ago I was struggling. After a car accident in which I had a minor fracture to a vertebrae and torsion to my pelvis, my health spiralled. I had 4-6 migraines a week, and it hurt to touch my head anywhere, I couldn’t sleep, my joints ached, I had tingling in my feet, my blood pressure was elevated, my cholesterol was elevated, my iron levels were low, and I had crippling pyriformis syndrome. I saw chiropractors, physiotherapists, acupuncturists, family doctors, and each one tried to fix a little bit of me. Nothing worked and I was really struggling. I wasn’t at my best at anything for a couple of years -  work, family life, friends etc. Then I lost my job when funding ran out and My mental health plummeted. I was too anxious to eat or sleep.

I found a new job in a wonderful place, where I still work. My doctor found the magic cure for my migraines and I started sleeping again, I sought counselling to help me deal with losing my job and learned to let go of tension which sorted my pyriformis syndrome. I focused my attention on healthy eating and sorted my iron levels, cholesterol, and blood pressure and my tingling feet disappeared, I started exercising again which helped my joints and my sleep.

Why am I telling you this? Because I blamed the car accident for my problems, but it was a catalogue of things from being bullied in the workplace causing anxiety, menopause, poor diet, lack of exercise. By tackling different areas of my life and each problem independently I got better. As a result, when I did find a lump and went through diagnosis and treatment for cancer I was in good shape physically and mentally.

Is this the answer for you? I don’t know.

But how is your sleep, your diet, your fitness? How good a shape are you for dealing with cancer treatment if it turns out to be cancer? Could you be healthier? And could you do something about it while you wait for answers?

I hope you can find some answers very soon.

best wishes Essjay 
Triple Negative Breast Cancer survivor since July 2018

Re: Difficulty getting diagnosis

Posted by Nat75 on Mar 8, 2020 7:53 pm

My sleep is good I, always tired and fall asleep easily and sleep well. Diet and fitness could be better. I am so tired I don’t have energy to exercise as I should.. I’ve had anemia twice in last 2 years and low voted but I’m taking iron supplements. Thank you for the good wishes I really wish for answers soon not knowing why I feel so unwell is very stressful which I’m sure isn’t helping. 

Re: Difficulty getting diagnosis

Posted by Cynthia Mac on Mar 9, 2020 10:47 am

Hi, Nat75‍ , it does sound as though you could have a lot going on right now. Have you tried some “simple remedies” to see if you can help get some relief?

For example, the itching under your arms could be related to an anti-perspirant or laundry soap or body wash that’s affecting the skin in that area.

I’ve had some experience with tingling in one hand, and I learned from my osteopath that it was a bit of tendonitis that could have been pinching a nerve in my elbow. My Dad has also had some issues with pain, and it turned out that he had a pinched nerve in his neck.

As for exercise, I used to tell my Mom “you need to spend energy to have energy.” I wish she’d spent a little more energy, because I lost her suddenly 2 1/2 years ago to a heart condition none of us knew she had and maybe, if she’d walked or used her treadmill just a little more, she’d still be with us. I’ve got an extra 40 or so on me, and it’s time for me to start taking my own advice. While I did walk a 5k last week and I get out walking with a friend once or twice a week, I could be doing more.

Sometimes we have to advocate for ourselves, and insist on further testing, and sometimes we have to believe that our doctors “have it right on this one.” It can be very hard for us to know when to accept and when to keep pushing on.

“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Difficulty getting diagnosis

Posted by Nat75 on Mar 9, 2020 4:55 pm

The tingling for me is both hands and feet and the itching is everywhere. My bf also said last night when he woke up my face was really red when I was sleeping I didn’t know of course. Anyway I’m seeing a doctor in a couple days and.maybe this time they will have answers

Re: Difficulty getting diagnosis

Posted by Essjay on Mar 9, 2020 7:28 pm

Hope you can get some answers.

You mentioned night sweats - these would make your face red. Avoiding alcohol and caffeine before bed, and avoiding very hot spicy food makes a difference to night sweats. On the drug front, clonidine is helpful.

I was wondering why you think your symptoms point to a cancer diagnosis?
Triple Negative Breast Cancer survivor since July 2018

Re: Difficulty getting diagnosis

Posted by Kims1961 on Mar 9, 2020 11:24 pm

Nat75‍  You have some excellent responses from the others so don't have much more to add .  I wondered if you have a journal/notebook where you are tracking your symptoms?  Sometimes it is helpful to write them down - for instance - when/where and time you get the episodes of itching....it may also be helpful to take pictures of anything that is concerning to show your doctor - for example the red face at night? any rashes etc.  

Keeping a log has really helped me be clear when i meet with my doctor. 

Good luck with your appt. Please let us know how it goes.  Take care,  kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Difficulty getting diagnosis

Posted by Nat75 on Mar 10, 2020 10:35 pm

Hope you can get some answers.

You mentioned night sweats - these would make your face red. Avoiding alcohol and caffeine before bed, and avoiding very hot spicy food makes a difference to night sweats. On the drug front, clonidine is helpful.

I was wondering why you think your symptoms point to a cancer diagnosis?

because I e had these troubles for years now and get worse and worse little by little. When I think of when I first went to the doctor 2 years ago I thought I felt bad then but I’d love to feel like that today. Because I have been going so long looking for answers I have used google to search for reasons of my symptoms, I know people say stay away from google but I was so frustrated not getting answers from doctors, 

the lumps, the itching all the time, the rash, the nightsweats, tiredness, lack of appetite, anemia, are symptoms of lymphoma according to google. I know they can be other things too but all of them combined along with a some other things just make me really concerned. 

I see the doctor on Thursday..not my usual doctor I wanted fresh eyes I’ll see what she says


Re: Difficulty getting diagnosis

Posted by Treepeo on Mar 11, 2020 12:16 am

Hi Nat75‍,

Don't go looking for trouble and don't use google to diagnose yourself.  You can drive yourself crazy, and you already have enough on your plate.  I know it is hard to deal with symptoms and not get the answers you need as quickly as you would like.  But there could be numerous reasons for why you are feeling the way you are feeling.  Try not to assume the worst.  Also, do your best to relax.  Stress never helps anything.  I know it is easier said than done, but try to stay calm.

I am glad that you are seeing a different doctor on Thursday.  It never hurts to get a fresh perspective.  

Re: Difficulty getting diagnosis

Posted by Essjay on Mar 11, 2020 7:36 am

Nat75‍ Dr google is not very reliable in my experience, but it’s totally understandable that you used it to try and find answers. 

Let’s hope your new doctor can rule out lymphoma and other serious things for you xx
Triple Negative Breast Cancer survivor since July 2018

Re: Difficulty getting diagnosis

Posted by Lacey_adminCCS on Jun 9, 2020 9:53 am


How are you doing? Have you made any progress finding out what is wrong?

Thinking of you,

Re: Difficulty getting diagnosis

Posted by Nat75 on Jun 9, 2020 11:22 am

Thanks for asking :) no I haven’t had much luck but for the past few months I can’t even see a doc because of the COVID pandemic the clinics here were closed and they weren’t taking any app. I did have a app by phone. But I don’t think that helps much and I have another today. Waiting for app with specialist for test idk when that will be.

Re: Difficulty getting diagnosis

Posted by Lacey_adminCCS on Jun 16, 2020 5:16 pm

Good to hear from you Nat75‍ .

How are you feeling?

Re: Difficulty getting diagnosis

Posted by Laika57 on Jun 16, 2020 7:07 pm

Essjay‍ made a real good point. Sorting out food and exercise can make a huge difference in one's wellbeing. Hydration alone is a big one.

also Kims1961‍ suggestion of keeping a notebook is a good one. Maybe even include what you eat in that diary.

My first thought, apart from the lumps was blood sugar or an allergy of some kind. But I am no doctor by any means. And hanging out on the cancer forum does skew ones perspective.
If I remember right, I've heard similar accounts from people who are gluten inolerant. For myself it's milk. It wreaks havoc with my system. I still like it though... 

Seeing a new doctor can be good, or not. My husband did that because  all the doctors who knew his history zeroed in on the cyst on his pancreas. Guess what. The pancreas was the problem in the end...

anyhow. I hope you find some answers soon. 
Have you hugged your dog today?

Re: Difficulty getting diagnosis

Posted by Nat75 on Jun 17, 2020 12:40 am

Good to hear from you Nat75‍ .

How are you feeling?

ty for asking I’m not feeling well. A couple months ago before everything was shut down because of corona I had doc app and more blood test which included for celiac and thyroid and these were negative and another CBC which was normal. I did test positive for h pylori, doctor gave me treatment for that but it didn’t help I still have a lot of reflux and get abdominal pains. I did have brief improvement with appetite I was hungry for first time in a while. Because I didn’t improve other symptoms doc is sending me for camera in stomach to look for ulcers or anything else. 

im not sure if this is what was causing my troubles it doesn’t explain the other issues I’ve had like tingling and twitching in feet or itchiness  etc etc everything was closed here and they just starting to open up this week so I haven’t been able to see doctor or have the camera yet. I have had sore legs lately I feel crazy always something else bothering me. 


Re: Difficulty getting diagnosis

Posted by Nat75 on Jun 17, 2020 1:30 am

This may have nothing to do with anything but also I can’t get normal level of vit d. Doc prescribed vit d because I had low levels and after taking for months has barely improved so she has increased dose. 

Re: Difficulty getting diagnosis

Posted by Nervous Rex on Jun 17, 2020 3:10 am

This is what happened to me.  In 1987 I had a terrible depression.  By April then May I was feeling great - then my mom was diagnosed with advanced lung cancer and died the following October.  Her cancer had spread and she had a lump on the back of her head.  A few months later when I was on the bus home, I felt a lump on the back of my head and i had been having terrible headaches.  I stopped off at my dr.s and he said I was as white as a ghost.  He thoroughly checked out my head and couldn't feel any difference.  There wasn't any but it was the beginning of a few years of being a hypochondriac..I can't tell you how many times I thought I had something and it always made sense to me, but every time I got checked out, there was nothing wrong.  He also said my headaches were tension headaches and after giving my an old fashioned drug called a 282 Mep, my headaches would be gone in minutes...headaches that tylenol 4 didnt have an effect on were completely under control with a pain reliever that had a muscle relaxant included.

I'm not saying this is your case, but I saw some simularities.  Right before i was diagnosed with breast cancer, I was getting tingly sensations in my right hand mostly and a pain that came and went in my right arm.  I was convinced I had stage 4 cancer but then I realized I had been sleeping on my right arm a lot and my hands/fingers were tingling from being on the phone so much.  Tingling can also be from anxiety.  Also, when we are worried we tense muscles when we don't even realize we are doing that and that can cause all kinds of sensations.
When i was in my late 40's I was getting a red face after speed walking at night then it turned out to be rosacea - then awhile later as soon as I lied down it felt like I was on a heating blanket.  I thought it was weird because I wasn't having flashes and at first it was just after going to bed but the red face and hot nights were all part of menopause.

If you have had a few doctors tell you its not cancer or its probably not cancer, try to believe that - still get tests they recommend and have faith in your medical professionals.  For everything you have a symptom for and think may be cancer, there are probably a hundred other things it could be too!  I hope this helps.  Its really late here and im not saying you have anything like I have had but just in case, i brought it up.

Heather - and they don't call me nervous rex for nothin!


Re: Difficulty getting diagnosis

Posted by Essjay on Jun 17, 2020 8:25 am

Nat75‍ at this time of year we are best getting our vitamin D from the sun. Ten minutes walk or sitting in the yard or on the balcony without sunscreen. It’s good for our mental health too...

You also need calcium and some magnesium with vitamin D.

Diet helps with these too - fatty fish (tuna, mackerel, salmon), tofu, nuts (almonds, cashews), seeds (sesame, sunflower, pumpkin), Beans and chickpeas, Eggs, cheese, green leafy vegetables etc. Our absorption of vitamins and minerals from food is much better than from supplements.

Have you had full bloodwork - you mentioned you’d been checked for thyroid, but what about B12, and what about your FSH levels? 

Have you access to a counsellor to help with managing the anxiety all these health worries are causing? It’s very helpful to learn how to cope with life’s ups and downs in good health and bad. I’m doing an online course at the moment, provided by the province for free to help people through COVID. I know Ontario is running a program (Bounceback), but I don’t know about Quebec. Worth checking out though - access to a counsellor and online supports.

Hope today is a better day, and you get some answers soon. Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: Difficulty getting diagnosis

Posted by Nat75 on Jun 18, 2020 12:58 am

I know I sound nutty if I said all the things bothering me it would be a long list and everyone would roll their eyes I’m sure. I hope I am hypochondriac that is much better than what I fear but it’s just so hard to believe that as I feel worse all the time from 2 years to now the change is slow but so noticeable. 

ive had fsh it was normal not sure on b12. My doctor said my vit d is so low it isn’t caused by diet and that I needed supplements to improve but I have been trying to eat more vit d and I’ve been enjoying summer while it’s here...so short in Canada :( lol 

im at a loss now what to do so I will try to relax and just wait for my app for the cam in stomach when I have any news I will update :)

thanks for all suggestions and help :)

Re: Difficulty getting diagnosis

Posted by Buddy65 on Jul 19, 2020 8:29 am

I am reading this a bit late but I wanted to mention something. Ten tears ago my mom started getting really itchy. We tried every possible skin cream available, we switched laundry products and deodorants?  She even made changes to her diet. She went to her gp and a dermatologist and nobody could understand why she was so itchy. She kept getting referrals to other doctors who thought it was just dry skin. Finally she saw a doctor who ordered extensive bloodwork, when the results came back he sent her to a doctor at Sunnybrook Hospital. She had a bone marrow biopsy and it was finally determined it was a type of leukemia. Apparently one of the symptoms can be excessive itchiness. 

I am not trying to scare you but it wouldn't hurt to mention it to your doctor. Have you had blood work done?

I hope this is not what you have but you seem pretty convinced there is something going on and that feeling is often the most important symptom of all. 

Let us know.