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Advice and Information please!

Advice and Information please!

Posted by THawk on Apr 19, 2020 7:31 am

Hello,
Sorry for the long post, but I know we all have time to read and connect right now.  My name is Teresa.  I am 43, mother of two.  I am currently dealing with a number of issues and about to go through more testing.
I have four main issues right now, and about to go to the GIMRAC clinic at Joe Brant in Burlington for help to diagnose me.  I would like some help with what questions to ask and how to help speed this along.
1.  Breast implant problem.  I had implants in 2005, and then the left needed replacing in 2009.  It is the recalled Allergan textured type.  I currently have capsule contracture, with fluid surrounding the implant.  Biopsy was put on hold due to covid. 
2.  While looking into my neck pain we found a large nodule on my Thyroid.  ultrasound gave me a TIRAD score of 7 points, highly suspicious. Tumor measures 3.5 by 2 by 2 CM.  With lymph node involvement. I Need a biopsy.  Five labs put my requisition in a pile and told me to wait due to covid shut downs. I have a surgeon, but he is at a standstill until I get a biopsy.  
3.  Chest pain / Issues breathing.  Had to visit ER (first time in over 15 years) CT scan revealed several lung nodules.  (This is now where I am internally freaked out.)   The ER doc (thank the Lord for her) saw these and now has sent me to this fast track diagnosis clinic.  
4.  I found a large dark spot (uneven boarders, scaly and itchy) on my back.  Size of my thumbprint.  Referral to dermatologist isn't for another 2 weeks. 

I am thankful that I went to the ER and have now been sent to this GIMRAC clinic.  I would like to be prepared as possible.  I am lost for words, as I have gone YEARS without any real heath problems.  I had cervical cancer in 2000, but was caught early and treated without incident.  I don't know if all these things are separate issues, or if one thing has spread and caused the others.  So many unanswered questions, and it is the worst time ever!  I know only the upcoming tests and biopsies will tell.  My ask of this post is what more can I do to help my situation?  For two months now my body has been telling me something is wrong.  I have nothing but closed doors and rejected biopsy requisitions.  Any suggestions to help me would be appreciated.

Thank you!
Teresa
 

Re: Advice and Information please!

Posted by Wendy Tea on Apr 19, 2020 10:29 am

THawk‍  Hi Teresa, welcome. Having several issues and covid-19 in the community,  seems so surreal.  Your head must be spinning. The world has become a terrifying place and now the word cancer creeps in.
It sounds like you will have to be your own advocate.  I felt it was important that my medical team worked together.  Having separate teams working on separate issues doesn't always work.  Thankfully with all medical files on line, everyone can see your prognosis and proposed treatments. It is possible your surgeon can put a priority tag on your biopsy. Do your best to make that happen. I dont think it is unreasonable to check in with your team when they dont contact you. 
Please stay in touch. We are all here for you.
 
Healing takes time and opportunity. Wendy Tea

Re: Advice and Information please!

Posted by cancertakesflight on Apr 19, 2020 11:28 am

THawk‍ Like you, I have several health issues going on at the same time as my breast cancer diagnosis. I found that not all doctors play well with each other. Ironically, the cancer treatments were okay for me to handle; however, it was my epilepsy that was the biggest problem and my one oncologist would not buy into the fact that the chemo was affecting my head.

Looking back, I'm not quite sure what I could have done differently, but, as Wendy Tea‍ said, you do have to advocate for yourself. I understand that COVID-19 is causing problems on so many levels, but I'm concerned that your requisition is being viewed on its own when really it needs to be viewed in conjunction with everything else. I believe you are going to have to herd your doctors (sometimes like herding cats) and make sure that each one is aware of the other issues and other requisitions. I would hope that they can update their requisitions to make sure that it is a combined view that is determining if your requisition gets put in a pile or gets taken care of right away. I would do the same for the appointment with a dermatologist. Perhaps if all components were looked at as one, things might go faster, but two weeks doesn't seem to be too bad, not like the months that you sometimes wait to see some specialists. 

Having said that I would make sure that all the issues are viewed as one, I'm not saying they are connected, only the results of your tests will be able to give you that answer. I'm just saying, since there is the potential that they are connected that decisions about when to take action needs to look at all aspects of your health.

Please keep us posted and take care of yourself, both physically and emotionally. 

cancertakesflight
 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Advice and Information please!

Posted by Kims1961 on Apr 19, 2020 11:51 am

THawk‍  Glad you posted.  Such a challenging time to be in , but even prior to COVID, i found i really had to take charge of my own health.

Your post was very well organized.  If you can note down all of your concerns in a notebook/journal that you can take to your appt. that will probably help your medical team. The more accurate info. you can have the better.  For instance, I have struggled with high blood pressure -so for a month, I wrote down my  bp - morning and night - on a calendar.  Although, there could be discrepancies between my BP monitor and the Dr's - it at least gave them an idea of trends.  Maybe if there was a way to really organize your concerns and prioritize them.  

It does feel a little surreal, when we get referred to different people.  At my cancer centre, they had tumour boards, where a number of professionals gather and review the cancer cases.  It might be worth asking if your situation would be referred to something similar?

cancertakesflight‍ and Wendy Tea‍  gave some great advice as well.  Please keep us posted.  Kim

 
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Advice and Information please!

Posted by jorola on Apr 19, 2020 7:25 pm

Hello THawk
I wish  this COVIID-19 crap was over. I can understand your concern of wanting to to get the testing done right away. The only idea I have is to contact the patient advocate of the hospital of where you are to have your tests at. Maybe exceptions are being made in certain circumstances?
I did want to leave you with some information on lung nodules that may help ease some anxiety/concern for you. Lung nodules are more common than you think. They are caused by a variety things and not just cancer. I have copied this from the Cleveland Clinic, one of the top hospitals in the US. They explain nodules very well:

What causes pulmonary nodules?

There are two main types of pulmonary nodules: malignant (cancerous) and benign (noncancerous). Over 90% of pulmonary nodules that are smaller than two centimeters (around 3/4 inch) in diameter are benign.

Benign pulmonary nodules can have a wide variety of causes. Many are the result of inflammation in the lung as a result of an infection or disease producing inflammation in the body. The nodule may represent an active process or be the result of scar tissue formation related to prior inflammation. Benign developmental lesions may also appear as nodules.

  • Infections— Most infections that appear as with pulmonary nodules are relatively indolent and often not active. Examples include mycobacterium such as mycobacterium tuberculosis or mycobacterium avium intracellulare, and fungal infections such as aspergillosis, histoplasmosis, coccidiomycosis, and cryptococcosis. Inflammation related to infections often forms what is termed a granuloma. A granuloma is a small clump of cells that form when lung tissue becomes inflamed. Granulomas form when the immune system isolates substances that it considers foreign. Most of the time granulomas occur in the lungs, but they may also form in other parts of the body. They can become calcified over time, as calcium tends to collect in the healing tissue
  • Noninfectious causes of benign inflammatory lung nodules—Noninfectious disorders such as sarcoidosis, granulomatosis with polyangiitis (GPA), and rheumatoid arthritis also show themselves with granulomas forming in the lungs
  • Neoplasms—Neoplasms are abnormal growths that may be benign or malignant.
As you say, you need a biopsy. Biopsies are the only way to confirm the presence of cancer. I hope that your situation can be addressed as soon as possible.
Please keep in touch and let us know how things go.
Live, Laugh, Love

Re: Advice and Information please!

Posted by THawk on Apr 19, 2020 9:36 pm

Thank you all for your kind words and advice.  I am so looking forward to this being over, but yet my journey has not even started.  I truly hope to get some answers this Friday.  I will keep you posted.  

Re: Advice and Information please!

Posted by THawk on Apr 20, 2020 7:21 am

jorola,
Thank you for the positive note on multiple lung nodules.  When I did a search on multiple lung nodules ,it  was highly probable of these being a metastasis of primary cancer somewhere else in the body.  I try not to DR. Google things, but I still need to be educated and informed about my health issues. Similar to  my thyroid nodule, given the TIRAD score of 7, the percentage of malignancy is fairly high (95%) based on several clinical studies.  I will be calling the hospital records department today to request my CT scan, as I forgot while I was in the ER.  I would like to be informed as to how many, the size and location of these.  I hate flying blind, and all I can do to help myself is to be well informed about my health.  

Teresa

Re: Advice and Information please!

Posted by THawk on Apr 20, 2020 3:04 pm

They moved my appointment to Wednesday!  This is a first!  I will be sure to update.  I am hopeful for once!
 

Re: Advice and Information please!

Posted by Wendy Tea on Apr 20, 2020 3:09 pm

THawk‍  Wonderful news! Yes, stay in touch please!
Healing takes time and opportunity. Wendy Tea

Re: Advice and Information please!

Posted by jorola on Apr 20, 2020 7:48 pm

Awesome news THawk‍ I can completely understand. I hate to fly blind as well. Hopefully you will get some answers soon. While I get that the odds may be not on your side, never lose hope. I know that is especially hard when the world is already under so much stress but good things still can happen. I wish you nothing but the best results. Looking forward to hearing back from you when you get them. 
Live, Laugh, Love

Re: Advice and Information please!

Posted by THawk on Apr 22, 2020 5:07 pm

Just a little update here.  I met with the doctor today with the fast track diagnostic clinic.  What an amazing doctor.  She faxed some new meds to my pharmacy - I can breathe!  Then referred me to a respiratory specialist to conduct further testing on my lung nodules.  Also, she was able to schedule me in for my thyroid biopsy this Friday!  This has been a great day.  I also have an appointment with a breast surgeon on Tuesday.  Things are finally moving along!
 

Re: Advice and Information please!

Posted by Wendy Tea on Apr 22, 2020 5:10 pm

THawk‍  Ok can you see me doing the happy dance? I am so happy for you!  Thank you! We all need to hear great news!
Healing takes time and opportunity. Wendy Tea

Re: Advice and Information please!

Posted by Lianne_adminCCS on Apr 22, 2020 6:48 pm

THawk‍ 

Wow - when you  ( and that doctor ) get things done, you REALLY get things done!
So happy to hear you are being listened to and attended to.

Please keep us posted.

Lianne

Re: Advice and Information please!

Posted by Kims1961 on Apr 22, 2020 8:12 pm

THawk‍  Great update!!  This is wonderful news.  It seems once you make that connection, the doctors really take you on as their patient and can often make things happen.  

Keep us posted on how things go this week!  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Advice and Information please!

Posted by Jack80 on Apr 26, 2020 11:58 am

How is everything these days ? Hope you have positive news 

Re: Advice and Information please!

Posted by THawk on Apr 26, 2020 12:48 pm

I had my biopsy on Friday, so I'm sure it will be a few days until I get the results.  I hope to have a diagnoses and treatment plan for everything within the next two weeks.  I will certainly keep you posted, thank you for asking!  In the meantime I struggle day to day with some discomfort and pain.  But all things said I am so happy to see some headway towards treatment. 

Re: Advice and Information please!

Posted by Kims1961 on Apr 26, 2020 4:07 pm

THawk‍   thanks for the update!!  Do you have an appt. this Tuesday as well?

Hope the discomfort isn't too painful.  Nice to have that hurdle -jumped!

Take care, Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Advice and Information please!

Posted by THawk on Apr 26, 2020 4:56 pm

Yes, this tuesday I have my appointment with the breast surgeon this tuesday.  

Re: Advice and Information please!

Posted by Lianne_adminCCS on Apr 28, 2020 11:50 am

THawk‍ 
Thinking of you today. Let us know how it goes when you are able

Take care
Lianne

Re: Advice and Information please!

Posted by THawk on May 2, 2020 6:29 am

First of all I want to say how lovely everyone is on this site.  It is truly more about support and info rather then some of these complaining threads I see elsewhere.  Only a small update for me this week.  I have not received my thyroid biopsy results as of yet.  I have a follow up appointment on Tuesday with the Dr. that ordered it, so I truly hope to hear then.  I met with the breast surgeon and the lung specialist this week.  Everything is pending on this biopsy result.  Breast surgeon was extremely helpful and caring, even gave me his email!  Unfortunately with breast problems surrounding implants, unless there is certainty (ability to do fine needle biopsy and get results indicating lymphoma) that it is cancer, it is treated as an elective procedure - that I have to pay for.  Now seeing that the implant is recalled, he will take it out for free.  SO, long story short I will have to go back to the original surgeon and get them removed.  
Regarding my lung issues, until I have a confirmed diagnosis, they will only follow up in 8-12 months regarding the lung nodules.  In the meantime, we have adjusted my meds and I am able to breathe better day to day.  
Not a total update, but it seems I have made some progress.  I am struggling with anxiety and discomfort most days, but refuse the meds that my doc gave me.. I don't like taking anything to mask problems, I would rather get to the root of the problem.  My husband bought me CBD oil, which I was hesitant to try, but it truly helps. I feel regardless of my biopsy results, I will need both of these surgeries, thyroid and explant, before I am through these problems.   
It also really helps to reach out to others, so I thank you for listening and helping me.   

Teresa

Re: Advice and Information please!

Posted by THawk on May 2, 2020 6:34 am

oh- Forgot to mention, met with the dermatologist for "my ugly spot".  He is certain it is seborrheic keratosis.  A benign spot that needs to be burned off, but harmless.  Just annoying and itchy.  BUT he said it would be $400! HA HA no thanks.  My girlfriend goes to another dermatologist and gets several done at once for $100.  Regardless, I can take this off my list of things to worry about! 

Re: Advice and Information please!

Posted by Lianne_adminCCS on May 2, 2020 1:14 pm

Hello THawk‍  Teresa

thanks for circling back and updating us. I would say it is indeed a pretty good update and that you seemed to have gotten  a fair bit of progress with all these concerns. That would be impressive at any time but especially now with people having so many delays due to the virus.

Sending good vibes for your Tuesday appointment - let us know how you make out

Lianne

Re: Advice and Information please!

Posted by THawk on May 15, 2020 7:56 am

An unfortunate turn of events this week.  I had to go to the ER with severe ear / jaw pain on  my left side.  I had mentioned to my surgeon over the past month or so that my ears and jaw were hurting.  It was more of an ache that would come and go.  My GP said that I was clenching and nervous and that I should meditate and wear my night guard.  Well on Wednesday it went from an ache to a full on stabbing and acute sharp pain.  It stopped me in my tracks, and brought tears to my eyes.  Long story short, the ER doc pulled up my CT and then consulted with an ENT.  They told me that my tumor has most likely infiltrated my laryngeal nerve, and that the pain is being referred up to my ear and jaw.  I am in so much pain.  The last two nights I wake as soon as the Advil has worn off.  The surgeons office told me that the OR's are now open, and I will be booked in soon.  I am scared for my surgery now as there is a huge change that I will never be able to speak again. I have also had to go on short term leave from work as the pain is too intense.  I haven't told any of my friends yet as I feel like I only ever have bad news... I am seriously struggling, without Advil I am in tears with the pain.  I daydream amongst the pain of running my marathon, and getting back info my fitness routines and feeling great on a beach somewhere.  It is the only thing that keeps me hopeful.  

Re: Advice and Information please!

Posted by Lianne_adminCCS on May 15, 2020 3:03 pm

Oh my goodness THawk‍ . Never a dull moment eh? I am so sorry to hear how much pain you are in. Does your medical team know that the Advil is not really cutting it for you?  Maybe they can make some pain med adjustments?
What all will they be doing in your surgery? 
Having those fitness and beach goals are a good thing. Keep your eye on the prize.

Thank you for the update. Please continue to keep us posted as you are able.

Take care
Lianne

Re: Advice and Information please!

Posted by Kims1961 on May 15, 2020 3:25 pm

THawk‍  I echo Lianne_adminCCS‍ ...never a dull moment!

For a while it seemed during my cancer treatment , I was just getting "bad" news.  It was a little discouraging at first and people would ask with hope in their voices -how are things? - and i didn't really want to say.  I found it was neither good nor bad - just was - it was part of my cancer story and that treatment and recovery isn't always just a simple straight line.

This pain you are having sounds so BRUTAL!!!  I'm glad Advil is taking the edge off, even if not long enough.  Sounds like CBD is helping.  If things don't improve it might be worth checking in with your doctor again.  If he has prescribed some meds that you are concerned about it might be worth a conversation about your concerns.  During chemo, i was prescribed percocets, which i was adamant i would not take - until the pain became so bad.  I didn't want to be "addicted' to them - so chatted with my doctors about my concerns. Some meds for pain/anxiety/ - can be very short term.  Just to get us over that "hump".

Having a leave from work right now, sounds like a good idea.  Hopefully you can rest when you can, build your reserves. If pain is managed, can you get outside at all?  The outdoors can be wonderful therapy - if for a run, a walk or a easy stroll.

Thank you for updating us.  Hope you hear from the surgeon soon.  We are here.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom