New Path report--, my cancer is back again, at Primary site.
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Crystal,
I was so saddened to hear this. You have had the hardest battles of anyone I know, on here!
I know we're all in your corner, and as always, I'm available whenever you want to talk, text or e-mail...
You're an incredible woman, and you always inspire me!
Curt
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Crystal,
I am actually on Potassium as well. Not the liquid, it's a horse pill.
My first surgery to take place for my biopsy had to be canceled because they were scared to put me under. I had to build it back up.
I hope you aren't in pain that they can't control. I also wish you would update us more. But I understand it's not always easy!! I really miss your presence on the forum.
-Steph
P.S. I just had my first checkup after ending my radiation. January 28th was my last day. If you need anything, please don't hesitate to ask. I can ship things to the hospital if you are still in there. If you need anything at home, etc. Please just PM me. I know you do not have a caregiver.
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Dear Stephanie,
Its very sweet and heart warming to hear you offer to help me, with you yourself just recently out of treatment. I know its a miserable time for you and I hope you are still able to eat well, without too much pain and struggle.
I know I should post more but in all honesty, all I have is increasingly bad news and I am about to lay some more on you guys, here.
My weight last night ( I'm at home, dear Steph, for now) is 67.6 pounds. Its been 67 for at least a week.
My Medical Oncologist did not like the "non specific" results we got from the PET ( and to me, it read very oddly. Not sure if it was a new Radiologist or what!)---- anyway, so my doctor ordered a new CT Neck with IV contrast.
To try and nail down where this invasive SCC has spread. The part I can see in back of my throat, changes a lot. Its now on both sides, with very hard areas ( Keratinizing tumor), and ulcerated Holes. My throat opening is Much smaller, which is likely one reason for my weight drop, its becoming more and more difficult to swallow my liquid diet.
In these Notes from the Radiologist, he got a couple things wrong, for instance he mentions that he can see my esophageal Stent. Well, I do not have a Stent. Anywhere! Also, he may not have seen my recent Pathology reports ( which I posted Here, recently!!). Okay, read this ... I had this CT just days ago. It says the oral cavity tumor area, which Enhances on the scan, has now spread to my Epiglottis and my Hypopharynx. and its a Large area . All this has occurred since July, my CT Neck before this one.::
( by the way, my docs say this is not a recurrence. Its a New Primary. The good news is they do not see it in my nodes, my eyes or my brain)
Study Result
Impression
Overall: Category 3 - high suspicion of recurrence.
Primary: Category 3 - high suspicion of recurrence. Large amorphous enhancing soft tissue in the oral cavity extending to the hypopharynx is suspicious for recurrent malignancy which should be amenable to direct inspection. Alternatively, further evaluation can be performed with a repeat PET/CT or tissue sampling for confirmation of recurrence.
Neck: Category 1 - No convincing evidence of recurrence: routine surveillance.
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Narrative
CT NECK/THYROID W CONTRAST, 3/1/2022 3:38 PM
INDICATION: restaging, tongue cancer \ C02.1 Squamous cell carcinoma of lateral tongue (HCC) \ R53.83 Fatigue, unspecified type \ C06.9 Oral cancer (HCC) \ R22.1 Mass of right side of neck
COMPARISON: CT neck 7/12/2021
TECHNIQUE: Axial CT images from the skull base to upper chest were obtained after intravenous administration of iodine-based contrast for the primary purpose of visualizing the soft tissues of the neck. Portions of the brain, face, and cervical spine were also included in the imaging field. Supplemental 2D reformatted images were generated and reviewed as needed.
All CT scans at Atrium Health Wake Forest Baptist and Wake Forest Baptist Imaging are performed using radiation dose optimization techniques as appropriate to a performed exam, including but not limited to one or more of the following: automatic exposure control, adjustment of the mA and/or kV according to patient size, use of iterative reconstruction technique. In addition, our institution participates in a radiation dose monitoring program to optimize patient radiation exposure.
FINDINGS:
Expected post-treatment changes including bilateral neck dissections are noted. The submandibular glands are absent. There is right apical fibrosis likely related to radiation treatment changes. A esophageal stent is in place.
There is amorphous soft tissue in the oral cavity extending to the hypopharynx and epiglottis which has significantly increased since 7/12/2021.
No pathologically enlarged, necrotic, or otherwise abnormal lymph nodes.
Mild scattered paranasal sinus mucosal thickening.
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The next step might be for my #2 Head & Neck doctor to Scope me ( as the Radiologist suggests in the first sentence) and do biopsies? I'm not sure. I had the scan just a couple days ago, so I'm in wait mode.
I see my Medical Oncologist Tuesday .
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I am very sad to hear about your condition. If you need anything, please let me know. You are truly a warrior, and I know with new problems it gets even more difficult to manage. You are one of the worst cases I have read about, and it hurts that your cancer keeps coming back, but am glad you have an excellent oncology team that are working with you.
You will always be in my thoughts and prayers......
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Crystal,
Thank you so much for updating all of us. Sometimes doctors infuriate me. I know they're human and make mistakes, but it just seems like they take on too many patients and rush things. Throughout my treatment, I have literally been asked if I smoked at each appointment! I have told them over and over that, I quit 10 years ago. With you, they thought you had a stent. It's ridiculous.
I just had a checkup yesterday. The nurse had prepared me to get scoped by numbing me. When my Oncologist came in he just talked to me and felt my neck and said everything looked good and wasn't even going to scope me! I had to ASK. He also brought up some other things that were just strange and not necessary. I am fine, and everything is ok. It's just that maybe you should consider seeking out someone else. If you are in NC, what about Duke or Chapel Hill?
I have never had a great feeling about the Oncologists here in Wilmington. They are overwhelmed. We literally have 3 machines that cover the whole of Wilmington, NC. It's crazy. we have Zimmer cancer center, and that's supposed to be good, but that's Chemo. The radiation place is just overwhelmed.
I just worry about you so much and there is no room for mistakes right now. I want you to be okay... I am going to send you a PM. 😓
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Hi Stephanie,
I have been a patient here at Wake Forest University School of Medicine since 1992, when I came here as a rare disease patient ( my immunodeficiency) and then I was under Pediatrics. ( in times past, many children with my immunodeficiency did not make it out of childhood. They died from complications, infections, cancers)...
So, like next week I'm admitted for my regular infusion of Immunoglobulin. It's other people's white blood cells ( just Antibody) and it's infused into me over several hours. It's usually an all day in the hospital. No one takes me, nor picks me up. I do it myself. For over 30 Years I have done these infusions Every 28 Days. Every 28 Days...
Okay, this Year, in November marks my 30 th Year as a patient here at Wake Forest . We used to be called the Bowman Gray School of Medicine.
Also, we are one of 46 Comprehensive Cancer Centers in the nation. Also, Stephan ie, we are the #1 Ranked Cancer Center in North Carolina. We are ranked Ahead of Duke and Chapel Hill. Yes, we are.
I was going to Duke years ago for my esophageal proplems... I've been to Cleveland Clinic foundation too, and others as a child. Big research centers, because of my rare immunodeficiency.
I am very at home at Wake Forest and here I am at 30 years here, everyone knows me. We are like family. This hospital and the School of Medicine has been in existence for over 125 years now. It's also a Level 1 Trauma center... A nursing school... Research center, etc.
I live just 3.1 miles, from this Medical Center !! I could walk to it, if I had too!
Crystal
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Dear Susan,
Wow, girl---- it's been a long time!! How are You doing? Did you get well acclimated to the Tracheotomy ?
Just a couple weeks ago, my Pulmonary doctor told me, on a mail, that it might be time for me to g st another one, permanently. But my Oncology surgeon said " Nah, you don't need one right now".
LOL!
Thank you so much, really and truly, for writing me. I've actually been sick since last night. A little better now with lots of Fluids going in.
I am going to private message you when I can because you have experience, in what my Pulmonary doctor was telling me about getting another Trach.
Tuesday I see my M O in clinic, and will see what my. Fate is ( the treatment plan).. And whether my blood biopsy has resulted from the Genomics lab, Foundation One CDx company. It's just hard to think about going through Any treatment again, at my weight and w/ lung disease, etc. How in the world can I do it ? I guess I could go out like Randal did---- he never stopped treatment, 9 years, 2 different cancers.
gotta weigh options. Risks versus benefit, you know.
Crystal
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Hi Crystal,
So good to hear from you! Treatments when you are underweight and weak will definitely be difficult. But Randall fought hard, and so can you! I have confidence you can beat this cancer. We truly find strength when we have too.
I have gotten use to my permanent trach, but not super easy of course. It has its good benefits, and drawbacks. The mucus is the worst part to manage. Quite often my stoma gets abraised skin and bleeds. Then I have blood dripping down my neck. My ENT prescribed these wonderful "pads" I put underneath my trach. That stopped the bleeding. It lifts the flange up to where it's not putting pressure on your neck.
Well, don't want to put you to sleep with my rambling. I will answer your questions if I can.
Susan
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- Dr. Frizzell ,
- Could you please have Wendy Watson contact me? She has dropped off my provider list and I cannot reach her ..
- I'm having major problems. My weight has dropped now to 67.6 pounds. My Soft Palate area is swelled and Deformed, and my Swallow is very difficult and AR times impossible. My Uvula soft palate is not closing off my nasal passages . hen I swallow, thus I get liquids Pouring Out of my nose when trying to do my oral intake. It happened all day yesterday and last night.
- Looking in my back of my throat with a flashlight, I cannot even see the opening to my throart. I handed the flashlight to my mother to look and she said " my god, its all closed over!!" She's distressed about it.I am weak... She told me I look just exhausted.
- Right now, I am SYRINGING my cream soup, ccofee, milk----- through my G tube. I don't know what else to do. My sinuses/ head / throat, painful. Trying to swallow, I cough a lot.... I am still trying to SIP my liquids today, even as I tube the rest of it. Just trying to see what's going on. I need the calories in my stomach, not out my nose !! 67 pounds... I am WEAK, trying to keep up KY hydration. Just have Wendy write ne. By the way, My Voice Is Also GONE. There is no understanding me now. I can't even force it. Crystal
- PS:: now I'm up at 3:30am with Nose bleeds, and had nausea.
- Last viewed by staff 7:18 AM
- Bart Alan Frizzell, MD
- 7:40 AM
- I noticed you have an appointment with Dr Porosnicu tomorrow.
- Can I ask Wendy to see you then? It will give her time to get anything ready that she feels will be helpful.
- I received a message from Dr Browne. Based on the CT scan last week, he does not think surgery is a reasonable idea.
- Options at this point become non-surgical. Since talking is not possible for you currently, I wanted to lay out some options for you to consider before seeing Dr Porosnicu tomorrow. Hopefully, that allows you to make a treatment decision at that time and allow everything to move forward quickly.
- Option 1 - full course radiation therapy
- This would require treating the back of your tongue, throat and voice box for 6 weeks.
- Advantage - best chance for long term control
- Disadvantage - two
- (1) this would be very rough treatment. It would cause severe throat pain, weakness and fatigue
- (2) pathology report indicates that this cancer isn't virus driven which means it most likely will be less responsive to radiation and thus cure will be a long shot
- Option 2 - short course radiation therapy
- This would consist of 2 days of radiation where you would receive 2 treatments a day - treatments given 6 hours apart on each day
- Advantage - minimal side effects
- Disadvantage - this treatment would be designed to slow the cancer growth but would not be considered curative
- Option 3 - immunotherapy
- This is the option that Dr Porosnicu discussed with you previously. I think she shared her concerns with you at your last visit.
- This treatment could also be given with the short course radiation mentioned in Option 2 above
- Option 4 - comfort care
- Since cure will be a long shot, this option would focus on keeping you comfortable and avoiding treatments with higher risk of causing significant side effects. This option could include the short course radiation mentioned in Option 2 above.
- I know this is a lot for a e-mail but I wanted to give you as much info as possible before you see Dr Porosnicu tomorrow.
- Once you see her, Dr Porosnicu can call me with a final plan and I am ready to help if radiation is a part of that plan.
- BF
- C
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Dearest Crystal so sorry to hear the latest news. These times make for hard words. I am sure the group will support you in love and prayer. I pray for your strength and stamina and for you in the decisions you have to make. Also prayers for your mother and family. I will be with you in thought and prayer-Take Care-God Bless-Russ
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Thank you, Russ. And also thank you Don! Don, its great to hear from you, early, late, or anytime at all! I welcome hearing from you and thank you for urging me to Fight. That means a lot !
Here below is my surgeon, from this morning. After he read my CT Neck:: ( also, keep in mind I had the Full Course of IMRT Radiotherapy in early 2018. 66 Gy to my head & neck, 33 days)
Hey Crystal, I was out and am seeing your emails.
I looked at your CT scan and the tumor extends along the side of your throat and upper voice box; certainly it is involving your palate.
Due to the changes from your past therapies, the exact extent is hard to see--even for our radiologists.
I fear surgery would be too debilitating. I'm going to reach out to Dr Porosnicu--she was waiting on scans and opinions. .
J. Dale Browne MD FACS
Department of Otolaryngology-Head and Neck Surgery
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Hi Crystal,
I know this can all be overwhelming. I admire your courage and determination. You have battled through the tough times this far. Please don't lose your faith, God has the power to be there with you, and give you strength. When I was going through radiation treatments, it was very tough for me since I am claustrophobic. The medicine they gave me did not help me to relax. I was so sad and scared. I drove myself back and forth to treatments, with no support team. One of my coworkers gave me a small silver medal with the Guardian angel on it. I could not put it in my hand when getting treatments, but feel it helped get me through. My thoughts and prayers are with you. Remember keep saying your prayers, God does hear you.
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Crystal,
I will echo what others have said. Please know we are all here for you. Everyone I've seen on the forum is praying for you and thinking about you. I hope that it makes you feel better to know you have all of our support. It's unwavering.
Now I must catch up and read your latest update.
-Steph
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