New Path report--, my cancer is back again, at Primary site.

Specimen InformationBlock Tested: WFS22-01958 A1

Tissue Source: RIGHT TONSIL

Diagnosis:  Invasive moderately differentiated keratinizing squamous cell carcinoma

% Tumor: 80%

HPV TYPE 16NegativeNegativeHPV TYPE 18NegativeNegativeHPV OTHER HIGH RISK TYPENegativeNegativeHPV COMMENTOther High Risk HPV types tested for include 31, 33, 35, 39, 45, 51, 52, 56, 58, 59, 66 and 68.

Hi Russ,

Unfortunately no, its not small. This one is large enough that if I go with surgery, he said it requires another Free Flap, ...that means he has to find a place to harvest that from, on my bony 70 pound frame. He said I would also require another Tracheostomy.

He also said I would contract a severe pneumonia afterward, likely doing me in. There is no escaping that my lungs are now permanently damaged and are, as I write this not clear. Not clear. I do my Vest airway clearance treatment, plus nebulizing 2 drugs, daily.

This from his clinic notes on day of biopsy::

Right soft palate has an ulcerative lesion, 1.5 cm.

Okay, of course its not as large, yet, as my Primary tumor was --- actual tumor size was 6.3 Centimeters by 3.0 centimeters by 2.2 centimeter thick. 😲 That was the monster tumor which started this nightmare.. It had been growing for Years, they said.

This new one, at the primary site---1.5 centimeters is just from him looking at it Monday in clinic when he did the biopsies. He Measured it as well. We do not know anything else but my "PET with infusion Head & Neck Cancer", is next week. Then we will see more. Hoping no metastatic disease.

Immunotherapy is a touchy subject, because remember, I was born with an incomplete immune system. Its a huge problem. See, immunotherapy harnesses ones Lymphocytes. That's what makes it work. Well, Crystal is very imnunodeficient. In fact, my Lymphocyte Count is LOW, and my Percentage of lymphocytes is very Low. My Medical Oncologist talked to me in depth all about this in 2017.

I'm too tired ( sorry!) to continue... But I will be meeting with my MO and my R O, soon to go over options and to talk about my condition. I do have a Palliative Care team, and might have to go that route, if its decided I'm not fit enough for treatment.

I do know that they do not want to try $100,000 of immunotherapy agents, on a patient with not enough lymphocytes to make it work . I gotta look at my reality.

We'll see. 🤔

Crystal

To the discussion board, I know its been a little while since I posted so here I am again.

I was Wrong. This cancer is Not a recurrence. Rather, its a New Primary head & neck cancer. In same places which were invaded by my first head & neck cancer AND, its all been previously thoroughly irradiated. 66 Gy in 2018.

My R O told me point blank that to do Re Irradiation of these same areas Can Kill Me.

Yesterday I saw my Medical Oncologist. She has ordered More scans, because the results of my PET were not clear enough. So, Tuesday March 1st I go for CT head/ neck with Intravenous contrast.The PET ( which she isn't satisfied with) showed Malignancy scattered about.... Also it showed FDG Acidity in both my lungs. My right lung showed mucous plugging in middle lobe and behind that area, my right lung has Collapsed. My Pulmonary doctor said that lung has Shrunk, from the collapse. Both lung bases showing Pneumonia . pneumonia both lungs, still.

Okay, my Medical Oncologist also did my Labs and I had to sign forms so she could send off Liquid Biopsies of my Blood, to FoundationOne CDx. This is the Genomics Sequencing company which analyzed one of my large solid tumors in 2017. Looking for genomic markers that match for any current targeted therapies, etc.

Okay, what about Immunothrrapy? Well, she is very very Fearful that any Immunotherapy agent would attack the lining of my lungs, causing Pneumonitis ( and thus my death, because of existing conditions already in my lungs). If you read the Side Effects of Keytruda, for example, you will read about pneumonitis as an adverse event.

Bottom line, they have not decided yet because they are wanting alternatives to Re Irradiating me, to same tissues ( Just imagine that, guys. Getting radiated twice to same area. I know someone here is still alive, who had it...) And they want another, better scan which I get Tuesday.

How am I ? Well, with collapsed lung, pneumonia ... And new cancer trying to strangle me in my throat not doing well. Its growing ...and my Labs told the tale. ..😔.

Anyway, I'm pasting below a couple parts of the Clinic Notes from my Radiation Oncologist, over a week ago so you can read about the Extent of this new Primary cancer.

This is a hard post, because I know my hell s just beginning again, all over again. I am 70 pounds with my clothes on. Weak. Not ready for this again.

ATTENDING ATTESTATION - CONSULTATION AND FOLLOW UP NOTES:

XRT = radiation therapy

I saw Crystal Jeanette Smith with Dr Steber and agree with his assessment and plan.

Ms Smith returns today at the request of Dr Browne to discuss management options for a new cancer of the right soft palate and tonsil.

Previous XRT history: 02/07/18 – 03/23/18

66 Gy targeting left posterior oral tongue/base of tongue and bilateral neck

right soft palate/tonsil area received 38.5 Gy – 48 Gy

ROS: pain in right throat and left ear pain since last Summer '21; lump in the remnant tongue

Exam:

Malignant appearing mucosa involving the entire right tonsil region as well as the entire soft palate with possible extension onto the remnant native tongue on the left posterior side

Pathology: 02/10/22

RIGHT TONSIL, BIOPSY: Squamous cell carcinoma.

Imaging: PET/C

h/o multiple OC cancers and previous XRT to this general area...

Recommendations:

I shared with Crystal Jeanette Smith that there are 2 options for her cancer:

1 surgery – this will lead to some disfigurement within the 'mouth' area and further functional impairment.

2 XRT – this will minimize tissue loss and functional impairment but will come at the risk of retreatment injury which could include death of tissue/ death of person

We discussed the XRT option with Crystal Jeanette Smith in detail and she had opportunity to ask questions.

At this point, I recommended we await the results of her PET/CT scheduled for tomorrow. I will then discuss the findings with Drs Browne and Porosnicu and collectively, we will be able to make a final management recommendation to Ms Smith.

She was agreeable to this recommendation.

----------------------------

Assessment: New primary of the head and neck, incompletely staged right oropharyngeal squamous cell carcinoma after prior completion of adjuvant radiation therapy for cancer following surgical resection in 2018

Plan:

- Assess PET/CT tomorrow to allow finalized plan

- We discussed the option of re-irradiation for her new diagnosis. If we were to proceed with definitive re-irradiation we would recommend 60 Gy in 30 fractions to the involved sites of disease. Ideally concurrent chemotherapy would be given. Alternatives would be surgical resection or palliative radiation and/or systemic therapy.

- we will follow up with her after her PET/CT and discussion with her surgeon and medical oncologist

Future Appointments

perhaps this question is for me, since it's on my Post ( or maybe it's for Russ?)--------- Regardless, I will go ahead and post my little update:::

I am now down to 67.4 pounds. That's no misprint---- 67.4 pounds.

My Labs are terrible, so immediately they put me on liquid Potassium...maybe IV Red Cells are next. And today is my new CT Neck w/ IV contrast.

that is, if the scanner can detect enough of me on the table, to get the images ..LOL. I

67 pounds, not good.

Thanks to all you ladies and Gents here, expressing care for my continuing fight. Believe me when I say, , it means so very much to me. I will update more later.. Thank you, .. Crystal litldoll