New Path report--, my cancer is back again, at Primary site.
Today, I read the two pathology reports from the Punch biopsies taken Monday, soft palate/ right tonsil.
The tonsil there is gone, as it was invaded by SqCC by my primary tongue tumor. ( see my Profile).
The area has bothered me for months. Of course, I was in the hospital with Double Lung Pneumonia, in June and again October through November. Thus, I kind of ignored it. But then, it became extremely sore to oral hygiene and every single time its touched, it Bleeds. Oh, not just a little bleeding.... I'm talking about blood running down back of my throat.
And very odd looking ... Hmmmm, January 3 rd, I had esophageal dilation and my G I doctor took Photos ( strangely, of a different place he's concerned wiith) and he demanded I get in to see Head & Neck oncology for Biopsies. So I did. My surgeon was very upset. He knew, by looking at it. It has ULCERATED through and that's why its bleeding so. It hurts just to yawn...
By the way, I fall asleep, nod off, all the time. Just exhausted. I have been fighting for years...
I cannot Fight anymore.... I am so weak. I am 70.2 pounds and it won't budge. 70 pounds !! Both my lungs, still not clear. Not clear.....
My oncology surgeon has reached out to my R O, to discuss options...... This is tumor #7 I believe, and its my second one to come up since Radiation. My Second Tumor, since radiation less than 4 years ago.
Invasive, keratinizing Squamous cell carcinoma. Completely negative for all HPV types . Negative for all types, just as all my tumors have been. Very resistant to treatment...
Crystal
Comments
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Specimen: Tonsil biopsy, Right tonsilFinal Pathologic Diagnosis
RIGHT TONSIL, BIOPSY:
Squamous cell carcinoma.
See comment.
CommentThe biopsy demonstrates moderately l differentiated keratinizing squamous cell carcinoma. It is difficult to assess invasion due to tangential sectioning, but the architecture is suspicious for invasion. Immunohistochemical stains for p16 show no diagnostic diffuse or block positive staining (negative). HPV PCR studies reveal no evidence of high risk HPV (negative, see detailed results reported separately). GMS stains reveal no colonizing fungal elements.
Dr. Niehaus reviewed the case for a second opinion and agrees with the diagnosis.
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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.
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Crystal,
Dr Frizzell would be happy to meet with you to discuss radiation options.
Dr Porosnicu ( you've seen her in past) did not rule out immunotherapy as a option.
Surgery from me would require a tracheotomy, resection of the tumor and another free flap. Your lung issues would place you at risk for postop complications like a more serious pneumonia. Nevertheless, that is still a viable option.
Let me know if you'd like us to set up appts to discuss.
Dr.B
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I don't know. This is Year 4 from my Radiation treatments. If you look at my Profile, you will see the first surgery for my Primary, was a massive surgery. Altered my life... Then, many subsequent surgeries for recurrences.
In 2017, they sent one of my base of Tongue tumors to Foundation One, for Genomics sequencing and testing. It showed a poor prognosis, ...Poor response to all known checkpoint inhibitors. No biomarkers for any known targeted drugs...
They said it's an aggressive tumor with poor response to treatment. My gosh, it survived radiation, and keeps coming back. This one, isn't small and it's ulcerated, bleeding. Wish I didn't have to look at it everyday.
Thanks, to you and Logan too.
Crystal
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Crystal, so sorry to see a return of cancer. Hopefully, it is really small yet and not too invasive and they can deal with it somehow. And yes I have heard of a lot of people having very positive results with immunotherapy. All I can say is you certainly have had your share of this evil disease but never let it keep you down.
Wishing You The Best-Take Care-God Bless-Russ
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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
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😪
I have to admit that I have been worried about you, and I hope you share another update to let us all know how you’re doing.
I feel horrible the cancer is back. I kept checking this thread, and for some reason missed there were any updates until today - every time I looked there was no new response. I should have clicked on it before and I am kicking myself now. I wish your lungs would clear up and heal and cancer would go away and leave you ALONE! It’s enough suffering!!
Crystal, please know you are in my thoughts, and have been. I’ve been bugging Russ about you for information :) and immunotherapy may be the answer for you, as Russ stated… especially considering your immune system issues.
-Steph
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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
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Dearest Crystal, your cancer journey doesn't seem to quit. This evil disease just won't let you alone. Of course, I am at a loss for words pretty much. But I can keep some hope in the Genomics thing may find a solution.
You said, "This is a hard post because I know my hell s just beginning again". I am sure it is a hard post as anyone on here that has been through the treatments related to this can attest there is nothing enjoyable about this treatment and you have had a lot of experience with it. And now you face it again and my heart goes out to you as always. We have known each other for a while and I say again we are separated by distance but if there is anything I can do from a distance somehow don't hesitate. Crystal, you are the strongest person I know and no one can match the ferocity you have shown in all your cancer situations. You are faced with decisions that are possibly complicated but you have a sharp analytical mind to deal with them. You know Crystal Many times when I need strength to get through a difficult situation, I’ll think of you for inspiration. I always feel that you have set a wonderful example of how you deal with these cancer situations or any difficult situation for others to follow.
Crystal, you are always here helping others and the CSN H&N group is here for you. Just tell us what you need. In the meantime, I will continue praying for you and you are already on my prayer list.
In the meantime let's hope the doctors and the Genomics people come up with a solution to treat you. Maybe a lighter treatment of a combination of therapies they could try. As you say you have some added health issues with your weight and your lung problems but hopefully you will gain some improvement through the guidance and care of your medical team.
Wishing You The Best-Take Care-God Bless-Russ
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Ditto and echo from me. You are a profile in courage and how to fight on. Thinking of you every day, little doll. 💙
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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
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Hey Crystal/litldoll I am sorry to hear you are losing weight because you don't have any to spare. I know it has been a constant battle to maintain your weight and even gain some. Hopefully, this trend doesn't continue and you are able to get the amount in your feedings they recommend for you to maintain your weight and soon gain some back. I am hoping the liquid potassium bolsters your system and your labs can improve and they have the IV Red cells for a backup plan is hopeful also. Ahhh and today is scan day I am familiar with that I have had more than my share of them. No biggee but as you know, one more appointment. I am hoping and praying for positive results, you need a little good news. Let's shoot for the moon as they say and I will pray for clear scans. Crystal they will get your scans OK they will just have to set their scanner on LitlCJdoll mode. As usual Crystal I am here for ya, praying for ya, and I have an open spot at all times no matter when it is if you need someone to talk to and or you think of anything I can do to help contact me and please don't hesitate, as a fellow survivor I am here for you.
Wishing you the best-Take care-God Bless-Russ
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