Shocking result

ali90h7 · November 2023

After radiotherapy, unfortunately, the examination showed a significant increase in the size of the tumor (3.4 cm).

Since February, when the tumor appeared, it was 1.9 cm in size. After chemotherapy, it became 1.1 cm in size. After that, I underwent 33 radiation sessions, and I was surprised by the increase in size.

I was honestly shocked.

There is also narrowing of the pharynx.

( Status post tracheostomy, total laryngectomy and right hemithyroidectomy on 02/08/2022. There is interval increase in size and FDG uptake of the left submandibular soft tissue mass, now measuring 3.4 x 2.2 cm with SUVmax 7.5, with significant oropharyngeal narrowing, previously measuring up to 1.3 cm with SUVmax 5.3 .

Focal increased radiotracer uptake in the left mandibular region with an SUV-max of 5.5 corresponding to soft tissue density inseparable from the soft tissue mass . This lesion could be related to metastatic lymph node. To be correlated to ultrasound or MRI.

There is normal homogeneous attenuation of the left hemi thyroid, with no abnormal FDG uptake. Persistent mildly increased focal FDG uptake in the proximal esophagus, likely reactive. The brain is normal on the non-contrast CT scan with no hypermetabolic foci exceeding the normal cerebral cortex. )

Tomorrow I have an appointment with the oncologist to see what options I have remaining.

I see that things are heading for the worse😔

wbcgaruss · November 2023

Ali, my prayers are with you. I am sorry it turned out like this. I am shocked also, I have not heard before of an increase in tumor size after radiation. This usually reduces them in size, or at least holds them back from growing which buys time to consider what to do next, it's hard to understand. Maybe the appt. with the oncologist can shed some light on this. Has immunotherapy been considered, or any clinical trials, ask the oncologist if this is an option.

Depending on the outcome of your meeting you may want to consider Palliative care or Hospice care taking into all consideration of your dad's situation. Below is a link to some information on it.

https://www.verywellhealth.com/palliative-care-vs-hospice-7090656

https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/hospice-vs-palliative-care-whats-the-difference

Again I am sorry you didn't get a better report, you are in my prayers for decision making and moving forward.

Take care, God Bless

Russ

ali90h7 · November 2023

https://csn.cancer.org/discussion/comment/1710334#Comment_1710334

Thanks Russ for the support.

Indeed, it is strange. I do not know how the cells were able to grow despite being exposed to radiation.

When the doctor told me, and until now I have not realized the amount of increase in size, as it reached 2.5 cm, and this is a terrible thing.

I hope to find here some cases similar to my father's to see what they did and how they managed. Also, I will hear from the oncologist tomorrow.

I have a question, if you know the answer

who is the specialist doctor responsible for doing PEG? Is he a gastrointestinal surgeon?

wbcgaruss · November 2023

Very well Ali hope for the best.

Yes for PEG tube it is the gastrointestinal doctor.

I also Private Messaged you some info.

Take care, God Bless

Russ

gungadinn1997 · November 2023

Ali, you didn't say whether your father's cancer is hpv+. It is a miserable beast. I wish you and your father well on this journey.

I've been lurking and reading for months but only now felt the need to post. This cancer hides. It rears its ugly head when least expected. It is very difficult to find many stories on recurrent head and neck cancer.

Someday I will share the miserable journey we've been on.

Best of luck to you!

Kim

gungadinn1997 · November 2023

I also wanted to say that the swelling on the opposite side of the neck is probably due to the radiation. Typically they radiate the lymph nodes on both sides to try to prevent it metastasizing.

Kim

wbcgaruss · November 2023

Hello CSN folks, I had sent Ali a private message but would like to post it here. It is about some options that are not necessarily endorsed by the medical community but they are not expensive and when all else fails you really can't lose by trying something different.

Ali I just want to share some information on cancer treatment.

There is a guy named Joe Tippens who has this amazing cancer story and recovery.

This is controversial and not backed by the medical field but for me if all the standard treatment is not working I would be willing to try it.

Here is a link to it and a link to the posting I made on CSN.

The Blog – Get Busy Living

https://csn.cancer.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Fmycancerstory.rocks%2Fthe-blog%2F

Attitude is Everything has always been my mantra. It seems that the more troublesome an event or challenge I’ve faced, my natural defense mechanism (that I attribute to my parents, siblings and friends) is to use positive thinking as the kick starter and humor as the mechanism to power through the adversity.

CSN Posting...

https://csn.cancer.org/discussion/326703/joe-tippen-cancer-story-recently-shared-with-me-for-your-consideration

Also, there has been a lot of talk about Ivermectin lately and it has come to light that it has cancer-treating properties so I did a search, and here is the search link...

https://www.google.com/search?client=firefox-b-1-d&q=cancer+and+ivermection

I did some reading on Ivermectin and cancer treatment and in many cases, it is not Ivermectin alone that fights cancer but it is when it is used in conjunction with another drug. Just do some searching around on "Ivermectin and Cancer" there is lots of information on it but I don't see it taking center stage anytime soon in the battle against cancer but it looks like it could be another tool in the anti-cancer box.

https://i2b.us/anti-parasite-drug-ivermectin-shows-promise-against-cancer/

Praying for you in this difficult decision-making time.

Take Care, God Bless

Russ

ali90h7 · November 2023

Today, my appointment with the oncologist was disappointing. He confirmed the increase in size and narrowing of the pharynx. He offered me the option of trying chemotherapy with immunotherapy together. He mentioned that there are some experiments that have proven the effectiveness of this treatment. Cisplatin and 5-FU with pembrolizumab 200 mg every 21 days for three months.

I have not decided yet, as far as I know, pembrolizumab 200 mg treatment is expensive.

I ask you if you know of specialized cancer centers that offer a second opinion remotely. I thought I would listen to more than one opinion.

Thank you all

gungadinn1997 · November 2023

Hi Ali, I'm sorry to hear that news. Would they be treating to cure or just to give him more time? That would factor in hugely for me as to my decision. Best of luck.

Kim

wbcgaruss · November 2023

Ali, I don't know your location but just do a search on the net with the words "specialized cancer centers".

Or add United States to it "specialized cancer centers united states"

You will get lots of results.

Also try a search using your area such as "Major cancer centers in Texas."

I can't post search links here because the site security rejects them but I will try to put a couple below.

Find a Cancer Center

NCI-Designated Cancer Centers deliver cutting-edge cancer treatments to patients in communities across the United States. Find a center near you and learn about its specific research capabilities, programs, and initiatives.

https://www.cancer.gov/research/infrastructure/cancer-centers/find

Search results...specialized cancer centers united states

https://www.google.com/search?q=specialized+cancer+centers+united+states&client=firefox-b-1-d&sca_esv=580550388&ei=MtRLZfLqB-Ws1QHMzKrQBg&ved=0ahUKEwjyy-f0hLWCAxVlVjUKHUymCmoQ4dUDCA8&uact=5&oq=specialized+cancer+centers+united+states&gs_lp=Egxnd3Mtd2l6LXNlcnAiKHNwZWNpYWxpemVkIGNhbmNlciBjZW50ZXJzIHVuaXRlZCBzdGF0ZXMyBRAhGKABMgUQIRigATIFECEYqwIyBRAhGKsCMggQIRgWGB4YHUjWWVD9GFiRVnABeAGQAQCYAcEBoAHuEKoBBDAuMTS4AQPIAQD4AQHCAgoQABhHGNYEGLADwgIGEAAYFhgewgIKEAAYFhgeGA8YCsICCBAAGIoFGIYD4gMEGAAgQYgGAZAGCA&sclient=gws-wiz-serp#ip=1

Best Hospitals for Cancer

https://health.usnews.com/best-hospitals/rankings/cancer

I hope this helps.

Wishing You the Best

Take care, God Bless

Russ

ali90h7 · November 2023

Hello, I will surprise you with the result of the MRI report.

Most developments on the left side of the neck are side effects of radiation therapy, most of which are fluid edema.

I also showed the PET CT scan report to two oncologists who were not very convinced by what was stated in the report.

Their conclusion, according to the MRI report, was that the radiation burns the cells, which causes them to swell, and because of the swelling, the size can increase, and this is what is medically called false relapse.

It is possible that the patient needs some time to re-evaluate.

You should read the MRI report I have attached for you

‏لقطة الشاشة 2023-11-12 في 12.19.03 م.png

ali90h7 · November 2023

https://csn.cancer.org/discussion/comment/1710375#Comment_1710375

According to what doctors said, combining chemotherapy with immunotherapy showed good responses in reducing the size of the tumor, controlling it, and in some cases eliminating it.

wbcgaruss · November 2023

Ali I hope I am reading this correctly, and I am no expert but if I am correct there is no cancer just post-treatment effects. That's what I see in the report "The differential diagnosis includes post-treatment changes versus recurrent tumor"

Have you talked to the doctors and been told anything, is this your impression? If so this is the best news ever, let me know officially.

Take Care, God Bless

Russ

ali90h7 · November 2023

https://csn.cancer.org/discussion/comment/1710461#Comment_1710461

Hi Ross, so far I haven't heard from the doctors due to the weekend. Today I hope to hear their opinion. I will inform you of developments.

wbcgaruss · November 2023

Very well Ali, I am hoping and praying for the best possible outcome.

Take Care, God Bless

Russ

goffrey · November 2023

https://csn.cancer.org/discussion/comment/1710343#Comment_1710343

It is concerning and selfish he was in a clinical trial and chose not to disclose he was taking this protocol. It could of had huge implications for the clinical trial. Huge no no. I would advice people IF they want to try unproven last ditch methods be upfront with your doctor and especially if you are in a trial as to not skew results which could impact others and not just yourself.

Shocking result

Focal increased radiotracer uptake in the left mandibular region with an SUV-max of 5.5 corresponding to soft tissue density inseparable from the soft tissue mass . This lesion could be related to metastatic lymph node. To be correlated to ultrasound or MRI.

There is normal homogeneous attenuation of the left hemi thyroid, with no abnormal FDG uptake. Persistent mildly increased focal FDG uptake in the proximal esophagus, likely reactive. The brain is normal on the non-contrast CT scan with no hypermetabolic foci exceeding the normal cerebral cortex. )

I see that things are heading for the worse😔

Comments

The Blog – Get Busy Living

Hello, I will surprise you with the result of the MRI report.

Most developments on the left side of the neck are side effects of radiation therapy, most of which are fluid edema.

I also showed the PET CT scan report to two oncologists who were not very convinced by what was stated in the report.

Their conclusion, according to the MRI report, was that the radiation burns the cells, which causes them to swell, and because of the swelling, the size can increase, and this is what is medically called false relapse.

It is possible that the patient needs some time to re-evaluate.

You should read the MRI report I have attached for you

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