Update and a few words about HPV+ SCC

Laralyn

I haven't posted in the past few months because dealing with treatments, etc. was pretty draining. For folks who may have missed my few posts last year, I had Stage IV HPV+ SCC in my left tonsil and soft palate in 2012. I was all clear for all scans and exams in that area. In late 2015, I had a persistent cough. When I coughed up blood, I started seeking treatment, which led to two X-rays (which showed only pneumonia) and one CT scan (which showed pneumonia and a very large mass in my right lung). Two different biopsy techniques led to a diagnosis of Stage IIIb SCC in my right lung (5X6 cm mass) and in many lymph nodes, all the way up to my collarbone.

I had a set of treatments very similar to what I had for the H&N cancer in 2012: 7 weeks of IMRT (tomotherapy this time) accompanied with lower-dose chemo (cisplatin last time, carboplatin+taxol this time). In addition I had two high-dose chemo treatments 3 and 6 weeks after radiation. The side effects during treatment were rough but not nearly as bad as H&N treatments.

My first post-treatment PET scan was yesterday, at the three month mark. There are a few areas to watch (a bit of lit up areas that looked like tree branches on the PET, and some ground glass opacity areas on the CT) but the interpretation from both the radiologist and my radiation oncologist are that they're inflammation from the radiation. So the official results are that there is no sign of cancer anywhere in my body at this time. I have a follow up CT in three months.

If you're familiar with Stage IIIb lung cancer, that's an astonishing result. I'm immensely grateful to my doctors, who decided to go for a cure instead of palliative treatments. It also made me start doing some research into HPV+ lung cancer... only to discover there isn't much information out there yet.

It's well documented now that HPV+ SCC in the head and neck responds more quickly and completely to chemoradiation. The latest studies seem to show it recurs less often but more quickly: usually within 2 years if it returns to the original site, or within 6 months for a metastasis. Both instances of cancer in my case were identical (HPV+ SCC) and both were very aggressive, growing 2+ cm in a single month. In my opinion, it's really unlikely that an aggressive cancer would never return in the original location and yet suddenly metastasize after three years in a distant location. In fact, my doctors decided to treat this as a new primary.

I'm saying all of this for other HPV+ SCC folks who may be reading this. Ask your doctors for lung CTs all the way out to the five year mark--don't think the head and neck exams or scans are all you need. If you develop lung cancer, insist that it be screened for HPV. If it's HPV+, find a set of doctors who will use first-line treatments on you (chemo+rads) even if you're Stage IV. I'm hoping we'll get research and more answers on this issue soon, but in the mean time we have to be our own advocates.

Also, thanks again for all the support here on CSN. To be honest, I felt weird posting about lung cancer here in the Head & Neck forums... and I shouldn't have. :-)

Hondo

Little spots

As with most of the PET scans I did it always lit up something somewhere, just glad to know you are doing well and getting the treatment you will need.

PS: Don’t worry about posting Lung Cancer here on H&N, it is good to know how you are doing even if the cancer was on your big toe.

Tim

 

 

 

tommyodavey

Bad News/Good News

Hi Laralyn,

 

You and I go back to around the same time frame of treatments so your post caught my eye right off.  I'm so sorry to hear it went into the lungs.  But it's so great that you were an advocate of preventative treatment that they were able to detect it early.  I agree with you on the treatment options.  Get it out of there and be cancer free like you are now.  So yes, bad news followed by good news.

 

My type of cancer was different but still has the same history of showing up in a different place if it does come back.  Had you not been a head and neck patient you may not have caught this one in time.  Good News!

 

I'm just glad to hear you're okay and will keep marching forward.  I hold dear all of those who saw me through my treatment and gave me encouraging words, like you did back then.

 

Live Long and Prosper!

 

Tom

Barbaraek

Great news and great info Laralyn

I am so glad to hear that your results look promising. No trifecta, ok? Twice is enough! My husband's nasopharyngeal tumor was HPV 16+ so I've been following your posts. We'll be vigilant about the scans, especially around the chest/lung.

All the best,

Barbara

CivilMatt

you make me think!

Dear Laralyn,

I am very pleased with your early results and your positive attitude.

My sister is a doctor of viro-biology who worked exclusively with the HPV virus for 8 years (retiring recently).  I talked to her about your case and she said it was unusual because the HPV has an infinity for cell structures found in the tongue, tonsils, soft palate.  So, I spoke to my rad onc and she mentioned if HPV is given too much time before treatment, if the virus is active, then the chances of spreading is relevant.

You mentioned that your doctor was treating it like a separate primary.  I am constantly amazed at what happens  in “cancer world” , but it is hard for me to accept that after going through these treatments the cancer still persists, but it does.  I will be vigilant and keep the faith, but it sometimes is an uphill battle.

Wishing you the very best.

Matt

 

SQLNOLE

Good luck

Laralyn,

Good luck with your continuing situation.

I am just embarking on the HPV+/SCC journey - diagnosed in February and surgery on Tuesday.

Richard

the_wife

Congratulations!

Laralyn,

Congratulations, that certainly sounds like good news to me!! My hubby had Stage 4 HPV+ tonsil cancer that had gone into two nodes. He is still NED at 6 months out. I am very interested in what you have to post here anytime. You should not hesitate to hang out here on this thread. You are a H&N survivor, so that gives you a lifetime pass! 

Thanks so much for sharing - that is all very interesting information. Personally, I can't get enough information on H&N or related cancers others experience with a similar diagnosis as my hubby's. 

One thing I am concerned about is that since my hubby's immediate post treatment PET scan, he has not had any other scans and I don't believe they plan on doing any until 1 year out. This is concerning, but seems to be the "new standard" for other types of cancers, too. Very scary, but apparently the thinking is that most of the time we discover recurrences or new cancers on our own, as you did. But still, you wonder....

Again, congratulations and thanks for sharing! Don't be a stranger...it's nice to hear from you anytime.

Take care!

MrsBD

Happy

It's always allowed to post happy news! I'm glad to hear you had such a good result from your treatment. Like someone else said, I can't get too much information about this cancer. Even though mine was HPV- , I do have two lung nodules that are being watched and appreciate that you've shared your story with us. I hope you continue to feel stronger and healthier every day. 

donfoo

thanks

Hi Laralyn,

Thanks for the update. It doesn't matter that the new cancer is different. You offered a lot of very useful insights for us OC suvivors to tuck in our belts if needed down the road. From all my reading and talking with the docs, HPV cases do indeed have far better prognosis and also the timeline for recurrence is shorter. It is quite common for the docs to talk about "cure" at the 3 year mark for HPV OC with nothing unusual else going on.

So sorry to hear about the lung cancer. You are probably in the other forum more these days but do keep up posted. we're family right?

don

 

wmc

YES YOU SHOULD........

First don't feel that posting about lung cancer was wrong. Many have it light up in the lungs and even spread to them. You started as H&N and fought where ever it went, plus we are all family once you join this group. The only way to say how this group is, and grateful we have ones that understand just how we do feel and go through. Plus that was some really good advice. Glad you are doing ok.

Bill

C6873

Update on my husband

I posted last month that after my husband had finished his head neck cancer treatment in March, pet rescanning send of May light up in both lung fields.

He just had biposy last week, and confirmed it was cancer, squamous cell that was in neck.

Oncologist will treat him with Keytruda instead of standard chemo.  Anyone familiar with this drug?

We are both upset worried on survivor of this as what we read is so dismal.

Laralyn

C6873 said:

Update on my husband

I posted last month that after my husband had finished his head neck cancer treatment in March, pet rescanning send of May light up in both lung fields.

He just had biposy last week, and confirmed it was cancer, squamous cell that was in neck.

Oncologist will treat him with Keytruda instead of standard chemo.  Anyone familiar with this drug?

We are both upset worried on survivor of this as what we read is so dismal.

So sorry to hear that!

It might be worth a second opinion, to see if radiation plus chemo is at all a possibility. My oncologists wanted to reserve options like Keytruda as second line treatments, in case it recurs. I'm only one scan in after my lung treatments so we'll see what happens at the second scan in a few weeks... but my radiation oncologist said that since it didn't return to the orginal location after rad+chemo, there is a chance the same will happen in the lung. 

Beyond that, don't give up hope! All of the lung cancer stats are even more out of date than head and neck cancer because there has been a lot of recent research into targeted and immune therapies. The lung cancer board here was not as helpful for me as sites like Inspire's American Lung Association's board, which seems to get more traffic. It's what taught me that there's a shift to look at how to manage lung cancer rather than considering it some kind of "lost cause." Ultimately it's all about buying time for any of us, but for lung cancer the research is so ongoing and important that buying time becomes even more relevant and important.

I'm glad to answer any questions I can--in this thread or via message. 

Laralyn

This reminded me to do my data search...

...and look what I found. The data's coming in now linking HPV to lung cancer.

HPV and lung cancer risk: a meta-analysis. Our results suggest that lung tissue with HPV infection has a strong association with LC, and especially, HPV16/18 infection significantly increases SCC risk, which indicates a potential pathogenesis link between HPV and LC. 

 

Human papillomavirus infection and risk of lung cancer in never-smokers and women: an 'adaptive' meta-analysis. These results showed a significant effect of HPV infection in LCNSW. It is evident that developing a preventive plan against LCNSW may be necessary.

 

The association between human papillomavirus infection and female lung cancer: A population-based cohort study. This study showed a significant increase in lung cancer risk among Taiwanese women who were exposed to HPV infection.

 

C6873

Laralyn said:

So sorry to hear that!

It might be worth a second opinion, to see if radiation plus chemo is at all a possibility. My oncologists wanted to reserve options like Keytruda as second line treatments, in case it recurs. I'm only one scan in after my lung treatments so we'll see what happens at the second scan in a few weeks... but my radiation oncologist said that since it didn't return to the orginal location after rad+chemo, there is a chance the same will happen in the lung. 

Beyond that, don't give up hope! All of the lung cancer stats are even more out of date than head and neck cancer because there has been a lot of recent research into targeted and immune therapies. The lung cancer board here was not as helpful for me as sites like Inspire's American Lung Association's board, which seems to get more traffic. It's what taught me that there's a shift to look at how to manage lung cancer rather than considering it some kind of "lost cause." Ultimately it's all about buying time for any of us, but for lung cancer the research is so ongoing and important that buying time becomes even more relevant and important.

I'm glad to answer any questions I can--in this thread or via message. 

Thank you for information

We have had 2 opinions and both and they thought Keytruda best option for him. He was HPV positive in neck but did not test for hpv in lung biopsy due to the small sample they were able to get, in case we need to send for a future clinical trial. I would think since so soon in lung, must also be HPV positive as well.

i refuse to give up, and feel both doctors are not optimistic about survival, so praying Keytruda will prolong life.

 

swopoe

I am so glad you are doing

I am so glad you are doing well, and I am glad we get to follow along on your journey. All my prayers and blessings to you!

Boopergirl

the_wife said:

Congratulations!

Laralyn,

Congratulations, that certainly sounds like good news to me!! My hubby had Stage 4 HPV+ tonsil cancer that had gone into two nodes. He is still NED at 6 months out. I am very interested in what you have to post here anytime. You should not hesitate to hang out here on this thread. You are a H&N survivor, so that gives you a lifetime pass! 

Thanks so much for sharing - that is all very interesting information. Personally, I can't get enough information on H&N or related cancers others experience with a similar diagnosis as my hubby's. 

One thing I am concerned about is that since my hubby's immediate post treatment PET scan, he has not had any other scans and I don't believe they plan on doing any until 1 year out. This is concerning, but seems to be the "new standard" for other types of cancers, too. Very scary, but apparently the thinking is that most of the time we discover recurrences or new cancers on our own, as you did. But still, you wonder....

Again, congratulations and thanks for sharing! Don't be a stranger...it's nice to hear from you anytime.

Take care!

Husband has same diagnosis

My hubby was diagnosed in January 2016 with stage 4 hpv related scc of left tonsil with 2 nodes involved. He went through 6 weekly chemo treatments and then had 33 radiation treatments. He is doing really great. We go this coming Monday for 2 month follow up with ct of head and neck and ct of lungs. I am like you in regards to wanting to know everything I can about this cancer and others experiences. Sometimes I feel I need to let it go. So glad your husband is doing well also. 

Fritz

Thanks for the update.

I am glad you are doing well with your new cancer battle.  Your diagnosis is eerily similar to my own.  I tool was diagnosed with Stage IVA cancer of the left tonsil with spread into the soft palate and tongue base with entry into the nearby lymph node.  Also, HPV +.  I did have surgery to remove the tonsils, some tongue base and some soft palate all with clear margins.  Rads and Chemo plan mirrored your own and started on June 1, 2016.  So this is truly information that is important to my continued fight. My pre-treatment PET was full body; and with this information, I will push to have full body continue throughout the post treatment periods.

Again, I wish you the best and appreciate this information being shared with us.

Freddie

kdot2003

LaraLyn,

LaraLyn,

Thank you for the update.  I too had SCC HPV16+.  Dumb question.  I'm having the PET scans q3mo x 1 year etc etc.  I did have a chest CT because something glowed on PET but otherwise no CT's are planned.  Nobody has mentioned screening CT.  Should I mention it to them?

So your lung ca was most likely a new primary?  A SCC HPV+ new primary?  I didnt even know you could get SCC HPV+ in the lung unless it was mets there from HNC.  But then I know next to nothing about cancer (L&D nurse here).  What a road you've travelled.

Thank you for sharing your experiences!

Laralyn

C6873 said:

Thank you for information

We have had 2 opinions and both and they thought Keytruda best option for him. He was HPV positive in neck but did not test for hpv in lung biopsy due to the small sample they were able to get, in case we need to send for a future clinical trial. I would think since so soon in lung, must also be HPV positive as well.

i refuse to give up, and feel both doctors are not optimistic about survival, so praying Keytruda will prolong life.

 

Glad you have two opinions!

It always helps to be sure about your path forward. I've heard great things about Keytruda and I think it's less hard on the body as well?

Laralyn

kdot2003 said:

LaraLyn,

LaraLyn,

Thank you for the update.  I too had SCC HPV16+.  Dumb question.  I'm having the PET scans q3mo x 1 year etc etc.  I did have a chest CT because something glowed on PET but otherwise no CT's are planned.  Nobody has mentioned screening CT.  Should I mention it to them?

So your lung ca was most likely a new primary?  A SCC HPV+ new primary?  I didnt even know you could get SCC HPV+ in the lung unless it was mets there from HNC.  But then I know next to nothing about cancer (L&D nurse here).  What a road you've travelled.

Thank you for sharing your experiences!

My oncologists decided to

My oncologists decided to treat my HPV+ lung SCC as a new primary based on two factors: the way it grew, and the fact that there has been no recurrance at all at the original site in 4 years. There's new data coming in (see my post above) starting to indicate that HPV may cause primary lung cancer SCC--in patients who never had H&N or ovarian cancer. You could take this data to your oncologist or primary care physician and request either lung CTs or, if they prefer it, lung x-rays at regular intervals. In my case, though, a large mass (bigger than a golf ball) in my lower right lobe didn't show up on two separate x-rays but was finally visible on a CT scan two weeks later (not that it grew that quickly--just saying even a large mass can "hide" in an x-ray).

Hope this helps!