Question about newly diagnosed SSC HPV Stage II

momall25ofu

My husbad was diagnosed with SSC HPV Stage II June 2018.  We've been fighting with the insurance company since then.  We are on a limited PPO -- who knew cancer was coming?  We won the fight and he'll have robotic surgery August 16th to remove the cancer in his throat, as well as regular surgery to "strip" the lymph nodes, then four to six weeks later will have radiation and chemo.

My question:  At the same time that he noticed the swollen lymph node, he started having blood in his semen.   This was the first of April 2018.  Before the cancer diagnosis, he went to a urologist and had two rounds of antibiotics to clear up the bleeding.  It did not stop.  He is still bleeding.  The PET Scan did not show any cancer except in the neck and throat.  Has anyone else experienced bleeding in their semen with throat cancer?  Nobody wants to address it.  We've been so caught up with dealing with the cancer, that we have not gone back to the urologist.  I know --- that's probably something we should do -- but has anyone else experienced something like this?

Also, my husband asks if anyone else has had the robotic surgery and if so, was it hard?

momall25ofu

No one has had this symptom??

No one has had this symptom????

johnsonbl

No...

I've not heard of anyone having this symptom in relation to this disease...  Nor have I read about that either.  I think it is completely unrelated, however, shouldn't be ignored.  As you mention, you should definitely follow up with urology.

I had TORS surgery to remove my tumor from the base of my tongue.  It was really not too bad.  I was in the hospital only 1 night.  The sooner you can eat/drink soft foods the sooner they'll let you go.  The put a feeding tube down my nose just in case I had trouble eating/drinking after and honestly, it was more uncomfortable than the surgery site itself.  I instisted they remove it first thing the next morning and once they did I was able to eat right away.  I had a sore throat for a couple weeks, that was about it.

One other thing to consider, if he has to have any teeth pulled before radiation, you could have them do it while he is out for his TORS surgery.  I did that.  It was nice not to have my wisdom teeth out in between my TORS and the start of radiation...

Good luck.

 

Brandon

CivilMatt

touchy subject

momall25ofu,

By the lack of response from our smart, versatile and dedicated H&N members, I would guess you are “shooting in the dark”, i.e. no one knows anything pertinent.  As for me, “shooting from the hip” I would think that the stage II, SCC, HPV + and the blood in the semen are maybe related (by way of cancer diagnosis) but not connected to the cancer.

BUT, who knows, maybe I should have checked my soldiers more closely 6.5 years ago.  Maybe, all male members of the H&N forum should investigate their ammo, as it comes available.

I would defiantly check with the urologist to confirm all is well, down there.  You did not know about the cancer yet when he found the blood in the semen.  When you had the SCC diagnosis, you probably should have mentioned it to your oncologist, but you did not and it is not the end of the world.

You want to know if anyone had the robotic surgery and if it was hard?  Well, I did not have the robotic surgery I had the old fashioned surgeon and knife and I do not think it was hard.

Oh well, have nice day.

Matt

momall25ofu

johnsonbl said:

No...

I've not heard of anyone having this symptom in relation to this disease...  Nor have I read about that either.  I think it is completely unrelated, however, shouldn't be ignored.  As you mention, you should definitely follow up with urology.

I had TORS surgery to remove my tumor from the base of my tongue.  It was really not too bad.  I was in the hospital only 1 night.  The sooner you can eat/drink soft foods the sooner they'll let you go.  The put a feeding tube down my nose just in case I had trouble eating/drinking after and honestly, it was more uncomfortable than the surgery site itself.  I instisted they remove it first thing the next morning and once they did I was able to eat right away.  I had a sore throat for a couple weeks, that was about it.

One other thing to consider, if he has to have any teeth pulled before radiation, you could have them do it while he is out for his TORS surgery.  I did that.  It was nice not to have my wisdom teeth out in between my TORS and the start of radiation...

Good luck.

 

Brandon

Brandon, thank you for your

Brandon, thank you for your reply.   He has a physical and pre-op on Thursday to prepare for  his surgery.  I'm glad to know that the surgery won't be too bad.

momall25ofu

CivilMatt said:

touchy subject

momall25ofu,

By the lack of response from our smart, versatile and dedicated H&N members, I would guess you are “shooting in the dark”, i.e. no one knows anything pertinent.  As for me, “shooting from the hip” I would think that the stage II, SCC, HPV + and the blood in the semen are maybe related (by way of cancer diagnosis) but not connected to the cancer.

BUT, who knows, maybe I should have checked my soldiers more closely 6.5 years ago.  Maybe, all male members of the H&N forum should investigate their ammo, as it comes available.

I would defiantly check with the urologist to confirm all is well, down there.  You did not know about the cancer yet when he found the blood in the semen.  When you had the SCC diagnosis, you probably should have mentioned it to your oncologist, but you did not and it is not the end of the world.

You want to know if anyone had the robotic surgery and if it was hard?  Well, I did not have the robotic surgery I had the old fashioned surgeon and knife and I do not think it was hard.

Oh well, have nice day.

Matt

Matt, Thank you for getting

Matt, Thank you for getting back to me.  No, we didn't know it was cancer when we first caught the problem in the "ammo", but that started at the SAME TIME as the lump in his neck.  That's why I thought it was related.  Everytime we've mentioned it to a doctor, they've ignored it.  We will go back to a urologist as soon as he's able.  

I wondered on it hurting after surgery, because I didn't know how soon it would be that he'll have problems eating.  Thank you for your help.

Katy P

SSC HPV-related

 My husband was just diagnosed with this a month ago, and I’m wondering why he was not offered the TORS surgery. He is stage II.  I suppose he should ask his doctor.  His radiation and chemo start Tuesday. Thanks for sharing your experience.

momall25ofu

I was very proactive,

I was very proactive, researched it a lot.  I had to fight my insurance to get the TORS  robotic surgery.   I used “gap in coverage” because our HMO did not have TORD as an option.   I accidentally said PPO in previous comment, but it’s an HMO.   I found that rad/chemo is still considered “standard of care” but they’re proving that having TORS first means less rad/ chemo needed.  Good luck with your husbands treatment.  We need to keep in touch. 

Katy P

momall25ofu said:

I was very proactive,

I was very proactive, researched it a lot.  I had to fight my insurance to get the TORS  robotic surgery.   I used “gap in coverage” because our HMO did not have TORD as an option.   I accidentally said PPO in previous comment, but it’s an HMO.   I found that rad/chemo is still considered “standard of care” but they’re proving that having TORS first means less rad/ chemo needed.  Good luck with your husbands treatment.  We need to keep in touch. 

Thanks! Same to you & hubby.

Thanks! Same to you & hubby. I’ll definitely check back to see if you’re posting how it’s going.

ericyvonne

Post TORS surgery

My hubby had the surgery too, was quite painful for about a week, but now over 4 weeks later he is almost back to normal.  He started out with stage 1 HPV+ but since pathology moves to stage 2. He starts 8/20 on chemo and proton radiation.  We were hoping that based on surgery he would not need such aggressive treatment BUT after finding 14 lymph nodes with cancer (we thought 3) and positive margins on this tonsil they removed, they decided to go with 33 proton treatments and 3 chemo.

 

Your husband is probably in the worst part if he just had surgery...tell him to swallow as much as he can!  As much as it hurts, it will actually get him better faster.

 

Best of luck!!