Next Step.....

eihtak · February 2015

Hi all,

So I am continuing to recover from surgery to remove the large (3.5 centimeter) mass on my lung which was in fact a recurrance of anal cancer first diagnosed 4 years ago and treated with standard cisplatin/5FU. I met with my oncologist today to discuss the next step. He considers the surgery very successful in that the margins were clear as well as 6 lymph nodes that were checked. (Although I am now short 1/2 a lung, lol)

He says, we could do nothing and just watch and treat potential recurrances again based on scans. But, this lung mass came on fast and out of no where.....clear one scan, the size of a peach the next! His recommendation is to begin chemo as a preventative measure against another recurrance. I signed the consent form to begin in 2 weeks and highly doubt I will change my mind, but if anyone has any thoughts I'd love to listen. The chemo plan is for 12weeks of 4 cycles (I think) of cicplatin/5FU again. According to the NCCN guidelines this is standard treatment for metastatic anal cancer its just a little more difficult being that surgery seems to have been successful for now.

I feel like I'd be entering chemo stronger and healthier than the first go around and better able to keep up on things like rest, nutrition, etc. This would interfer with the timing of my daughters wedding in May, but he said we can arrange to have days off to make it work as best as possible.

Yay or Nay ??????

katheryn

mp327 · February 2015

katheryn

If it were me, I would most likely choose to go through the chemo and not take a chance that without it, the cancer would not return. The chemo is just some extra insurance. It's great that your margins were clear and it sounds like you are mentally and physically prepared to step into the ring this time. You will certainly be in my thoughts and prayers for a successful treatment and you have all of my support. Hugs!

z · February 2015

Katheryn

Hello I too am so glad margins were clear and lymph nodes were clear. I too would do the chemo to get rid of it for once and all. As far as missing your lung, my oncologist told me that the right lung will increase in size up to 35% to compensate for the removal of my lower lobe. i would think it wouldn't matter which lung was removed. I wish you well and keep us updated.

RoseC · February 2015

Katheryn

I had a lot of trouble with chemo, as did you. If it were suggested to me again I'd really have to think long and hard about it. It would be very scary to think about doing it again. But because you've been through it before and are aware of the pitfalls, plus you feel healthier now, plus that other lump came on so suddenly - plus, also, the thought that, with your daughter getting married, you'll want to be around for those little grandchildren, I would probably do it. But it's ultimately your decision. Besides all the logical questions and answers, what is your intuition telling you?

eihtak · February 2015

RoseC said:
Katheryn
I had a lot of trouble with chemo, as did you. If it were suggested to me again I'd really have to think long and hard about it. It would be very scary to think about doing it again. But because you've been through it before and are aware of the pitfalls, plus you feel healthier now, plus that other lump came on so suddenly - plus, also, the thought that, with your daughter getting married, you'll want to be around for those little grandchildren, I would probably do it. But it's ultimately your decision. Besides all the logical questions and answers, what is your intuition telling you?

Rose....

My intuition tells me to say yes to chemo now and don't risk waiting to find another recurrance and tackle it then, because then, may be too late. As I have I stated in the past, I have a great deal of respect for my oncologist and trust his opinion, and, this is his recommendation as well.

The first time around I was desperately ill going in, severely low red blood counts and iron, and treatment included radiation as well as in my case healing from ostomy surgery. (And, the unknown growing breast cancer tumor at the time) While I am healing from the surgery to my lung, I am otherwise going in feeling well armed with health!

The wedding could be a good motivator to get through this easier.....although I am the designated florist. My daughter has agreed to silk flowers that I plan to start next week with live tulip bouquets at the reception, so easy to do.

Complications are always a risk and I am a little worried, but I am not much of a gambler and I feel the bigger risk for me is to do nothing after seeing how fast this recent mass evolved.

Thank you for the input, it is the opinions of everyone here that are often the most beneficial.

katheryn

eihtak · February 2015

z said:
Katheryn
Hello I too am so glad margins were clear and lymph nodes were clear. I too would do the chemo to get rid of it for once and all. As far as missing your lung, my oncologist told me that the right lung will increase in size up to 35% to compensate for the removal of my lower lobe. i would think it wouldn't matter which lung was removed. I wish you well and keep us updated.

z....

Thank you, you've been very helpful with this whole surgery. No one had mentioned the lung increasing to compensate but that is so neat and makes a lot of sense. I will ask about it at my next appointment.

I will keep you posted as I move on.....

katheryn

eihtak · February 2015

mp327 said:
katheryn
If it were me, I would most likely choose to go through the chemo and not take a chance that without it, the cancer would not return. The chemo is just some extra insurance. It's great that your margins were clear and it sounds like you are mentally and physically prepared to step into the ring this time. You will certainly be in my thoughts and prayers for a successful treatment and you have all of my support. Hugs!

martha....

I think you're right, the chemo is like extra insurance even if it comes at a high price! After seeing how fast this recent mass popped up I just don't want to chance it right now, besides waiting and doing nothing would be an emotional nerve racking wait for a ticking bomb that may or may not ever go off I'm afraid.

Its just hard to go into this when technically "today" I don't have any "known" cancer since the surgery results were good. Yet, in my life, I've been thankful for car insurance, home insurance, health insurance, and so now will be hoping this chemo is a great cancer insurance policy as well!

Thank you so much for all your support.

katheryn

RoseC · February 2015

eihtak said:
Rose....
My intuition tells me to say yes to chemo now and don't risk waiting to find another recurrance and tackle it then, because then, may be too late. As I have I stated in the past, I have a great deal of respect for my oncologist and trust his opinion, and, this is his recommendation as well.

The first time around I was desperately ill going in, severely low red blood counts and iron, and treatment included radiation as well as in my case healing from ostomy surgery. (And, the unknown growing breast cancer tumor at the time) While I am healing from the surgery to my lung, I am otherwise going in feeling well armed with health!

The wedding could be a good motivator to get through this easier.....although I am the designated florist. My daughter has agreed to silk flowers that I plan to start next week with live tulip bouquets at the reception, so easy to do.

Complications are always a risk and I am a little worried, but I am not much of a gambler and I feel the bigger risk for me is to do nothing after seeing how fast this recent mass evolved.

Thank you for the input, it is the opinions of everyone here that are often the most beneficial.

katheryn

Hi Katheryn

I'm a great believer in intuition. Sometimes I think it comes from something bigger than ourselves, if you know what I mean. It sounds as though you've made your decision. You'll do great! Look at all the experience you have, what with having gone through it before in a less healthy state. You'll do just fine. I truly wish you all the best in the world. You really, really are an inspiration to all of us.

pializ · February 2015

RoseC said:
Hi Katheryn
I'm a great believer in intuition. Sometimes I think it comes from something bigger than ourselves, if you know what I mean. It sounds as though you've made your decision. You'll do great! Look at all the experience you have, what with having gone through it before in a less healthy state. You'll do just fine. I truly wish you all the best in the world. You really, really are an inspiration to all of us.

Katheryn

Thanks for updating us. I am so glad surgery went well and you are recovering. I too would take the chemo. Anything that would insure against a further recurrence. Like you say, next time it could be too late, so to not take the chemo would be a no brainer. That said, it must still seem daunting, and after all you have been through, it seems so very unfair. But then life can be like that. But still unfair!

Gentle hugs and strength

Liz

eihtak · February 2015

pializ said:
Katheryn
Thanks for updating us. I am so glad surgery went well and you are recovering. I too would take the chemo. Anything that would insure against a further recurrence. Like you say, next time it could be too late, so to not take the chemo would be a no brainer. That said, it must still seem daunting, and after all you have been through, it seems so very unfair. But then life can be like that. But still unfair!

Gentle hugs and strength

Liz

pializ....

I don't look at things so much as fair or unfair, as we all know there are people all over the world that suffer much more then ourselves. Sometimes it seems a little "off balanced" if anything....but when I think of all the goodness I have been blessed with from the time I was very young maybe my "life scale" is just in need of some tweaking is all!

From a more literal/ scientific view point.....this is taken from my pathology report:

The tumor shows keratinizing squamous cell carcinoma, which is strongly positive for both p16 and p40. Comparing with previous anal mass (W11-355) which has similar features, both are strongly positive for p16, and associated marker for human papilloma virus. Therefore, it is consistent with metastasis from the previous anal squamous cell carcinoma.

So, simple as having active HPV that led to anal cancer dx four years ago and initially going in for treatment late thus being Stage 3b to start with and now a recurrance. How and when I contracted HPV I won't ever know nor do I wish to waste energy worrying about something that right now serves no positive purpose. So, in my mind yes it is fair, its just physical science but now I'm counting on my spiritual faith to overcome this challenge.

That being said, while chemo does seem a no-brainer, yes it is very daunting and I much appreciate your gentle hug and strength I pull from people here. I put on a brave face for friends and family but in all honesty, I'm a little scared!

Thanks again,

katheryn

mp327 · February 2015

eihtak said:
pializ....
I don't look at things so much as fair or unfair, as we all know there are people all over the world that suffer much more then ourselves. Sometimes it seems a little "off balanced" if anything....but when I think of all the goodness I have been blessed with from the time I was very young maybe my "life scale" is just in need of some tweaking is all!

From a more literal/ scientific view point.....this is taken from my pathology report:

The tumor shows keratinizing squamous cell carcinoma, which is strongly positive for both p16 and p40. Comparing with previous anal mass (W11-355) which has similar features, both are strongly positive for p16, and associated marker for human papilloma virus. Therefore, it is consistent with metastasis from the previous anal squamous cell carcinoma.

So, simple as having active HPV that led to anal cancer dx four years ago and initially going in for treatment late thus being Stage 3b to start with and now a recurrance. How and when I contracted HPV I won't ever know nor do I wish to waste energy worrying about something that right now serves no positive purpose. So, in my mind yes it is fair, its just physical science but now I'm counting on my spiritual faith to overcome this challenge.

That being said, while chemo does seem a no-brainer, yes it is very daunting and I much appreciate your gentle hug and strength I pull from people here. I put on a brave face for friends and family but in all honesty, I'm a little scared!

Thanks again,

katheryn

katheryn

I felt the same way when I was diagnosed about putting on a brave face for the sake of others around me. It's crazy, but human nature, at least for some of us. I also understand the scary part and you wouldn't be human if you didn't have some fear. But you are going to get through this!

Martha

jcruz · February 2015

katheryn

Oh dear. I'd go for the chemo too. I would have a hard time with watch and wait. But if it were me I would also ask about waiting until I've fully recovered from surgery and maybe about waiting until after the May wedding.

Also, seems like the chemo, as harsh as it is, would be somewhat easier to cope with than before when you were also getting radiation.

Janet

pializ · February 2015

jcruz said:
katheryn
Oh dear. I'd go for the chemo too. I would have a hard time with watch and wait. But if it were me I would also ask about waiting until I've fully recovered from surgery and maybe about waiting until after the May wedding.

Also, seems like the chemo, as harsh as it is, would be somewhat easier to cope with than before when you were also getting radiation.

Janet

Being diagnosed 'late'

i too was diagnosed late. 3a. But here in the UK I have had to be firm in asking for ct scan in follow up. It's not routine where I live. But as I, like you, was node positive, it's crucial. Also, I was told that if there was a recurrence (apart from local) there would be no surgery, just palliative chemo. A very different approach.

As far as being scared, I'd be concerned if you weren't! But you've handled everything else thrown at you, & this will be no different. We'll be holding your hand along the way though......

Liz

Adam26 · February 2015

I would definitely have the

I would definitely have the chemo, just to be on the safe side!

Pializ, I'm also in the UK. Why would they say that? I remember reading someone on this forum had a recurrence to her liver and a resection and was fine afterwards, so I don't understand why they'd only consider palliative care for a non-local recurrence.

Best wishes to you Eihtak.

qv62 · February 2015

eihtak

So sorry you have to travel down this road again, but if I were in your shoes I would opt for the chemo. I hope you find peace with your decision. I will be praying for you, please keep us posted. You have always been such a comfort on the board, we are all here for you.

pializ · February 2015

qv62 said:
eihtak
So sorry you have to travel down this road again, but if I were in your shoes I would opt for the chemo. I hope you find peace with your decision. I will be praying for you, please keep us posted. You have always been such a comfort on the board, we are all here for you.

Adam26

The only answer I can give you is 'I don't know ', except for budget terms. I live in Wales, & our NHS is run differently to England. I think it's just a short straw thing. Hope I don't have to find out. We don't even have pet scans for ac in Wales.

judyv3 · February 2015

eihtak said:
pializ....
I don't look at things so much as fair or unfair, as we all know there are people all over the world that suffer much more then ourselves. Sometimes it seems a little "off balanced" if anything....but when I think of all the goodness I have been blessed with from the time I was very young maybe my "life scale" is just in need of some tweaking is all!

From a more literal/ scientific view point.....this is taken from my pathology report:

The tumor shows keratinizing squamous cell carcinoma, which is strongly positive for both p16 and p40. Comparing with previous anal mass (W11-355) which has similar features, both are strongly positive for p16, and associated marker for human papilloma virus. Therefore, it is consistent with metastasis from the previous anal squamous cell carcinoma.

So, simple as having active HPV that led to anal cancer dx four years ago and initially going in for treatment late thus being Stage 3b to start with and now a recurrance. How and when I contracted HPV I won't ever know nor do I wish to waste energy worrying about something that right now serves no positive purpose. So, in my mind yes it is fair, its just physical science but now I'm counting on my spiritual faith to overcome this challenge.

That being said, while chemo does seem a no-brainer, yes it is very daunting and I much appreciate your gentle hug and strength I pull from people here. I put on a brave face for friends and family but in all honesty, I'm a little scared!

Thanks again,

katheryn

Look forward

That's all you can do, you've made your decision (which I totally agree with), so now you just power through. I don't know you Katheryn, but everyone on this forum is a warrior. You undoubtedly will have difficult days ahead, but they will pass and you will have your insurance. My thoughts and prayers are with you.

Judy

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