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Good news but...........

Clovergirl
Posts: 48
Joined: Dec 2012

I finished my scans right after the holidays and yesterday I had both of my oncology consults yesterday. I met with the rad doc first. I had my sister with me and my 18 year old daughter with me. Needless to say the three of us were a nervous wreck. I was nauseated and light headed. So the doc comes in and asks me how I'm feeling and asks me to tell my story. Basically from symptoms to diagnosis. After I tell my story he says "I'm not surprised that you are doing well because we don't see any cancer". Okay????? All scans are clear. He goes on to say the tumor I had was 2cm. He staged me as 0-1. He said that he had already spoken to the chemo Dr. that I'm going to see that morning and that they put my case on the agenda for their tumor board meeting next week. He said they are not sure about treatment. He of course went over the standard Protocol of treatment for anal cancer. (and yes to those of you that are wondering. he has treated many cases of anal cancer). They are considering if they should treat me at all right now or just closely monitor me or just do radiation. I'm 46 and otherwise healthy. He said they are thinking of the treatment side effects and life changes that happen. with this treatment. They are basically saying "do we need to make this woman sick right. now?" So I go right from his office down the hall to the chemist doc. Basically the same discussion but he threw in another possible option which would be surgery to go back in and basically scrape the area where the tumor was to get bigger margins in case of microscopic cells that can't be seen. Then monitor closely. If it comes back then go forward with standard treatment. They said they will call me next week after the tumor board meeting. At that time they will make the recommendation to me but will ultimately be my decision. I understand all of it. Will be a very tough decision for me. With my age and what's going on in my life right now quality of life issues are a big factor for me. I'm My daughter graduates from High School I'm May and we are going to Ireland in June. And the big one is I'm getting married I'm October. (big wedding). So you can see why I wouldn't want pain incontinence sex issues etc.... HOWEVER I don't want cancer either! It's so frustrating. It could never come back. Or it could be years. Or it could be months. Has anyone had this situation?

mp327's picture
mp327
Posts: 3393
Joined: Jan 2010

This certainly wasn't my situation.  My docs were all in agreement that I needed chemo/radiation.  In your situation, I'm not sure what I would do, but I agree, I wouldn't want cancer!  How often do they plan to do exams on you for monitoring?  If you choose the wait and watch approach, you would want to be monitored very closely, as you already know.  I hope the answer will clearly come to you as to what to do.  Sometimes things are not as cut and dried as we would like them to be.

Clovergirl
Posts: 48
Joined: Dec 2012

it certainly isn't cut and dried! LOL We didn't discuss how closely they would monitor but It will definitely be one of the first questions I ask.

LaCh
Posts: 558
Joined: Dec 2012

Basically, all choices have consequences. For my part, I value quality of life over quantity of years and while I would never advise anyone else about what to do--I manage my own life as best I can and stick with that--  I can tell you that every time--every time that I lie on that radiation table for the treatment I think, "What on earth are you doing to your body?" and the doubts that I had going in become louder and more insistent with time, no less so as the side effects, pain, anemia and "unknown, unseens" pile on.  I'm sick and I feel sick and recognize that although some (an hopefully all) of the things that I feel will improve with time, there are latency periods of decades in which other problems may arise from what I'm doing.  So please understand, I'm not advising you one way or the other, I'm just sharing some of my own feelings and thoughts on the matter.  

Clovergirl
Posts: 48
Joined: Dec 2012

So much of what you say is how I feel. Sometimes quality is better than quantity. At the moment I have no idea what I will choose to do but I am going to pray hard on it!

Clovergirl
Posts: 48
Joined: Dec 2012

So much of what you say is how I feel. Sometimes quality is better than quantity. At the moment I have no idea what I will choose to do but I am going to pray hard on it!

Clovergirl
Posts: 48
Joined: Dec 2012

So much of what you say is how I feel. Sometimes quality is better than quantity. At the moment I have no idea what I will choose to do but I am going to pray hard on it!

LaCh
Posts: 558
Joined: Dec 2012

Yes, for many people quality of life is more important than quantity. These are very personal and individual choices and you should be guided by whatever resources you feel serve you best, whether your logic, your gut, your religion, your tarot cards or something else.  These are your decisions to make and ideally, you hope that whatever you choose, those who love you will support you through them.  Both my parents died of lung cancer. My father had 18 months of chemo and suffered terribly throughout.  My mother chose not to treat hers and died two years after she was diagnosed, having had two good quality years in which she visited with friends and loved ones and had a bright and optimistic outlook.  This situation (ours) isn't quite the same, of course. This cancer is highly curable in its early stages but the longterm consequences of the treatment are potentially quality of life issues and no one can predict which group you'll fall into, those with minimal problems or those with substantial ones. This is my particualr dilemma.  I love life and I hope to live it a while longer but would I want a life of constant pain or frequent bowel issues?  Personally, I wouldn't.  But that's my choice and everyone chooses his or her own path. There are even more subtle questions.  I go to Spain and hike in the mountains, alone, in very remote and isolated areas. In a few years time, doing that will be very risky.  Should I fall and break a hip, I'd be in a pretty bad situation, there's no one around, there's no cell phone coverge and that's a situation in which I don't want to be.  Part of the beauty of doing what I like to do, is the autonomy and indenendant way in which I do it.  Now, the inability to do that any more isn't a deal breaker for me in terms of choosing or rejecting treatment, but simply illustrates how the issues aren't all straightforward but are often quite nuanced. Secondary cancers, longterm pain, bowel issues, hip fractures.  These are all post treatment possibilities but no one knows which scenario one will find onself in until one does.  That's the rub.

Clovergirl
Posts: 48
Joined: Dec 2012

LaCh I really appreciate your thoughts.... but enough about me. How are you doing??? how are you managing with treatment?

LaCh
Posts: 558
Joined: Dec 2012

Well, let's see. I have exquisite pain whenI go to the bathroom for which there are no words in any language that I'm aware of, I'm creeping toward a 7 hemoglobin which is the point at which you get transfused (according to my gastroenterologist), climbing the 5 flights of stairs to my apartment is a hugh challenge and instead of walking briskly from the street level to my house, I have to stop on every landing, walking more than a block in the city is exhausting, I have a painful neuropathy in my knee from the 5FU.  So all in all I feel like sh*t.  BUT...  I feel mentally strong and see this situation the same way that I saw it at the outset, as an opportunity, a vehicle for change in some personal ways for which I've fallen somewhet short in the past. My attitude is that everyone gets something.  Live long enough and that's a guarantee. What isn't a guarantee is how you respond to it and that will define you more than the disease will.  I've set my sights on a goal and haven't lost sight of it, so while I don't like the situation, I see it as a huge opportunity for me for some very positive things.  In short, physically it's very difficult and I still have 16 radiation treatments and one round of chemo to go; I'm not even halfway done.   But mentally, I'm doing well.  As for the doubts I have about what I'm doing?   Yes, I have grave doubts and have come close to pulling the plug on the entire thing more than once. I can live with pain during treatment.  I'm not sure I want to live a long, cancer free life with major quality of life issues, and what defines "major" or "minor" is a personal matter. 

Marynb
Posts: 1134
Joined: Aug 2012

My tumor was also 2 cm., but there was never any doubt about treatment. I went to 2 comprehensive cancer centers and they both said that any cancer should be treated with the protocol. So, I chose the best hospital and went for it. I would highly suggest that you get a second opinion pretty quickly. If there is agreement, your choice is easier.
My experience was probably pretty typical and from my prospective, the treatment was well worth the limited peace it gives that there is a good chance there will not be a recurrence of this cancer. I am an optimistic person and pretty tolerant of pain, so I did not think it was too bad.
Bottom line, I would get a second opinion!

Good luck!

horsepad's picture
horsepad
Posts: 103
Joined: Apr 2012

I agree, get a second opinion.  My father and sister died of cancer and neither chose treatment.  They both died in less than a year.  I looked at how my dying will effect my family, especially the young grandchildren I am raising.  My situation is different, I am stage four so side effects from treatment wasn't a consideration.  I choose the aggressive approach.  I had a liver resection, even though the one spot on my liver appeared to be dead from the chemo because Drs said removal will increase my survivial rate 20-30%.  The tumor board also considered taking out my lympth nodes which can cause major side effects and could leave a person unable to walk much.  I am a very active widow who must climb 3 flights of stairs to reach home, so being unable to use my legs much would have effected EVERYTHING, I would have had to sell my home, horses etc.  How would I be able to care for my young grandchildren alone?  I decide  I was going to do whatever they said.  They ruled against it and decided to have a wait and see approach.  I accepted that, although sometimes I wonder if I should have demanded they be removed and deal with the side effects.  It's a hard choice to make.  For me, it was who and why am I fighting this was the decision maker, not so much the side effects. 

horsepad's picture
horsepad
Posts: 103
Joined: Apr 2012

I agree, get a second opinion.  My father and sister died of cancer and neither chose treatment.  They both died in less than a year.  I looked at how my dying will effect my family, especially the young grandchildren I am raising.  My situation is different, I am stage four so side effects from treatment wasn't a consideration.  I choose the aggressive approach.  I had a liver resection, even though the one spot on my liver appeared to be dead from the chemo because Drs said removal will increase my survivial rate 20-30%.  The tumor board also considered taking out my lympth nodes which can cause major side effects and could leave a person unable to walk much.  I am a very active widow who must climb 3 flights of stairs to reach home, so being unable to use my legs much would have effected EVERYTHING, I would have had to sell my home, horses etc.  How would I be able to care for my young grandchildren alone?  I decide  I was going to do whatever they said.  They ruled against it and decided to have a wait and see approach.  I accepted that, although sometimes I wonder if I should have demanded they be removed and deal with the side effects.  It's a hard choice to make.  For me, it was who and why am I fighting this was the decision maker, not so much the side effects. 

OMG 1012
Posts: 61
Joined: Dec 2012

I had an almost 2cm tumor that was removed during hemmy surgery.  I was staged as Tis and NOT T1 because it was insitu and well differientated.

I went to several Dr's and got 2nd opinions as well.  Everyone was in agreement that I should be treated.  

The surgeon did say that we could go with the arguement to  just watch and see if we wanted to but he did recommend treatment.  

The treatment recommended for me was to do the chemo 1st and 4th week as per the anal cancer protcol

BUT to just  treat the anal area with RAD and NOT the lymph nodes. (I had PET Scans and CT scans done and all were clear)

I have 4 more Rad TX to go and i am feeling OK.  I am still working part-time ( I have a GREAT job)

I got lucky that the worse part of the treatment, which was approx 5 days after the last chemo TX was the worse for me and that was the week of Christmas/New Years and my office was closed.  I do feel  quite fatigued but i am not gong to let this beat me!  

It is important to get opinions because everyone is different.  This site has given me so much information that i cannot even imagine trying to make it through this without all the wonderful posts from everyone.

Best Wishes  XO

qv62
Posts: 403
Joined: Nov 2012

I have not been on the board for too long and haven't logged in to recently due to the holidays  and kids off from school and others home from college as well as work etc. but welcome ! The people on this board have been a wealth of info for me as well as a great sounding board and most importantly a huge emotional support system, so you are in a good place. I am sorry to hear of your situation, I actually have a very similar situation to yours, my problems started back in 2009, I have been dealing with tumnors, pre-cancer, squamous cell carcinomas which have resulted in numerous surgeries, I am monitered very closely and have had several recurrences, I switched doctors and hospitals in 2011 hoping to stop the recurrences but I am right back in the OR again this week, I am scheduled for another surgery this Fri. in which I will spend a few days in the hospital and 4-6 weeks recovering at home. My case has been reviewed by the tumor boards in both hospitals and in my case they are holding off on the chemo-radiation due to the side effects at this point being it is still pre-invasive. I just turned 50 and it has been a rough couple of years, my last surgery was a year ago and quite extensive, it included not only removing the growth with wide excisions but also flaps and plastic surgery, a week in the hospital and six weeks of not being allowed to sit. I don't know if they are considering surgery in your case  but I can fill you in on what to expect on recovery if you wanted the info.. Keep us posted, wishing you the best.

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