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new tumor and back in limbo

qv62
Posts: 341
Joined: Nov 2012

Hope everyone is doing well, I have been off the board for a while, just everday craziness but back to say hello and update my unfortunate new development. Went to my colo-rectal surgeon this past week for a routine 6 wk checkup (last biopsy in the OR was done early Feb and deemed carcinoma insitu) I knew going in and told her when I arrived that there was a new growth, sure enough  after the examination she confirmed there is a new tumor howvever this one is different than my others and she clearly felt we need to radiate, she called in the chief of staff who looked as well and sided with her. My position has been that once invasion is confirmed in my biopsy I will be convinced, she scheduled me for the OR but explained that the invasion is underlying and the biopsy is not going to show it, the agreement was I would see the radiologist and if I came to terms with the radiation we would cancel the OR. Saw the radiologist Fri and she also said this is different and this has convinced her to radiate. I still haven't cancelled the OR but will hold off till Tuesday, by then the surgeon, radiologist and pathologist will have met and my case will have bee discussed at the tumor board meeting. Once again feeling so in limbo

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I'm so sorry that the new growth is thought to be a tumor.  I don't quite understand why a biopsy would come back inconclusive, but obviously, all of your doctors are in agreement that it needs to be treated with radiation.  I know it is a scary thought.  Sometimes I think I was fortunate in that I did not know much about the treatment at the time I was diagnosed.  Not that I wasn't frightened enough, but knowing how difficult it is would have made things worse, I'm sure.  So, you are in a position of having that awareness and I can understand having to take some time to accept the fact that you will need to undergo that same treatment.  With all of that said, just remind yourself of how many people you know on this board who have been through it and come out the other side, now living normal lives.  There's no doubt it will be rough at times, but the fact that 6 weeks is about the maximum amount of time anyone undergoes this, it is very doable.  I hope you will know more by Tuesday and a plan can be put in place.  I feel in getting to know you on this board and all that you have already endured that you definitely have the strength to get through this as well.  I will keep you in my thoughts and prayers and I hope you'll keep us posted.  Best wishes to you.

qv62
Posts: 341
Joined: Nov 2012

Thank you both for the response and encouragement, I am having a very tough day (lots going on besides my health, family issues etc) and needed to have some words of wisdom along with a pep talk. In answer to the inconclusive biopsy, both the colo-rectal surgeons and the radiologist feel that the invasion is underlying and to keep biopsying is more damaging to the sphinchter, they feel the biopsy will not prove invasion since there are invasive cells under the sphinchter and to get invasion on paper they would need to remove the sphinchter (not an option) to prove it. The three of them are convinced this is an invasive cancer needing radiation and very different then all of my other growths . I  know the treatment is only 6 weeks but there seems to be a concensous that a few weeks following treatment can still be grueling ? My dilema is that I have a college graduation 5 hours away from home mid May and a high school graduation the end of June, I can't wrap my head around the best time to start treatment if I go foward with it so that I am able to be comfortable at both of these milestones, any advice is greatly appreciated

z's picture
z
Posts: 1273
Joined: May 2009

I understand now about the sphinchter.  

If you start now you will be almost done by mid May.  I had a couple of days where the machine was broken and couldn't have treatment, also no treatment on the weekends.  So in other words you can skip a couple days with no problem.  

 

I was able to go back to work after a month and I have a physical job.  You must treat the area and take the pain meds as prescribed.  It will be tolerable.  I should say it was tolerable for me, as everyone is different.  

 

Your life is more important and you will be able to go to your functions and get rid of the cancer at the same time.  I wish you well. Lori

qv62
Posts: 341
Joined: Nov 2012

they told me I would have to come in for the simulation and nursing staff consultation so that appt would be next week if they can, then the scans, then they said it would be 2 weeks before I start, that's where the calender confusion comes in

z's picture
z
Posts: 1273
Joined: May 2009

Why wouldn't a biopsy confirm cancer?  I don't understand that.  I hope you will get an answer that would make you comfortablle with the tx they want to do.  Limbo is the worst place to be, once you know how to proceed it feels better to know your on your way to being cured.  I wish you well Lori

qv62
Posts: 341
Joined: Nov 2012

@ Z yes it is very hard for me to accept that the biopsy does not confirm, but I"ve had them pretty baffled and perplexed these last couple of years, the colo-rectal doctors tell me I am the most talked about case at the tumor board meetings and the radiologist tells me I am her most seen patient that she isn't treating, they've all told me my case in very unique, it's one thing to be popular but never wnated it in this way :(

pializ
Posts: 308
Joined: Nov 2012

I am sorry that you have had this news!

I understand that a biopsy could miss the underlying cancerous cells, but unsure of missing any in the tumour. But then, it's not my area of expertise. 

I am so sorry that you have had this journey, but hopefully this time, there will be a definite plan of action. Will you be having the 2 rounds of chemo in addition to radiotherapy,  I.e. the standard protocol? 

It probably doesn't help having concurrent family problems, but unfortunately, life has a habit of throwing us more than we want sometimes. However, you know that most of us here have had the treatment as per nigra protocol, and each of us have differed in our experiences. I was one of the lucky ones.I coped surprisingly well, and although I took analgesia,  the pain never got so bad for me to require morphine. Also, I had a double dose of radiation on my last Friday, & by the following Tuesday, I stopped all analgesia. For a short time, I experienced diarrhoea,  but immodium helped me manage that (just thinking of your travel needs). A satin pillowcase or any slippery fabric will help you getting in and out of the car ( probably seems a long way off yet, but you will be surprised at how quickly the treatment time goes). 

Meanwhile, you know you can ask anything here.

Best wishes

Liz

 

qv62
Posts: 341
Joined: Nov 2012

Thanks for the insight, I appreciate it. As for the chemo, the radiologist said we will talk about it after the tumor board meeting, so I will know more by Tuesday, we discussed it but she wanted to consult one of her associates before she laid out the plan. The timing still has me very confused as to which two weeks are the worst ? My kids graduations are so important to me, when the radiologist said some patients wind up hospitalized I of course didn't ask at what point in the tx, I think I was going into denial stage at that point

pializ
Posts: 308
Joined: Nov 2012

Well, it's true of course that some people do get hospitalsed, but it's fair to say, that they seem to be in the minority. Maybe someone who was could chip in. Some people i understand, find the 2 weeks after treatment the worst time.Trouble is,  none of us know how we will be, if you see my previous post regarding the first day of treatment,  my oncologist was far from encouraging. I realise that's not very helpful when you need to be at those graduations. maybe you will get more clarity about the plan and make a guess from that, but it will be that, just a guess!

Take care

Liz

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

As odd as this sounds, I feel this is really good news. Finally a plan of action that will make this go away. I really agree that operating on this poor sphincter of yours, if it isn't going to do any good biopsy wise, unless they damage it more, is a lousy idea.

I am concerned how this came up and became large enough for you to feel it so fast. I would say wait until after the graduation since it's right around the corner, but since we really are dealing with something growing in you and we don't know how aggressive it is, my feeling is to "give it to God" or "let go and let God" when it comes to the graduations. If it's meant to be that you can make it, you will be there. I know you are strong like an ox anyway.

But the chemo/radiation treatments, which I think you should get started on asap, will literally give you a new anus. Mine works waaaayyyyyy better than my old one did for years and I am amazed how I can "plop" down in a chair now without a care. You will be able to do these things too.

They will be able to monitor the tumor while they are radiating. I had a lot of radiation because I was stage 3 with lymph node involvement. You may not need as much and may not have a hard time with your recovery.

The two weeks following the last treatment was hardest for me and I was hospitalized for three days due to low counts. But again, I had a lot of radiation.

So we should go celebrate soon! You are going to get well. FINALLY! That's the best news I've heard in a while.

Fondly,

Sandy

eihtak
Posts: 887
Joined: Oct 2011

Ugh!!!!! Schedules are so frustrating sometimes! I am sorry for all things related to your current frustrations. I have 5 children and missing the graduations would have bothered me as well, but during my treatment I did encounter some minor complications and was hospitalized about ?? week 2. Unfortunately I was there for 3wks and then transfered to a nursing home for 2months. Know that this is NOT the typical course for most. I was stage 3b and had colostomy surgery prior to treatment and then the radiation caused some issues to my ostomy as it was probably not fully healed and ready to handle all the digestive effects.

I missed a couple key family events during this time but am home, alive and healthier than ever before. In the past couple years since being well we have celebrated a wedding, several births and baptisms of grandchildren, holidays, birthdays and the safe return of a deployed son-in law.

I will keep you and your family in my thoughts and prayers that everything falls into place.

katheryn 

qv62
Posts: 341
Joined: Nov 2012

Thank you both for the input, all the advice, opinions, personal experiences and encouragements are what keeps me going, I appreciate everyones responses. I spoke to the doctor's secratary this afternoon who told me my colo-rectal surgeon spoke to the radiologist, the pathologist and some other ologists lol and is working on a plan, she is just not sure if my case will be presented tonight to the tumor board or next Monday, well if that didn't knock the wind out of my sail I don't know what did. This conversation with the doc started last Wed and I have been waiting anxiously since then thinking a plan would be set by tomorrow, I may be my own worst enemy but I think I may go over the edge if I have to wait another week for an answer. I know you have both been through so much so I hope I don"t sound like a big whiner, It's just that I have been dealing with this for 5 years and I am no further along now then I was 5 years ago. I am a strong and determined person but broke down yesterday for more reasons then all this,( too many things going on at once that are unrelated) but today I picked my head up and moved on however when she said I may not have an answer till next week I felt like I hit the wall. I will lift it up and be faithful but I sure hope they are discssing me at that meeting right now :)

eihtak
Posts: 887
Joined: Oct 2011

You do not sound like a big "whiner".....more like a big "winner", and thats what I know you'll be when this is eventually all a thing of the past!

I can not even imagine having this on my mind as long as you have. I had symptoms for some time before being diagnosed but was so pre-occupied with "life", (my husband was also in treatment for cancer) that once diagnosed and a few things put in place, my treatment started.

Soon they'll be telling you that you need to limit your stress as its not helping your situation, (lol).

I have my fingers crossed that you are the topic of conversation right now and your wait for a plan will soon be over!

katheryn

qv62
Posts: 341
Joined: Nov 2012

Many thanks, my fingers are crossed too, I will update tomorrow one way or another.

qv62
Posts: 341
Joined: Nov 2012

spoke to my colo-rectal surgeon today and unfortunately the call was a bit difficult as I was at a lacrosse game with lot of noise, the doctor was on a speaker phone and I on a cell, it was that or wait till Wed and the waiting is making me crazy, anyway I am scheduled to see her next Wed for consent then off to pre-op testing and a pet scan, I am scheduled for the OR on Thursday so they can dig deeper into the tissue, if I got the rest right it is to get a handle on how much chemo-radiation will be necessary and they will not remove the mass, I am going to try and get some clarification from the nurse tomorrow

z's picture
z
Posts: 1273
Joined: May 2009

Okay now you have some answers, of course not all of them.  I hope Wednesday comes very fast for you.  Just know what ever it is it will be taken care of.  I completed tx on 6-30-09 and I am perfect, lol.  I have no evidence of cancer.  I was a stage II NOMO, in other words about a 2-3 cm tumor.  I wish you the best, and I know the waiting for answers is the hardest part.  Lori

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

It sounds like things are going to move forward towards treatment for you.  I hope that once and for all you can get the treatment, have no more limbo in your life, and get back to living without having to have surgery on a frequent basis.  Please keep us posted and know that I wish you all the very best.

qv62
Posts: 341
Joined: Nov 2012

Thank you both for the words of encouragemnt, I have some very busy days coming up so I think Wed will come fast, the hard part will be waiting on the pathology results as my results in the past have ranged anywhere from 3 days to 2 weeks although the surgeon told me she was going to try and have the pathologist in the OR, maybe that will expedite the process ?

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

You have been in the hardest part for five years!!!!!!!! Arghhhhhhhhhh! 

You have not been whining my dear friend. Your courage is staggering to me. I can't imagine.

You are almost there. I know it feels like you are no further along but you truly are, all this has not been for nothing.

Try to remember (although it would be hard for me to do this) that they are discussing your tumor at the "tumor board" at one of the best cancer hospitals in the world. They are taking you seriously and doing everything possible to get it right. To me this is good news. Try to have what I have none of naturally given - patience - just a little more.

Wednesday is right around the corner.

I will be at MSK Monday and Mt. Sinai Tuesday but the rest of the week I need not go in. Yeah!

But I hope we will soon hook up again. Please let us know what you know asap.

Fondly,

Sandy

qv62
Posts: 341
Joined: Nov 2012

Thanks Sandy you always have a great way of putting everything in perspective, hopefully I will have some answers soon and yes I am learning the hard way to have patience, I've come to realize there are some things you can't change and waiting is one of them. I wish you the best on Monday and Tuesday, too bad my days this week are Wednesday and Thursday but I have 2 more appts this month, one with gyn and one with pain management, once I get through this and see that I don't have to reschedule them I will message you in case you have similar appts and we can do lunch again :)

qv62
Posts: 341
Joined: Nov 2012

Met with my surgeon on Wed to go over the procedure, she said she was trying to get the pathologist to be in the OR, fast foward this didn't happen so I am not only back to waiting on pathology reports but quite dissapointed since I really thought the pathologist would be there. She said she would take several biopsies and use a bit of a different technique so we'll see what that brings. in the meantime she told me this would be my last round of biopsies and we have gone as far as we can without doing more damage, that leaves 2 choices, treatment or a colostomy, I haven't wrapped my head around making any decisions until the results are in. I also had a ct scan and a pet on Wed, biopsies were yesterday. got home last night and actually slept well and rested all day. Now waiting it out....

z's picture
z
Posts: 1273
Joined: May 2009

Once you have the results I hope you'll reach a decision as to what to do and once you do that you will be on your way to healing.  The waiting is so difficult for me.  But it is what it is and fill up your time so it will go fast.  I wish you well. Lori

qv62
Posts: 341
Joined: Nov 2012

Thanks Lori, I have been saying a lot of "it is what it is" lately

 

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I'm sorry that the pathologist could not be there to give you immediate results.  I think we all agree that waiting for such things is the worst!  We are here for you, no matter what!

qv62
Posts: 341
Joined: Nov 2012

Thanks for always being here, you and so many others on the board have helped me through these tough times and helped me to maintain  not only my patience but my sanity as well :)

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