CSN Login
Members Online: 5

You are here

recurrence 12 mo post chemo - scared

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Hi there - I was diagnosed with stage IV colon cancer post surgery in June 2007. They removed the colon cancer (1 in. tumor), the omentum, and my ovaries as I had a 3 lb tumor in left ovary. Went through 6 months FOLFOX treatment and was fine until my CEA started rising in November. It's now over 15 and I had a PET Scan revealing 2 or 3 small tumors (< 1 in. each) in the mesenteric fat. Dr. says no to surgery to remove the tumors but wants to do Xeloda, Oxcyliplatin, and Avatsin for, as he says as, long as I can take it.

Anyway, what I'm hoping to hear from others that they've had these minor recurrences and are still able to live productive lives.

I'm also in the process of getting in to see a colon cancer researcher at USC for a second opinion, as I'm not wild about my Dr's attitude at the moment. I plan on fighting this for all I'm worth. Any support would help. My husband and I have been on a roller coaster ride this weekend. I was so hoping for a normal Christmas this year, after finishing chemo on 12/21 last year.

Traci

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

He is the BEST!!! He specializes in colon cancer that didn't get nailed the first time around...

I can't help beyond that ...I was only a stage III...

Hugs, Kathi

dorookie
Posts: 1736
Joined: Jul 2007

Hi Traci,
I am in the same boat as you, was originally DX in Jun 07, NEDs in Jun 08, reoccurance in Nov 08 to the lungs. Had surgery to remove tumor, now doing Xeloda chemo. Just started two days ago. I wish I had some great info for ya but all I can say is your not alone! I will keep you in my prayers.
God Bless
Beth

taraHK
Posts: 1961
Joined: Aug 2003

Hi Traci,

I am so sorry you have had this recurrence. In some ways, I think news of recurrence is more devastating than the first diagnosis (well, I guess that's debatable!).

If you want to hear from others who have had recurrences and are still living productive lives -- I am your girl! I was diagnosed with Stage III rectal cancer six years ago. Two years after my initial surgery, I had a recurrence in my lung-- a solitary met. I had surgery and chemo. 18 months later, another solitary met. Same treatment. And 18 months later, another -- same treatment.

OK - -it's not great. The surgery is not a small thing, and the chemo is no ride in the park. But, I have been extremely lucky and blessed in that I have had quick and uneventful recoveries from the surgeries (I'm talking walking around the track one week after lung resection). And I've also tolerated the chemos well, so far. During treatment, I have been able to continue working, exercising, socializing (albeit at a slower pace). And, when I am not in treatment -- I travel and seize every opportunity to enjoy life. The biggest deal for me is that my kids (two boys) were 10 and 12 when I was diagnosed. They are now 18 and 16. I have enjoyed every second of these six years with them (yes, even those "teenage" moments! Happy I was around for them.

I have written before on this board about embracing a "chronic disease model". It's not great to have a 'chronic disease'. But, I can live like this for a loooong time. Bit of treatment now and then when necessary. In between, enjoying a normal life enthusiastically.

Of course I hope and pray this is the only recurrence you will ever, ever have. But I did want to share my experiences with you.

Love,
Tara

ps I was diagnosed around Christmas, and had one lung surgery at Christmas. So, it's a "bittersweet" time for me, too. This year, my Christmas tree is decorated completely and only with angels -- which my mother and her friends have been sending me for the last two years.

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

husband dx nov 07 stage 3c chemo 6 months two months after chemo had pet scan dr changed dx to stage 4 recurrance to the stomach liver kidney and new tumor in sigmoid area that was more devastating then the first time. the doc said seeding was taking place at the time since it had preforated the colon in the first dx i am scared i pray everyday that the cancer will go away but it dosn't look good at this time

michelle

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Love your pic, Traci! I was initially diagnosed in 2004. had a resection and 6 months chemo. Recurred on my right ovary in 2006 (I wish I had a weight to state! They told me the size, the size of a soccer ball, but not the weight!). They also removed my omentum, my appendix which hadn't been removed the first time around, and various fat implants. Currently, my CEA continues to rise, with nothing significant showing on my scans. I am going to look for a second opinion first of the year since my doc wants me to go back on regular chemo and I am just not convinced that's the best thing to do right now. I am with Tara, while the chemo and surgery aren't a walk in the park, time between is totally livable and enjoyable and certainly better than the alternative, at least for now!
mary

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

It's a scary ride and I'm trying to embrace the "chronic disease model" but I think I need more answers from an Dr. to start really feeling better about all this. I'm hoping that I can get in to see Dr. Lenz at USC soon. Your stories do help and I'm clinging to the fact that some folks do survive this.

Merry Christmas and Happy Holidays to everyone, Traci

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

The right doctor can make all the difference. When I was first diagnosed, I loved my oncologist and my radiation oncologist on sight. Both were recommendations from my gastro doctor. I was then sent (by the Cancer Center) to a local surgeon. We didn't mix from the first 5 minutes. I won't go into detail, except to say he did put in my port and I have had many issues with it, so I feel so much better that I fired him. Went back to the gastro doc and he gave me his recommendation for a surgeon (I should have asked him first!) I absolutely love this guy. Turns out he is the Denver expert on colon cancer resections, and almost impossible to get to see. My doctor greased the way and I was in the next day. So persevere! If you don't feel right about the doctor, fight for that second opinion. Remember, this is YOUR life and they are offering a service, albeit one of the most important decisions you will ever make.

Many hugs, Vicki

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Thanks Vicki. Your comments are so right on. I've got an appt January 19 with Dr. Lenz the head of colorectal cancer at USC. I heard him speak a few months ago and am really happy to meet with him. Of course it's outside my HMO, so I don't know how we'll procede after the initial consult but at least I'll be talking to someone else. Tahnsk, Traci

hopefulone
Posts: 1048
Joined: Jan 2007

Hi. I'm sorry the news wasn't better. I know how disappointing it is to receive this news. My husband was dx two years ago exactly 2 weeks before Christmas stage 4 with liver mets. Was given very little hope of surviving 2 years. We refused to accept that thinking. Had colon resection immediately after Christmas and told inoperable for the multiple liver mets he had and probably would remain inoperable, then had 9 treatments (same as what's proposed for you !) and able to have a liver resection in October 07 by the grace of God and our persistance in getting second opinion. Reoccurrance in liver in July 08, and just had rfa done a month ago on liver reoccurance again by grace of God and our persistance. Results appear successful . Just had a ct yesterday and although awaiting final word on other areas, doc says tumor appears removed successfully. We have has quite a roller coaster ride and I won't bore you with all the details, but through it all he has maintained a positive attitude and been blessed with a good quality of life. Worked and works full time and living as "normal" of a life as we can. Keep your positive attitude and remember a reoccurrance doesn't mean you can't beat it! Keep the faith. God Bless.
Diane

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Diane - Thanks for the kind words. Each positive story gives me another ray of hope. I'm determined to fight and am not willing to take my Dr's word without another opinion. I hope your husband continues to do well! May you have a belssed Christmas. Traci

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Traci,

I am sorry you are dealing with this. I cannot share from experience but I just wanted to recommend a really good book:

Spontaneous Healing by Dr. Andrew Weil.

I think he gives important insight to healing.

Merry christmas!

peace, emily

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Beautiful dog. It does look WAY too cold, though! :)
mary

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Traci: I agree with what Tara said about embracing the 'chronic model'. And you are doing absolutely the right thing in getting a second opinion from a respected specialist. I was dx Nov. 05 with FAP (a genetic form of colorectal cancer) that had spread to the liver. Then some nodules appeared on the lungs. I had to leave the country to get a liver resection because in Canada once your cancer has metastasiced to multiple organs surgery is not considered helpful by our doctors. Of course that is entirely debateable, and mostly by the medical community, not by me. A bone met was found prior to my lung surgery (another long debate with my surgeon). I then had surgery to remove the multiple nodules in my lungs. I am now three years out, and have had a recurrence in the liver and a couple in the retroperitoreum, but am currently working towards another surgery to remove the mets (again I may have to leave the country to do it). As long as you are feeling good and can fight, you fight and show doctors what the 'chronic model' really looks like. God bless. Monica

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hmmm Monica... maybe you should think of changing doctors. I, too, am in Canada and although my spread has not gone to the same places as yours, they found it had spread to my right adrenal gland and mets (or small spots) to my lungs. I'm not sure whether to call them mets or spots... 2 are definitely mets because they lit up the PET scan, the other 5 are too small to light up the PET, but are considered suspicious and that it won't be any surprise if they grow into the size where they will light up the PET.

Well, first was the shock/terror that it had spread and yes, I got the talk (which I'm sure our neighbours to the south get as well) that once the cancer has "seeded" or is found in other areas outside the primary colon location, then it is considered "Advanced Colon Cancer" and there comes a time when it is not beneficial to do surgeries. That was when I was given the dandelion analogy where, if you throw a bucket of dandelion seeds in a field and a couple of dandelions pop up, you can remove them and all looks fine. But chances are a good many more of those dandelion seeds are going to sprout up and you aren't going to be able to run around pulling them out, expecting them not to continue popping up all over, eventually taking over the field. So, there comes a time when you have to stop pulling them up... especially in the lungs because there are only so many surgeries you can do to the lungs before you would end up with no lungs.

Ok... so having had that talk (and you bet I was absolutely terrified.. to this day I still think I went into physical shock and left my body)... my oncologist kept saying, "Cheryl come back... we have to talk. We still have plans, but you have to come back and listen to me."

That's when she said that although the cancer had spread, she took my case to "Case Conference" amoungst surgeons, oncologists and various specialists and the recommendation was (if she thought I was physically strong enough) to remove the right adrenal gland (surgically) and then remove the 2 lung mets (surgically). She felt I was strong enough so the decision was up to me. Well, you all know what my answer was!!

I had the right adrenal gland removed last June... and we were preparing for the next step which was the lung surgery when she called me in to discuss another plan... and that is the RFA procedure for my lung mets. There is only one interventional radiologist that does this procedure in BC so she suggested that she refer me to him and it will be up to him to decide if I'm a candidate. Well, the appt. with him seemed discouraging when he went through the song and dance about the fact I have these spots in my lungs and chances are this is just the beginning, how he has to turn away 50% of the patients who are referred to him because he will only do this costly procedure if there's a chance for a cure or, if not a cure, then that it will prolong a good quality of life. So I was trying to prepare myself for him to say "You are in the 50% who I have to turn away because you have more than one or two mets"... but he said he was willing to do the two mets and that we'd keep an eye on the other spots to see what they do.

I'm getting that procedure done on Tuesday and I have to admit, I am very excited about it. It is a non-invasive procedure and will take a couple of hours to let the "conscious sedation" meds leave the body and then I will be back to my normal self and activities. I plan to go home the next day (31st), get into my new party frock and go celebrate New Year's Eve with my friends. THIS procedure replaces the original plan of having a lobe from my right lung removed and facing a 6 week recovery period.

Anywho... just wanted to clarify that it's not ALL doctors in Canada that subscribe to the "if it has metastacised to multiple organs, then surgery is not considered beneficial". For sure, it all depends on just where, how much, age, and all sorts of medical factors... but it's not a blanket statement that once it's metastacised that no doctor will do ongoing procedures.

I'm so sorry to hear you have to leave the country to get your procedures done!! Not only is that stressful having to leave the country... there's the incredible expense of that too!!!

Huggggggs,

Cheryl

Subscribe to Comments for "recurrence 12 mo post chemo - scared"