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Question from a newbie

livealoha's picture
livealoha
Posts: 4
Joined: Dec 2004

Hi...I am brand new to these boards. I was diagnosed in Dec 02 with stage 2 colon cancer....had a resection done in January 03...good margins.....sent on my way...then had a total hysterectomy in August 03 due to what they thought was ovarian cancer - turned out to be stage 1 uterine cancer. I had a one year follow up colonoscopy that landed me in the hospital for a month in December of 03 with a small bowel obstruction due to adhesions. A day and a half ago I had another colonoscopy which I am still awaiting the results of a couple of biospys my dr took. I too am afraid. I know I will survive another surgery if needed but I definately don't want to. None of my Dr's have recommended a Pet scan. I found my birthfamily and have found colon cancer and breast cancer to be a definate genetic thing. I am getting ready to move from all my doctors, surgeons etc to live on the Big Island of Hawaii. I would like any recommendations on whether I should have anything else done or looked at before I go or just go and enjoy life in paradise. (I now live in Las Vegas, Nevada). I already feel better just talking to others who know what I am feeling. Thank you all for listening. May God bless each and every one of you. Debbie

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Debbie,

You are so lucky to have found your cancers at such early stages. I, however, would find a good group of doctors and keep vigilence on your health since you have that dreaded inherited gene that makes you more susceptible to the cancer beast. You will need doctors to do complete regular checks. Enjoy paradise, but stay healthy so you can enjoy it even more and longer.

As for the PET scan, I'm a big believer in the PET scan. That is how I found my recurrance of my colon cancer just 4 weeks ago. I am back on a chemo regimen (no surgery since it is still in the lymph nodes and not in any organs) I caught it very early with that scan before it penetrated any other organs. Without the PET I would right now be thinking that I was NED since my CAT scans came back with the report "No Evidence of Metastatic Disease". Some doctors don't like to order them and some insurance companies don't like to pay for them. It just depends on how much you want to push for one and how much confidence you have in your doctors.

Enjoy your move to the islands. You already live in somewhat of a paradise (Las Vegas). Best of luck to you. This is the best support site around. Sorry you are having health issues, but welcome to the "semi-colons".

Best regards,

Kerry

livealoha's picture
livealoha
Posts: 4
Joined: Dec 2004

Thank you Kerry....I am so happy to hear that you have caught it too. I am still waiting on results of last biopsy but I think I will call my internist and see if she can order a pet scan before we leave. Aloha and mahalo again. Debbie

neon356
Posts: 137
Joined: Mar 2004

Hi, Debbie,... You've certainly had a busy two years being beaten up by the cure. I think the first 2 years are the hardest, and after that the body begins to really snap back into good health much quicker. I guess some of the people you'll see here might not agree, their fight has been a lot harder, and recovery a lot longer. Also, I think that we have to try and not think too far ahead, it's hard enough just making decisions and taking care of the things tht have to be done today. Wait til the Dr tells you the results of the biopsy. If it's nothing than there was nothing to waste your time worrying about. If there's a problem, you'll deal with it then with your doctor's guidance. I don't see anything that you should be doing that you aren't. When you move. it would probably be a good idea to take all of your records with you if you gat a new doctor there. Have fun in paradise,.... Carl

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Aloha nui loa, Debbie -

Moving to da kine Big Island yeah? Kona Side or Hilo Side? I lived there (Hawi) for a while many years ago... loved it.

anyway, if I were a betting man... colon, uterine, and family history that also includes breast cancer I'd bet you're an HNPCC person like me. Sounds like you are doing an excellent job of surveillance which is something we need to do since "it's in our genes".

I gotta agree with Carl - be sure to pack ALL of your medical records and have a ball!

Cheers!

- SpongeBob (no-ka-oi!)

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Aloha nui loa, Debbie -

Moving to da kine Big Island yeah? Kona Side or Hilo Side? I lived there (Hawi) for a while many years ago... loved it.

anyway, if I were a betting man... colon, uterine, and family history that also includes breast cancer I'd bet you're an HNPCC person like me. Sounds like you are doing an excellent job of surveillance which is something we need to do since "it's in our genes".

I gotta agree with Carl - be sure to pack ALL of your medical records and have a ball!

Cheers!

- SpongeBob (no-ka-oi!)

taraHK
Posts: 1961
Joined: Aug 2003

Hi Debbie,
I'm also a great believer in PET scans. It is expensive but if you can cover that somehow and persuade your drs., you might rest a little easier. I am sure you have a routine schedule for mammograms. I'm sure there is also excellent care in Hawaii, in terms of follow-up or anything else you need. Take care.
Tara

steved
Posts: 836
Joined: Apr 2004

DEbbie, sounds like a rough time that you have dealt with admirably. PET sacns can add furhter reassurance to people about recurrence but aren't part of the routine follow up for many- certainly here int he UK they don't do them routinely. They aren't considered to add much more than CT adn ultrasound and can confuse the picture as they aren't 1005 accurate (some false psoitive results do happen) but as many say above in some cases they can be life saving. It is very individual so talk to your oncologist about it.
With respect to the family history it may be worth being genetically tested for HNPCC which is related to familial colon cancer and also increases the chances of gynaecological cancers eg uterine. If positive it means you may need more frequent testing for cancers adn your family would also then need testing if they wanted. There are down sides to it though as having hte gene may affect aspects of life insurance etc so you need to weigh up the pros and cons of testing. We were sent for a thorough talking to with a genetics nurse before deciding but have gone for it as we have a six month old son we want to protest from this illness if possible. The test can usually be done on the tumour they removed.
Feel free to email me if you want more info. Best of luck with the move- sonds fabulous and a great way to get on with your life after such a hard period.
Steve

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Steve & Debbie -

I was tested for HNPCC - as were my mother and all 6 of her siblings, their children (the ones who havethe gene), and my sister - as part of the Human Genome Mapping Project through the National Institutes of Health (NIH). Steve, you make an excellent point regarding life - but also health - insurance; "Pre-existing condition". Since so many of my family and extended family were tested I was able to see the gammit of responses people have: Anger at having the gene, remorse for having passed it, extreme guilt for NOT having it, fear of getting cancer because of it to the point of actually considering a hystorectomy (at age 30-something)...

And I asked myself what did people gain from being tested? They knew they needed to pursue a rigorous surveillance regime if they tested positive for the gene. Of course, just because you have it doesn't mean you're going to GET cancer. Does knowing they have the gene keep them from getting cancer? No. It merely underscores what they should be doing anyway: maintaining a rigorous surveillance program. And what of those who were tested and found to be negative? Well, there are - if memory serves correctly - 5 possible mutations that can cause HNPCC. Even NIH didn't test for all 5 ($$$). What if they don't test for a particular mutation that you have and you test negative, yet still have a mutation? You become complacent and don't keep that rigorous surveillance and BANG - suddenly you have colon cancer anyway in SPITE of being "nagative"...

Honestly, speaking as one who has had the genetic testing done, I really don't see as many "pros" for it as I do "cons", but it is a very personal decision to make. I'm not trying to influence anyone's choice - just present some facts, observations, and my own opinions.

And you know what they say about opinions...

Food for thought.

- SpongeBob

steved
Posts: 836
Joined: Apr 2004

Thank you Bob for expanding on this topic as it is a very complicated one with many aspects to consider. My wife and I though long and hard about testing before going for it. The upside of knowing you have it is about surveillance above and beyond what the 'average' preson should be doing. If you have HNPCC colonoscopy should be five yearly but there is also a need for vigilance for other cnacers. These include gynae ones in women but also gastric in men. My local geneticist has recommended gastroscopy if I test positive- not something I would have done (or could get done without paying) if I don't have the gene. For relatives of people with bowel cancer in general they should have a colonscopy as a one off around ten years younger than the sufferer was diagnosed. If they have teh gene then screening should be increased to colonoscopy every 5 years.
Thus we decided that it does change the management not only for me but also for relatives (including my 6 month old son)if they test positive.
I accept the point about possible complacency of they test negative but this should be discouraged as just having a first degree relative with teh cancer increaes their risk whether they have the gene or not eg if I don't have the gene my brother still has a 10% chance of getting colon cancer because I developed it under 45.
I am rambling a bit as I am still trying to get this sorted in my own head. by the way I am also being tested for attenuated familial adenomatous polyposis (AFAP) as a genetic test- has anyone else had this test? It is particularly being done because I had cancer at age 31 and because my parents died young of unrelted causes I have an unknown family history.
Thanks for the space to ramble and sorry Debbie for hijacking your posting,
Steve.

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Steve -

I was tested for AFAP in addition to HNPCC because I had multiple masses. For those that are not familiar with AFAP, typically AFAP manifests itself in dozens to hundreds of polyps. Many people opt for a preventive colectomy even if they do not have active cancer.
Fortunately, I was negative.

Steve, you make some very valid points about increased levels of surveillance and not only in the colon, but also in the entire digestive and reproductive systems, breasts (men included there), and pancreas.

Like I said, a very personal decision and it's nice to have the opportunity to see both sides of the coin.

Debbie, I'm sorry, too, for hijacking your string. But a good opportunity to talk differing sides of a cancer issue like this is a good thing.

Hopefully Steve's and my exchange was helpful.

Aloha

- SpongeBob

livealoha's picture
livealoha
Posts: 4
Joined: Dec 2004

Thank you Carl, Spongebob, Tara and Steve. It is just really nice to talk to other people. And it was great meeting someone that actually got to live on the BI......I am praying it won't be too much longer. And Steve, you did not hijack my post at all. It is great to learn new info. I appreciate all of it. I am now in the process of getting all my records together....there is no a lot of choice of Dr's on the island...especially colon specialist, oncologist....but I feel good and hopefully will not need anyone too soon (smile). We will be back to visit family here so can make yearly appointments here and then too, there is alot more choice on Oahu and that is just a short hop on an airplane....again, thank you all for taking the time to write back to my post. Merry Christmas, Happy New Year to all...Debbie

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

hi Debbie: I'm not an authority on PET/CT, but understand that a PET can't see anything much below 7mm..A CT can see down to 1-2 mm. For reasons not clear to me, they also have a procedure which allows the CT and PET to be combined-(probably to look at old and new lesions, and see what is active..) In your case, diagnostic scans may be premature. Although not conclusive, blood (CEA) is often a marker, and justification for Scans, etc.
I'm sure someone will correct me if I'm wrong, but
it may be too soon for the PET, and so far as I know, there isn't a test for the microscopic levels.
Bud

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Welcome Debbie. I also was dx'd stage 2 with surgery and 6 months chemo. I am often asked about our post-op follow ups done here in OZ. I get bloods done every 2 months and ultrasounds 3 monthly. I too get concerned whether ultrasounds are enough surveilance but in OZ the $$$$$ seem to dictate just how much testing gets done--CT'S/PETS.
I have not been tested for HNPCC but I firmly believe that cancer is a genetic disease. My mum passed from brain cancer and I am sure when she was younger she had polyps removed. Somehow I just think there is a link.
Pretty normal to be afraid Debbie--take heart sweetie--you are not alone there. I am in rem since feb. 04 and still get pretty worried when my tests are due. In fact the last bloods were just last week and CEA showed 4. Now off for ultrasound in early Jan.
Our luv and huggs to you Debbie--enjoy Hawaii and don't forget to keep us up to date.
kanga n Jen

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