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kathyintoronto
Super Member (250+ posts)
418 Posts
Gratitude: 114
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 Posted - 06/17/2012 : 09:38:32
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Hello folks:
As I said in my new member post, I joined MT some 7 years ago. I don't post as often as I want to or should (mostly due to time constraints). I "have returned" as it were due to my struggles with cancer since being diagnosed last fall. I was doing ok with this until some recent awful news.
Any and all help and support that you wonderful people of MT can offer would be most appreciated. Thank you so much Jody for offering your health care expertise - we are blessed by your knowledge and joy in helping others.
Here is the tale.
Last August I found a bump on my rump, I thought it likely an abscess or cyst. The GP send me to surgeon 1 who referred me to surgeon 2 (lower torso specialist) who announced it to be a fistula. Apparently these are relatively common though I had never heard of them except in connection to the withers of horses. In messing about with this they determined that I had an anal squamus (sp?) carcinoma. Apparently this type of cancer is preferable (in terms of survival rates and likelihood of requiring a colostomy) to colorectal cancer. After some hiccups relating the fistula I faced treatment with relative optimism.
35 radiations sessions later (daily Monday to Friday, no breaks) augmented by 2 week long sessions of chemo (relatively benign type) I was a wreck.
YOU MAY WANT TO SKIP THIS PARAGRAPH IF YOU ARE SQUEAMISH
I was fairly lucky not to have severe skin burns, what I had was bad enough. I did have horrible internal burning of ALL the "tubes to the outside". I was extremely weak and had trouble eating. Pain meds made me nauseated and had me vomiting once a day or so. I was very tired and spent probably 16 hours a day on my back. The pain med (like most opiods) made me constipated which then put me into agony when trying to have a BM. When I finally did manage to go, due to the aforementioned burning, I ended up in awful pain. Oh yeah last (but certainly not least) I developed symptoms similar to severe IBS.
I finished treatments on February 1 and proceeded to get considerably sicker for the better part of a month. After that I slowly started to improve (VERY slowly) so that by the time I went for my 3 month check up I thought I had turned the corner and would soon be feeling well enough to live normally again.
After imaging (CT & MRI) studies were done, on May 17th I saw radiation oncologist who told me that all my lymph nodes were clear and that the tumor itself had shrunk to be very small and that it would likely continue to shrink in the coming months After discussing what this all meant and dealing with residual side effects I was sent off with another follow up appointment for 3 months later. I left feeling happier but there was some niggling sense of waiting for the other shoe to drop, which it indeed did.
A week later I saw the medical oncologist expecting it to be a non event. I was so casual about this that I did not bring my husband with me as I had at the last appointment.
After telling me the same thing that doc 1 had, doc 2 dropped the bomb that `the NODE on your lung` (what node, I screamed in my head) `has grown from 5mm to 12mm`. I needed a biopsy (getting that tomorrow) to see whats what. I am encouraged by the information that 60% of these nodules are not malignant.
So there is my tale of woe. I am still angry that I was not told about the 5mm node when first diagnosed (6 docs had input on that) and doc1 didn't tell me about the increase at my appointment on May 17th. I told everyone (most importantly my 20 yo daughter and more fragile-wrt bad news-22 yo son) I had the all clear and have told few about the nodule.
Kathy
"The only thing necessary for evil to flourish is for good men to do nothing"
Martin Luther King Jr.  |
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| chelle25
Incredible Member (2000+ posts)
7607 Posts
Gratitude: 912
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Posted - 06/17/2012 : 11:47:19
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| Oh Kathy what a brave lady you are. I will keep you in my thoughts and prayers. Thank you for sharing with us. |
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| kathyintoronto
Super Member (250+ posts)
418 Posts
Gratitude: 114
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Posted - 06/19/2012 : 08:46:09
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Thanks for your compassion Chelle, prayers are always needed and certainly appreciated. Kathy
"The only thing necessary for evil to flourish is for good men to do nothing"
Martin Luther King Jr. |
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| jodartha
Incredible Member (2000+ posts)
4755 Posts
Gratitude: 1075
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Posted - 06/19/2012 : 11:57:35
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Hi Kathy...
I am sorry that you have had such a hard time lately. A diagnosis of cancer and then associated chemo and radiation is quite a stressful series of event. Honestly, compared to the average person that describes such events..it sounds like you have handled it all quite well.
Honestly I can't figure out why someone didn't tell you about the other nodule. Perhaps it was a matter that one surgeon assumed that another told you. Usually your primary specialist will share the information. (not your primary physician). But I suspect that you had too many docs in the pool.
To prevent this from occurring again, you may want to ask who is your primary oncologist. Often times a patient has trouble keeping up with all of their doctors. IT is very common. A good medical team will assume this job for you. I encourage you to ask questions...including why you weren't told your other diagnosis. Perhaps the reason is that they ASSUMED it wasn't cancerous. Either way, it is their obligation to communicate all medical issues to you so you can make INFORMED decisions.
I often encourage patients to write down all their questions and physicians and communications in a notebook. This helps to clarify and answer questions that may recur later because you forgot what they said at the time. While you write things down, it will solidify what they are actually saying to you...and allow you to seek elaboration if necessary.
Sorry to sound technical...but I want you to feel like you have someone that is really listening to you. I will be interested in knowing what is the result of your biopsy.
Based on what you are saying you might fall into a certain age range. Are you in your late 50's? Just inquiring.
Thinking of you.
Jody |
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| kathyintoronto
Super Member (250+ posts)
418 Posts
Gratitude: 114
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Posted - 06/20/2012 : 09:22:22
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Thanks for all the good info Jody-no worries about being too technical! (BTW I am 55) I am pretty good at getting my ducks in a row and bringing all the questions I have to the table.
I had a lung biopsy on Monday - and now I wait. I have been managing ok with the anal cancer but am feeling very worried that this will be lung cancer. I have been a smoker (on and off) for almost 40 yrs and part of me feels like I deserve it.
I saw the surgeon that did the original biopsy yesterday. It seems that part of the problem is that I only saw the Medical Oncologist at that hospital once before my care was transferred to one of Toronto's two major cancer centres. (My brother in law who works in the pharma industry, primarilly relating to oncology tells me that this is a "world class" facility). Seems that this may have been lost between the cracks.
The other issue is that apparently a 55 year old smoker's lungs frequently show all sorts of odd stuff on a CT scan. Since the nodule was so small (5mm) they would have apparently not done much with it at that time, hard to biopsy when it is that little. He did however say that he thought they should have done a 2nd CT after 4 months to monitor progress.
He did say that "they" don't like to scare people if there is no clear info. Still and all, I figure I had the right to know.
He also said that malignant tumours this small (if that's what it is, aparently only 40% of them are) are very amenable to treatment. Apparently they would likely use a surgical approach - having enduring the horrors of an agressive course of radiation I am actually happy about this.
Here's hoping.....
Kathy
"The only thing necessary for evil to flourish is for good men to do nothing"
Martin Luther King Jr. |
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| lynn2150
Super Incredible Member (10000+ posts)
21329 Posts
Gratitude: 2146
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Posted - 06/21/2012 : 12:02:12
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Hi Kathy,
High Five,
we're survivors !
I am 56, long time smoker also,
Had my total abdominal hysterectomy on Mar 8th for a 'pre cancer" and polyps etc.
I haven't been back to the ob/gyn, typical me .
I must have a colonoscopy June 28 not quite ready for it emotionally.
My Mother has Basal Cell Carcinomo on eyebrow, and pre cancer on hand. and will be going to the Odette Cancer Center at Sunny Brook Hospital, July 19th.
Cancer seems to be every where,
Am crossing fingers and toes for you.
I also feel I deserve cancer for smoking.
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| stigmastomper (inactive)
Super Incredible Member (10000+ posts)
24317 Posts
Gratitude: 1940
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Posted - 06/21/2012 : 13:45:36
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i will pray for you also .
you are brave.....
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| kathyintoronto
Super Member (250+ posts)
418 Posts
Gratitude: 114
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Posted - 06/27/2012 : 06:07:58
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Thanks so much for your support Stigs and Lynn - I need all the prayers I can get. I was feeling quite terrible just after the news of the node on my lung but after I got over the initial shock I was feeling somewhat better.
I spent the weekend in Montreal, where I was born and brought up. It was a wonderful time, full of conversations with old friends, good food (nothing like Montrreal bagels, smoked meat and orange juleps, etc. etc.). I forgot about my fears and left with a song in my heart.
Now that I'm back in Toronto and the "diagnosis" is 8 days away my mood seems to be on a rollercoaster downwards.
I am so scared.
"The only thing necessary for evil to flourish is for good men to do nothing"
Martin Luther King Jr. |
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| lynn2150
Super Incredible Member (10000+ posts)
21329 Posts
Gratitude: 2146
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Posted - 06/28/2012 : 02:43:40
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Please stay in touch Kathy.
I hear that Sunny Brook Hospital offers state of the art treatment aat the Odette Center.
That is where my Mother will go for her skin cancer treatment.
Toronto has many good Hospitals.
Have you signed up with Well Springs? Cancer support Center.
or maybe a support center is too much right now, as strange as that may sound.
A friend of mine was cured of throat cancer at Sunny Brook.
with radiation therapy.
Damn if he still smokes, It's a hard habit to break.
I think most people appreciate you sharing about your therapy.
The word Cancer scares the **** out of most of us.
Be well, Kathy, be well. 
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| kathyintoronto
Super Member (250+ posts)
418 Posts
Gratitude: 114
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Posted - 06/28/2012 : 05:23:24
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Oh Lynn, I sit here crying after reading your post - not because you said anything hurtful (I voted your comment very caring) but because I so appreciate your compassion, and that of so many others here. Your posts, even when you are having a hard time yourself, are always caring and supportive. Thank you so very much.
Part of my current anxiety comes from the fact that I am so hurt that my younger sister has chosen to perpetuate her distance from me even now. This is neither the time nor the place to go into that story but suffice it to say that she has acted in incredibly hurtful ways since my first psychotic episode in 2002. Our relationship was always stormy but since that time she has not only withdrawn from me but has acted in ways that have interfered with my relationship with my children and husband. We saw her family briefly at Christmas and I thought that my diagnosis would have made her more sympathetic but such was not to be the case.
Lynn yes the Odette centre is a wonderful place in many many ways. Wellspring has been recommended to me by many but since I now live in Rexdale getting to Sunnybrook for anything but treatment is difficult. I am seeing one of their psychologists and she has been most helpful. Depending on what happens next week I'll make more of an effort. My only real complaint is that Odette sees so many patients that they do not really assign a "primary Oncologist" (as Jody mentioned) but work with a team approach. This is good in some ways but makes communication challenging.
Thanks so much everyone for encouraging me to continue to post about this and for the support I have been given.
Kathy
"The only thing necessary for evil to flourish is for good men to do nothing"
Martin Luther King Jr. |
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| lynn2150
Super Incredible Member (10000+ posts)
21329 Posts
Gratitude: 2146
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Posted - 06/28/2012 : 13:38:20
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(((((((Kathy)))))))
Family can be SO infuriating, We will be your support.
Jody has seen a lot in her profession as a Nurse.
I know you will do the right things,
My Cousin had breast cancer, and was treated somewhere in downtown Toronto. I am out of the loop, I don't know is Princess Margaret is still in the same location.
You are brave Kathy, you reached out to me, and I so much appreciate that.
It is sad, families often separate, it is so foolish.
Kathy? in your last postings, your husband was abusive, Is he still with you?
Has he calmed down?
I truly hope so.
Lynn
xoxox
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| kathyintoronto
Super Member (250+ posts)
418 Posts
Gratitude: 114
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Posted - 06/29/2012 : 09:04:34
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Oh Lynn, I'm not so very brave - we'll lean on each other shall we? After all I think that that is what MT is for.
I wondered if someone would remember about the stuff with Leslie (my husband) and it figures it would be you dear lady. You've a mind like a steel trap - am constantly astounded by the things on these boards that you can remember.
Honestly talking about that on the boards in early 2011 led to some replies that I found very judgmental and hurtful - I decided to flee rather than fight and that is why I have been gone so long.
Somehow I feel I could talk to you about it and it would be really wonderful for me to do that. I will get my diagnosis next Thursday and after that I will set up a private blog which I believe I can designate certain people to see. Please think about agreeing to be that person. I would be grateful.
Kathy (6 days to go)
PS - You did go have the colonoscopy I hope?
"The only thing necessary for evil to flourish is for good men to do nothing"
Martin Luther King Jr. |
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| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
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Posted - 06/29/2012 : 12:50:39
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All my best Kathy.
I'm not to verbal on the boards..but
am reading..and hoping for
the best outcome for you.
The true person lies beneath the skin. |
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| lynn2150
Super Incredible Member (10000+ posts)
21329 Posts
Gratitude: 2146
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Posted - 07/02/2012 : 17:40:10
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How are you Kathy?
I have not writtten to you, simply due to the Code of Ethics.
Not because I do not CARE !
Just wanted you to KNOW THAT.
I hope you are all right ............................
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| kathyintoronto
Super Member (250+ posts)
418 Posts
Gratitude: 114
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Posted - 07/03/2012 : 08:22:22
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Thanks so much for the encouragement and concern Parrotputz
Kathy (2 days to go....)
"The only thing necessary for evil to flourish is for good men to do nothing"
Martin Luther King Jr. |
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| kathyintoronto
Super Member (250+ posts)
418 Posts
Gratitude: 114
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Posted - 07/03/2012 : 08:27:29
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Oh Lynn - I did not want anyone to act outside the bounds of our code of ethics. When I said "talk to you" about the husband thing I meant on the blog as opposed to in real life.
It was my understanding that we are permitted to start private logs and then designate them as viewable by only selected individuals.
Is that how it works?
I'm not doing too badly but expect that by Thursday morning (appointment in the afternoon to get biopsy results) I'll be a wreck. It's so nice to know that I have the support of people here.
Kathy (2 days to go)
"The only thing necessary for evil to flourish is for good men to do nothing"
Martin Luther King Jr. |
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Topic |
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My Journey with Cancer
