Cancer Support Thread

[Anonymous]

Trudy - what a wonderful thread. Thank you for starting it.

I don't think I know anyone who isn't touched by cancer in some way, but when i think about those I know who are really in the thick of the struggles I now include "AMA" - about whom I think so often. And I will include everyone I'm meeting here in my thoughts and prayers.

Wishing you all the very best.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hi Coco! How did you learn that you had cancer--were you experiencing symptoms or was it found during a regular checkup? Fingers crossed that it's just endometriosis.

~Trudy

Hi Trudy! I had symptoms. I was having some abdominal pains after eating. I'd also noticed a bit of blood in my stool (which I stupidly dismissed as post-pregnancy hemorrhoids). I was losing weight too, although I attributed that to breastfeeding. After 2 months or so of the stomach pains, I finally made an appt with a GI specialist, who recommended a colonoscopy. That was how they found it. There is no routine screening for colon cancer before age 50, so I'm very lucky that my doctor was proactive. Given the aggressiveness of my tumor, they've given me 50/50 odds that it will come back. What are the recurrence rates like for stage III breast cancer?

Those things like weight loss due to breast feeding and blood in the stool from hemorrhoids are spot on. You weren't being stupid.
You are lucky that your doctor was proactive most would have just send you home with some Colace.
Hope you continue to do well.

[Anonymous]

Just bumping this back up a bit to keep the conversation going...

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Hi Coco! How did you learn that you had cancer--were you experiencing symptoms or was it found during a regular checkup? Fingers crossed that it's just endometriosis.

~Trudy

Hi Trudy! I had symptoms. I was having some abdominal pains after eating. I'd also noticed a bit of blood in my stool (which I stupidly dismissed as post-pregnancy hemorrhoids). I was losing weight too, although I attributed that to breastfeeding. After 2 months or so of the stomach pains, I finally made an appt with a GI specialist, who recommended a colonoscopy. That was how they found it. There is no routine screening for colon cancer before age 50, so I'm very lucky that my doctor was proactive. Given the aggressiveness of my tumor, they've given me 50/50 odds that it will come back. What are the recurrence rates like for stage III breast cancer?

Those things like weight loss due to breast feeding and blood in the stool from hemorrhoids are spot on. You weren't being stupid.
You are lucky that your doctor was proactive most would have just send you home with some Colace.
Hope you continue to do well.

Before my cancer was diagnosed, I was losing weight like crazy: I am male, 6'2", and had dropped about 35 lbs. I was not trying. My colleagues knew something was wrong because they never saw me pass up food before. I mentioned it to my Doctor, and he said that it is great -- I needed to lose the weight (true).

Then, they found the tumor. After it was removed, no more weight loss (and it all came back).

In fact, I see my oncologist every 6 months for followup. I am supposed to call and come in earlier if I suddenly start losing weight.

[Anonymous]

Is anyone else here working with a naturopath, or pursuing any complementary/alternative strategies? I've been doing a lot of work on trying to strengthen my immune system. I'm also taking anti-inflammatories to try and keep my systemic inflammation as low as possible.

[Anonymous]

Anonymous wrote:Is anyone else here working with a naturopath, or pursuing any complementary/alternative strategies? I've been doing a lot of work on trying to strengthen my immune system. I'm also taking anti-inflammatories to try and keep my systemic inflammation as low as possible.

I would be very very careful with alternative strategies. If you are doing it in addition to your regular treatments, then make sure your oncologist is on board.

The real thing is most alternative strategies do not work. If they worked, they would be mainstream. The possible exception is cannabis, as (federal) research has been prohibited.

What can work well is alternative meds to counteract treatment side-effects. For example, acupuncture is very effective with neuropathic pain.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is anyone else here working with a naturopath, or pursuing any complementary/alternative strategies? I've been doing a lot of work on trying to strengthen my immune system. I'm also taking anti-inflammatories to try and keep my systemic inflammation as low as possible.

I would be very very careful with alternative strategies. If you are doing it in addition to your regular treatments, then make sure your oncologist is on board.

The real thing is most alternative strategies do not work. If they worked, they would be mainstream. The possible exception is cannabis, as (federal) research has been prohibited.

What can work well is alternative meds to counteract treatment side-effects. For example, acupuncture is very effective with neuropathic pain.

I am the PP you quoted and I agree with the exception the bolded statements. There is actually quite a bit of research suggesting that alternative approaches may be helpful. Take a look, for example, at some of the research on curcumin. There are many other examples, as well.

Of course, we're not talking about silver bullets. These types of strategies seem to be of greatest benefit in addressing/ameliorating the conditions that allow cancer to flourish in your body. For example, reducing clotting factors like fibrinogen, addressing factors that promote angiogenesis, reducing inflammation, etc. etc. I thought the following book provided a great overview of this integrative approach and how it can be helpful:

http://www.amazon.com/Life-Over-Cancer-Integrative-Treatment/dp/0553801147

[Anonymous]

Anonymous wrote:

Anonymous wrote:AMA OP here. I'm back in the hospital for a bad fall. After a CT, I'm now being told they see something so I'm waiting to see my oncologist. If it's a met, it would be a new one. I'm really hoping it isn't that.

It's one of those weird truths that you never really stop being afraid of cancer, even after you get it.

I'm sorry, AMA...how's it going? Please keep us posted. (((hugs)))

~Trudy

Thanks, Trudy, and everyone, for your good thoughts. News wasn't good. I'm in that place of absorbing the new situation, trying to be patient with myself, and waiting. If nothing else, cancer has taught me how to wait patiently.

It will be ok. It has to be. The alternative is unacceptable.

Sending good thoughts to everyone on this thread and hoping everyone is doing well and having a peaceful evening.

[Anonymous]

Anonymous wrote:You can call me Beth. Like you, I was diagnosed with breast cancer in my 40's (43). I was diagnosed with what's called an "occult primary" breast cancer - basically no tumor was ever found in the breast, but I did have 2 positive lymph nodes. Like you, I'm also triple positive. I tested negative for BRCA1/2, but did test positive for a gene "variant of unknown significance". I do have some breast cancer on one side of my family (aunt and cousin).

I had neo-adjuvant TCHP chemotherapy, then due to my family history, I chose to have bilateral mastectomy (they did the reconstruction with implants at the same time) with axillary dissection (21 nodes removed - 2 found to still have some cancer cells upon pathology review of the tissue post surgery - no cancer cells found in my breasts at all). I am completing my year of Herceptin - will finish in October. And, I am having radiation of the axilla and breast on the effected side. I'll be starting Tamoxifen soon.

The most difficult/upsetting thing for me is how little the doctors can or will tell you about your risk of recurrence - especially for me I suppose - diagnosed young, triple positive and with an occult breast cancer. There's not much out there on that combination. So it's really, really scary for me. I tried to talk with my oncologist about it and was told that I should just go home, forget about it and live my life. I was told, "you're in remission, ok?" in a very harsh way. Alrighty then....

Anyway - I'm a mom, a wife and I work full time...so juggling life and this cancer merry-go-round has been very challenging. I'm looking forward to getting to mid-October. At that point I'll be done with all the major treatments and will be in follow-up mode + tamoxifen.

Hi Beth! Is there interest in pursuing the gene variant of unknown significance? I had a similar finding CHEK2 gene), but no further testing was warranted. Occult cancer is always challenging. Based on the cancer in your lymph nodes, was the pathological staging able to determine the grade of the cancer?

We're in the same place...I finish my year of Herceptin at the end of September, and I finish radiation on Monday. I start Femara (hormone therapy) in two weeks.

I'm VERY displeased for your sake re: your oncologist's reaction to your questions. Have you spoken to another oncologist? What sort of response is it to go home and live your life?! That's patronizing and unhelpful. I know there's no perfect answer ("You have a 21% chance of recurring!"), but there are factors in play that can help determine a rough estimate of what to expect.

Are you in the D.C. area? I can recommend an excellent oncologist named Dr. Frederick Barr. I am with Kaiser, so my main oncologist is a Kaiser physician, but I saw Dr. Barr for a consult that I paid out of pocket (very affordable). Dr. Barr helped save the lives of a few of my family members over the past 25 years and he has the best demeanor: http://www.chevychasecancercare.com/meet-the-physicians/ He was quite forthcoming about the risk of recurrence for me (high) and yet warm and encouraging at the same time.

How are you finding radiation? I have mostly dry peeling and a lot of itching, with only one bad spot; overall, I've found it more manageable than I anticipated at the get-go.

~Trudy

[Anonymous]

Dear AMA...sorry the news wasn't good. If you're still keeping your blog, please e-mail me the link if you get a chance. I'm at [e-mail]. Thinking of you & sending pudding vibes (and other positive thoughts).

~Trudy

[Anonymous]

Anonymous wrote:Hi Trudy,

You can call me Beth. Like you, I was diagnosed with breast cancer in my 40's (43). I was diagnosed with what's called an "occult primary" breast cancer - basically no tumor was ever found in the breast, but I did have 2 positive lymph nodes. Like you, I'm also triple positive. I tested negative for BRCA1/2, but did test positive for a gene "variant of unknown significance". I do have some breast cancer on one side of my family (aunt and cousin).

I had neo-adjuvant TCHP chemotherapy, then due to my family history, I chose to have bilateral mastectomy (they did the reconstruction with implants at the same time) with axillary dissection (21 nodes removed - 2 found to still have some cancer cells upon pathology review of the tissue post surgery - no cancer cells found in my breasts at all). I am completing my year of Herceptin - will finish in October. And, I am having radiation of the axilla and breast on the effected side. I'll be starting Tamoxifen soon.

The most difficult/upsetting thing for me is how little the doctors can or will tell you about your risk of recurrence - especially for me I suppose - diagnosed young, triple positive and with an occult breast cancer. There's not much out there on that combination. So it's really, really scary for me. I tried to talk with my oncologist about it and was told that I should just go home, forget about it and live my life. I was told, "you're in remission, ok?" in a very harsh way. Alrighty then....

Anyway - I'm a mom, a wife and I work full time...so juggling life and this cancer merry-go-round has been very challenging. I'm looking forward to getting to mid-October. At that point I'll be done with all the major treatments and will be in follow-up mode + tamoxifen.

The think to understand in in these studies, there are people that beat the odds, and people that do worse than the odds.

In my case, 3 years ago, I was given 3 yr disease free survival of 15-20%. I had/have a very aggressive (sarcomitoid differentiated) metastatic kidney cancer. Three years later, I remain NED. Did I beat the odds, or did I hit the odds for just me? I don't know... but everyone is different. In my case, there was one metastasis. The treatment we tried was surgery (kidney and part of lung removed). For what ever reason, that may have worked for me. The message is there are always outliers.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hi Trudy,

You can call me Beth. Like you, I was diagnosed with breast cancer in my 40's (43). I was diagnosed with what's called an "occult primary" breast cancer - basically no tumor was ever found in the breast, but I did have 2 positive lymph nodes. Like you, I'm also triple positive. I tested negative for BRCA1/2, but did test positive for a gene "variant of unknown significance". I do have some breast cancer on one side of my family (aunt and cousin).

I had neo-adjuvant TCHP chemotherapy, then due to my family history, I chose to have bilateral mastectomy (they did the reconstruction with implants at the same time) with axillary dissection (21 nodes removed - 2 found to still have some cancer cells upon pathology review of the tissue post surgery - no cancer cells found in my breasts at all). I am completing my year of Herceptin - will finish in October. And, I am having radiation of the axilla and breast on the effected side. I'll be starting Tamoxifen soon.

The most difficult/upsetting thing for me is how little the doctors can or will tell you about your risk of recurrence - especially for me I suppose - diagnosed young, triple positive and with an occult breast cancer. There's not much out there on that combination. So it's really, really scary for me. I tried to talk with my oncologist about it and was told that I should just go home, forget about it and live my life. I was told, "you're in remission, ok?" in a very harsh way. Alrighty then....

Anyway - I'm a mom, a wife and I work full time...so juggling life and this cancer merry-go-round has been very challenging. I'm looking forward to getting to mid-October. At that point I'll be done with all the major treatments and will be in follow-up mode + tamoxifen.

The think to understand in in these studies, there are people that beat the odds, and people that do worse than the odds.

In my case, 3 years ago, I was given 3 yr disease free survival of 15-20%. I had/have a very aggressive (sarcomitoid differentiated) metastatic kidney cancer. Three years later, I remain NED. Did I beat the odds, or did I hit the odds for just me? I don't know... but everyone is different. In my case, there was one metastasis. The treatment we tried was surgery (kidney and part of lung removed). For what ever reason, that may have worked for me. The message is there are always outliers.

I have a theory that the difference is mostly about immune function. Came across an interesting article the other day about patients who have metastasis and those who don't. The difference was how actively their immune systems were fighting against their tumors. I suspect this is why exercise is so important in increasing survival odds--because it improves immune function.

http://www.medscape.com/viewarticle/859945?src=wnl_edit_tpal&uac=165533BX#vp_1

[Anonymous]

I've read similar articles (couldn't read the Medscape one, which is password locked). Interesting theory & I do see that immunotherapy is the next big thing in cancer research.

~Trudy

[Anonymous]

Hi everyone. Coco's story sounds quite similar to mine. I was diagnosed with stage IV colon cancer at age 35 last year, two years postpartum. Now NED after chemo and surgery, thank God! The odds of recurrence are frighteningly high, but I try not to dwell on that and just enjoy every moment with my daughter.
And it surprises me how many other young women I have met (mostly online, though several are local) with stories like mine, diagnosed with colon cancer within a couple of years after a pregnancy and not fitting any of the typical risk factors in terms of age, family history, diet, etc. There's no evidence that colon cancer is hormone-driven, but it does make me wonder if there is a subset of cases where that is a factor...

[Anonymous]

Anonymous wrote:Hi everyone. Coco's story sounds quite similar to mine. I was diagnosed with stage IV colon cancer at age 35 last year, two years postpartum. Now NED after chemo and surgery, thank God! The odds of recurrence are frighteningly high, but I try not to dwell on that and just enjoy every moment with my daughter.
And it surprises me how many other young women I have met (mostly online, though several are local) with stories like mine, diagnosed with colon cancer within a couple of years after a pregnancy and not fitting any of the typical risk factors in terms of age, family history, diet, etc. There's no evidence that colon cancer is hormone-driven, but it does make me wonder if there is a subset of cases where that is a factor...

Hi, this is Coco. So interesting what you say about pregnancy. I've definitely noticed the same thing. Almost every younger woman I've come across with colon cancer (all online) has Lynch Syndrome or is within a few years of giving birth. Maybe it has something to do with the immune system being suppressed during pregnancy. Did you do infertility treatment? I did and often wonder if that could have played a part as well.

Just curious, have you found a good local support group for colorectal cancer? Seems like there are a million for breast cancer but not so much for folks like us.