Breast Cancer, Endometrial Cancer and now colon cancer

hannahstripe

OK. Trying to get a grip here. 8 years ago, I had breast cancer - first ever mammogram -early stage - double mastectomy - survivor- very lucky! No genes, 5 years tamoxifen , feel grateful - move on. Fast forward 7 1/2 years - endometrial cancer - "probably from tamoxifen" - gee thanks . Total hysterectomy w/ bilateral salpingo-oophorectomy - more gene testing none found - fast forward to now - first colonoscopy - found 3 polyps - took them out - pre-cancerous. Seriously?!?!

I am freaking out - I don't have the genes then why do I keep getting cancer? And do I even have colon cancer or at least I would have if they didn't take them out ???

I spoke with my oncologist. She is going to check my pathology so she knows the details. Then I have asked for scans ( never had any before). I just feel like I need them at this point to see if there is anything else.....

I am so scared and overwhelmed by all of this......is this really 3 cancers in 8 years, and I just turned 50......

Beesie

Oh, Hannah, I'm sorry you keep having such miserable luck.

Colonoscopies are different than most other cancer screening procedures. They aren't used only to find and diagnose cancer (as mammograms or ultrasounds do) but colonoscopies are the most effective means to avoid the future development of colon cancer.

So the good news, such that it is, is that pre-cancerous colon polyps are not cancer. If your polyps have been confirmed to be pre-cancerous and do not contain cancer cells, then you have not been diagnosed with a 3rd type of cancer.

Because they can turn cancerous, pre-cancerous polyps are removed, eliminating the risk that the polyp might develop into cancer. However not all pre-cancerous polyps become cancer, and for those that do, it can take as long as 10 years.

The bad news is that because you've been found to have these pre-cancerous polyps, it means that more of these polyps may develop over the years - so you likely will be put on a more frequent schedule of colonoscopies than the average person. My brother (who has also had two different types of cancer), has a colonoscopy every couple of years. With this, hopefully he can avoid adding colon cancer as a third cancer.

Since you've had genetic testing done twice, I trust you've been tested for a large panel of genes?

hannahstripe

Hi Beesie! Thank you so much for your response. I have read posts from you helping others so often over the last 8 years. I feel better just reading your response! Also, your quote spoke to me - Fear is not my friend!

Thank you - it feels better to know this is not a 3rd cancer - at least not yet and hopefully because I am ahead of it and it never will be. What is your opinion of me asking for further scans? I am now on the 3 year plan for colonoscopy. Ugh! I am glad they are on it and watching - but the prep was miserable and the idea of doing it every 3 years - gross! But better than cancer so I will power through.

They tested me for BRCA1 and BRCA2 the first time and I think specifically for Lynch Syndrome the 2nd time - not sure if they tested me for any other genes...do you think I should be requesting this also?

SimoneRC

Hi hannahstripe!

First of all, sorry! You’ve been through the ringer. That stinks.

Second, Beesie, as always, is a wise woman with great amounts of caring and amazing knowledge she so kindly shares. Thank you, Beesie!

I am a mutant. My sister had colorectal cancer 10 years ago. First in family. Then I got breast cancer 8 years later at age 51. Then, we both were diagnosed with a Pathogenic Mutation of the ATM gene. We both decided to get prophylactic ovary removal. For various reasons, during the surgery, they wound up taking my sister’s uterus. She had a polyp in it which was cancerous.

I began colonoscopy early due to my sister’s diagnosis. First one clear. 3 years later, one large pre cancerous polyp. Then, 3 years later five polyps. 3 years later 15 polyps. 1 year later 35 polyps and a diagnosis of Serrated Polyposis Syndrome. Now on annual colonoscopy in order to avoid colorectal cancer (40% risk without colonoscopy treatment) and hopefully will keep my colon!

Yes, please get full genetic testing. And, while prepping for colonoscopy is not the best, I would take it any day over dealing with colorectal cancer and/or colectomy. Knowledge is power for you here! You have a pretty easy procedure, colonoscopy, which can literally help you eliminate much of your risk of colorectal cancer.

Good luck and all the best!

nonomimi5

Hello - I need to get a Colonoscopy soon. They took out 3 polyps out 5 years ago, but I don’t remember if the Dr said they were pre-cancerous or not. I think I would remember if they were, so I am hoping they were not.

What are you thoughts on the Colon cancer screening companies that analyze your stool like Cologuard?

Beesie

nonomimi5, I'm on the same schedule as you. A benign (not pre-cancer) polyp 5 years ago, so due for another colonoscopy this year. I believe that once we've had polyps, a colonoscopy is recommended rather than the screening kits. But they are probably fine for in-between years.

Simone, thank you! Yours is quite the story. Good luck keeping colon cancer away!

Hannah, Lynch Syndrome is the one I was thinking of. There are several genes linked to it. With your personal and family history, there are quite a few genes that they should check. Definitely ask about full panel testing. There is a breast cancer panel but probably also panels for other cancers so maybe you can get a supplemented breast cancer panel, incorporating other endometrial and colon cancer genes

MinusTwo

mimi - I had polyps at my first colonoscopy so was scheduled for a repeat in 3 years. And you are correct - the prep is HORRIBLE. Much worse than the procedure. So went back in 3 years - more polyps. Another 3 years - hey, no more and I got a 5 year call back. Just completed that procedure last fall - still no more polyps so another 5 years.

nonomimi5

MinusTwo - That’s great news! Hurray. Oneless thing to worry about!

AliceBastable

For genetic testing, find out what your insurance will cover. Since mine was requested by the breast surgeon, they refused to pay for anything not related to breast cancer. That wasn't really helpful since I've had other cancers, as have some relatives.

hannahstripe

Thank you to all of you for your responses and advice. My oncologist called me back and left a message. She said that the polyps they found were tubular adenoma which she said are the most common. She now thinks I do not need any further follow up except the 3 year follow up. Although I appreciate her help and am glad to hear it is the most common kind. I am not sure I am comfortable with that. I will need to call back and speak with her. I am still wondering if I need scans or more genetic testing. My husband thinks I should be happy with this and let it go. I am just not sure how I feel. Although I know going through the scans or genetic testing would be nerve wracking....I'm jus not sure the panic attacks I have been having over this will go away....open to any and all advice. Thank you.

Beesie

The fact that these are tubular adenomas is good. They are not cancer and only about 10% turn into cancer, if they are not removed. And yours were removed.

Based on these results (separate from your breast cancer and endometrial cancer), why are you thinking that your need any scans?

As for genetic testing, perhaps a discussion with a genetic counsellor would be a good idea, to see if there are other genes that you should be tested for, considering your cancer history. Was your previous testing through your MO or did you see a genetic counsellor?

AliceBastable

I have to get scans two or three times a year. I asked my doctor if the abdomen/pelvic part of the scan picks up any colon activity, and was told "not really." It's why there's a separate test. My genetic testing was just spitting a lot of saliva into a tube. Nothing stressful about it.