Puckered Skin

MelissaDallas

I’ve done the full Color Genomics cancer genes Panel. It was less than $300 at the time. Negative on all

LivinLife

Invitae is who did my genetic cancer panel testing. My genetics counselor was at Cleveland Clinic though they use Invitae (3rd part) for genetic testing. Likely they are not in your neck of the woods? What I was told was if insurance did not pay Invitae only charges $250 vs. the over $5,000 grand for the panel they charge insurance. You may be able to work something out with whoever is in your area. Maybe you could even see if your blood work can be sent to another company that operates that way. My blood was actually drawn at a Cleveland Clinic lab. I had something similar happen locally - I'm in central PA when I underwent genetic testing for MEN I and MEN II since me and my sister both had hyperparathyroidism, related surgeries and I've had adenomas in various parts of my body. That was drawn locally and then sent off to some out of state 3rd party lab.... It was not Invitae though I can't remember the name of the company.

So glad your sister's lesion came back benign! Sounds like there are still things to sort out regarding her health issues though... I hope your brother's wife does all right with all she is dealing with. You are all still dealing with so much... As far as who does the clinical breast exam - given issues I know I would think first about someone who has a lot of experience and then hopefully expertise. That makes me think about an OBGYN vs. PCP or someone from a breast care center over even a general OBGYN. I think who you are comfortable with and trust is really important too. PCP's do breast exams. I also think many prefer not to so don't do it any more than they kind of have to.... I think it depends on the PCP and not to offend anyone... I think the women docs are often more comfortable doing these exams than the guy docs. I had some pretty rude guy docs in my younger days when it came to women's issues, including PAP or pelvic exams. Unfortunately some of them talked out loud. I think a lot has changed since then but.....

sasamat

I recently did Invitae's breast cancer panel. They ship you a kit, you produce a spit sample, and mail it back. I got results in about ten days.

I did it through a Canadian study http://thescreenproject.ca/ but anyone can initiate this as an individual. Even in the study, you have to pay for the test (about $250 US). In the study, you first get the BRCA 1 and 2 results, then you can request results for an additional 43 genes at no cost. That's the part where being in the study might help cost-wise? The study also handled the genetic counseling aspect.

I realize $250 is real money, but overall it seems like a good investment to make if you've got a concerning family history and your doctor / insurance isn't getting this important genetic info for you in a timely manner.

ShetlandPony

Cheryl, you said, “ I requested my records and received them today. Looking through, I found I was tested for the BRCA1 and BRCA2 only, and was negative. My insurance wouldn't cover the comprehensive breast and ovarian cancer panel that was recommended by the Seattle Cancer Care Alliance.“

Good sleuthing. Now that you have more family history info, maybe the genetics people at Seattle can get insurance approval for the Invitae or Ambry full cancer panel. Not just breast cancer, given the family history. Otherwise maybe the company will let you pay a low self-pay price. I'll tell you why I believe more is more. Back in 2011, I just *knew* that the premenopausal bc had a genetic reason. They only tested me for BRCA mutations, and none were found. I did not know any better and had no further testing done. Then in 2015 I had a full cancer (not just breast cancer) panel done, and we found the smoking gun: an MSH6 mutation that explained the family history of skin and colon cancer as well as the breast cancer . Darn it, if I had known in 2011 or 2012, that would have tipped me into the oophorectomy I was considering, since this mutation also raises my risk of ovarian cancer. And even though docs at the time said that would be overtreatment, it might have prevented me from getting into my current situation. (My onc agrees with this.) AND, since then, a first degree relative also got an ILC diagnosis. Two other relatives tested positive for the mutation and are taking screening and prevention actions that we hope will prevent them from being like me. So that is my story and why I am glad that genetic testing is being offered to more people, and testing is broader.

I agree with LL, let a breast specialist to do your exam.

LivinLife

Great info sasamat! So glad you have experience with Invitae and could share that. That is really cool about the Canadian study aspect too....

CherylCC

Thank you so much, MelissaDallas, LivinLife, sasamat, and ShetlandPony! This is all so very helpful!

Based on everything I have learned here, I am going to go for thorough genetic testing, trying through SCCA first, and if not, then on my own. It seems given our family's cancer history that at the very least it would be helpful to rule out. More data is always good.

I am going to request another provider at SCCA and go with them for the clinical exams and follow-up. While my primary provider is wonderfully supportive, I think going with the people who do this every day is probably the best plan.

I gave up long ago on my own breast self exams. Everything reads as lumpy bumpy, and I just felt like it was useless. During the waiting period for my diagnostics I read many posts here, and some of those changed my mind about my own exams. I am going to give them a try again, and try to get a feel for the terrain, so to speak, as one post suggested. If I learn what feels normal, bumps and all, then hopefully I might spot something new that isn't normal. And, hopefully, that moment never comes.

Thank you so much for all of your support and help during a stressful time. Dealing with this right after the death of my dear father from cancer made it all the harder, and you have all made it not only bearable, but I have felt like I was doing it with experienced, compassionate friends at my side. Thank you, thank you, thank you, from the bottom of my heart.

--Cheryl

MinusTwo

SInce you appear to have genetic risks, I would not go to a PCP. If you have an experienced GYN that might be acceptable. Or yes, I'd make the trip to Seattle.

ShetlandPony

Regarding self-exams, I think the key for me was not to memorize every fibrocystic lump, but to notice the spot that felt really different from the rest, as in What the heck is THAT?

My condolences on the loss of your dear father, my friend. Be well.

CherylCC

Thank you, MinusTwo. My PCP delivers babies, so she might have better than average experience, but that's a guess that this type of exam come up more frequently during that type of care than the rest of the spectrum. It's also possible that is in the past now, so much has changed this year, and she may no longer do that. Anyway, I am feeling that the trip to Seattle would be valuable, especially if they can help get the genetic testing ball rolling again, with the new family data. I just found another cancer death while doing family history entries and updating my dad's entry. It's back another generation, but she is mother to all the aunts and uncles that had it, so it seems connected. Stomach cancer, this time.

CherylCC

Thank you so very much, ShetlandPony. I so appreciate your kind words. I'm sure you know, but some days are harder than others. This was one of those.

--Cheryl

LivinLife

CherylCC it sounds like you are already doing this tho just in case.... Due to losing three siblings and both parents to various cancers and an extensive history of cancer in the extended family I started a cancer family history on a thumb drive. I now print that out and give that to any current provider and will do the same for future providers. It just amazes me how it still gets written in progress notes inaccurately though the main point is still there. They seem to really appreciate these kinds of things.... I'm also glad this site has been so helpful and supportive to and for you!

CherylCC

Thank you, LivinLife, that is a fabulous idea! I went prepared with printouts to my Seattle appointment, but there was no one to receive them. I am going to make sure I have a provider appointment next time. And I love the idea of giving them to every provider. I have seen lots of mistakes in the notes as I am going through later, so I know my very careful, detailed oral history is not always correctly understood and/or recorded. I am so very sorry about all your losses in your family. I cannot even begin to imagine the pain of those multiple deaths to cancer. Thank you again for all your help and emotional support!

--Cheryl