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What do I look for?

fullyloved
Posts: 38
Joined: Oct 2012

I am currently in remission for non-hodgkin's lymphoma. Of course, one thought that lurks in the back of the mind is that once you've had one cancer, secondary cancers are more likely. And my doctor point blank told me that since the lymphoma was in a large tumor in my lungs, and since I am young, I have a greater risk for breast cancer. Thankfully, I refused radiation to the tumor, for radiation would have increased my risk for breast cancer even more.

Of course, I've done some research and such things say that it's better if breast cancer is caught sooner rather than later (what cancer isn't?). So I'm wondering, what did you first notice that showed there was something wrong? What symptoms did you have, if any? I am much younger than the recommended age for beginning mammograms, so in general, for now, I am just wanting to be alert. What did you notice, and what would you recommend? Any information would be helpful.

McMarty's picture
McMarty
Posts: 187
Joined: Nov 2012

I think the fastest way to catch it early is a mammogram.  Your situation should put you in a high risk category and lower your minimum age to start mammograms to NOW.  I think if my Dr recommended not having mammograms or PET scans or some kind of checking other than self breast exams.  I'd find a new Dr.  To me, by the time you find it yourself, it is quite a problem.

But that's just me and I'm not a Dr althout I have seen a few make mistakes :)

I am praying for a healty happy CANCER FREE future for you!  One is more than ENOUGH!!

Marty

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Congrats on your remission for NHL.  Have you spoken with your oncologist regarding your risk for secondary cancers?.  You can look up some info on this ACS website http://www.cancer.org/acs/groups/cid/documents/webcontent/002043-pdf.pdf.  Its a document outlining treatments and risks.  As you have pointed out, your risk for breast cancer is much lower because you opted out of radiation therapy.  Some chemo agents do increase the risk for BC, they are spelled out in the above ACS document. 

I am a 23 yr survivor of recurring Hodgkin's Lymphoma first treated with Rads and then ABVD.  I was dx'd with Breast Cancer 17 years after my radiation therapy.  Because I had radiation, my mammos started right after treatments ended.  In 2007, it was recommended to alternate mammos with breast MRI's.  My mammos pointed out the same spot for 3 years.  The mri did not confirm anything because it was calcifications but the doc that read my mri reread my mammos and strongly urged a biopsy because he was keenly aware of my history.  That led to IDC.

I'm thinking your docs would want to minimize your radiation exposure, CT's, Pet scans, etc.  I guess what I'm saying is to have someone who understands your individual risks and follow a surveillance plan.  I see an Adult Long Term Follow-up specialist for this purpose.  Of course any test involving radiation is a last resort for me. 

A cautionary note: when testing is done after our treatment ends, it can lead to undo anxiety.  Because the rads and chemo altered my "interior" often times a nodule, cysts, protrusion would be noted.  This would then snowball into more tests, anxiety, money, surgery, lost wages chasing something that wasn't there.  So asking for scans isn't always the appropriate thing.  A knowledgable pcp, onc or LT effect specialist would taylor a good follow up protocol for you that is going to be different than mine or the average woman. 

Good Luck with everything!

Cathy

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I had "normal" mammograms for years.  Mine was found on a fluke ultrasound--which I demanded after a "normal" mammogram because I just had a funny feeling.   I believe God was tapping me on the shoulder.  There are not always symptoms.  All you can do is be vigilent about tests and demanding when you feel something is not quite right.

 

Hugs, Renee

Lynn Smith
Posts: 1265
Joined: Mar 2011

I had 2 benign tumors at 20,dx at 62 and now 65. After my first 2 tumors I never missed but 1 check up with my doctor.That was in the beginning at 20.Saw the doctor first semi annually and then annually.He felt the breasts and checked under my arm.Soon after came the mammo which downright hurt.Made of metal.Cold and was lowered down manual/gradual but the problem is the thing got out of hand and it came down on my breast very very hard.i had 3 ladies rush in and catch me as I was hanging and passing out.Now the new improved mammos and doctor exams are the best.Also do self exams,check under the arms and the breast area. 

Since benign tumors at 20 I had a few more scares BUT it wasn't till my grandson elbowed me I had severe pain.In 2 weeks I went to the doctor.He felt nothing but said wait till I had a mammo in 5 months,I did and the tumor was found.I still have to wonder about that.Things had gone good for years then the blow at 62. The tumor was only 1/2 centimeter so it was caught early.This is why I think it was a blow to my breast that already had a history of  5 tumors before the bc and another 3 more after my dx but all those were benign.All in my left side where the cancer was found.

As you can see it's been a whirlwind since 20 for me.BUT I am fortunate.

Wishing you the best.The above pretty much covers it.Self exams are good but the malignant tumor my doctor didn't find.Mammo did. IMO it was in the beginning stages.

Keep up with your doctors. Self exams and mammos.

Lynn Smith         

fullyloved
Posts: 38
Joined: Oct 2012

Thanks Cathy for your input. I know my doctor is concerned about not doing too many tests because I am younger and I have a longer time for radiation to build up in my body. I also know that one can overtest. I have also been told that they don't reccommend mammograms so much before age 40 because the breasts are denser and the mammograms are harder to read, and therefore often inaccurate. So I don't really want to subject myself to tests that may not really benefit me a lot. If I would have had radiation, I might push for more careful testing since my risk would be increased so much.

As to finding a good doctor, I'm having a hard time with that. The PCP I did have dilled and dallied around while I was sick for 6 months with lymphoma and feeling as rotten as an egg. Neither do I get good service there. It feels more like you are one more patient to push through than a person who needs personal, individualized care. And now with my cancer history, I want a doctor who is on top of things. So I'm currently on the hunt. With having only recently relocated and having the rigmarole of switching doctors, I'm not looking forward to doing it yet again, and having to fight the system at my current doctor's office to get my records released.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Good Luck with your PCP search.  When I needed to find a PCP more in tuned to potential LT effects than my old one, I asked my radiation oncologist for a recomendation. I took his advise and my new PCP is "so far so good".  You said you have relocated, can you ask neighbors, coworkers, etc for recommendations?   It is such a hassle, considering all the records you've accumulated.  Hopefully it will go smoothly for you.

Dense breasts were just in the news last week.  I believe it was in NY state the radiologist must inform the patient if they have dense breasts.  I believe Breast MRI's and or Ultra Sounds might aid in sorting out a mammo. Again, it would be good to find a doc who you could discuss and handle all these types of things.  Sometimes we still need to be our own advocates and educate ourselves.  It's a great balancing act being a long term survivor. 

I wish you the best!

Cathy

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