Self Checks Post Mastectomy

tos

Hi ladies, I have been wondering how we check ourselves for any new lumps or anything of concern?
What do you guys do and thanks for any suggestions,

wallycat

I will ask my surgeon tomorrow what he thinks is a good plan.
I know he mentioned a baseline MRI in a year or so and then only every few years...but I imagine it is a regular MRI and not breast as we have none!
Not sure what else he will recommend.
My derm, who I have always gone for an annual whole body skin check, said she'd read some studies that show for the first 18 months, we should have 6 month full body scans. I guess I am all for extra checking. The more eyes and hands, the better I feel about this whole experience.
Some days I wish I were married to a doctor to save on driving time!!
Oh, and onc mentioned blood work but no time frame yet.

Best to you!

gshoemate

I asked my surgeon about this at my last post op checkup. There are so many lumps under my incision, how am I supposed to know what should be there and not be there. He said the scar itself for settle for at least 6 months. After that, we'll be able to know what is scar tissue and what is lumps.

tos

Thanks gals!

tos

Walleycat, did you learn anything from your surgeon?
I'm with you and want all the watching I can get.

Gshoemate, I'm like you evidently and still healing from my mastectomy, just finished with too many aspirations but concerned now about what to look for but haven't completely healed yet, still some swelling. Your doc has a good point, though thanks for adding his comments.

wallycat

Hi and sorry for not posting back.
Nope...nothing new. He said I would be following up with him for awhile so physical checks. I am meeting with a new oncologist and will reask the question to see what he thinks.
My 'fired" onco didn't seem interested or worried about what happened. 3 month blood draws were about the only thing mentioned on his end.

nagem

I had a bilateral in October (post-treatment) and I go every three months to my oncologist for blood tests and a feel-up, every six months to my radiation nurse practitioner for a feel-up and every six months to my surgeon for yet another feel-up. That's it. There's not much that can be done to get images of breasts that aren't there ...

tos

Ok, thanks Walleycat and Nagem, I realize we have a very small chance of it coming back but this is my second time on the other side so guess I'm sort of nervous at realizing I don't know how to check myself anymore if that makes sense.
Appreciate you guys writing in,

wallycat

Just a quick note to say I found a fabulous website and one of the topics was how to monitor for recurrence.
MRI was rated the highest for catching things.
Most seem to think physical inspection and mammogram if you have boobs. I meet with new onco tomorrow and will ask his opinion as well.

wallycat

OK, I met with my new oncologist this afternoon.
My appointment was for 2 and am sure he didn't walk into the room till 2:30...I got to my car at FOUR PM!!! He is sooooo wonderful, so knowledgeable, so tender and so sweet and understanding that to ease my worries I should just move in with him !!

He comes from MD Anderson so I think he is highly regarded.
So I specifically asked about follow up.
Here are his comments overall...
It really depends on the type of cancer (how aggressive, stage, type, etc.) each of us has. For stage 1 with no lymph node involvement, he laid out the "recommended" plan of every 3 months for the first 2 years, blah, blah, but he said he has found that that is often times overkill. That at a stage 1 cancer, it truly goes by how you feel and what your concerns are. I must have had a horrible look on my face and he said that he usually works with patients.
If someone is a neurotic worrier (like myself!!), he would happily order any test that could be explained (PET, CT, blood, etc.) because he finds that patients truly DO know and understand themselves and he also firmly believes that to have a measure of peace of mind is worth more than giving a crap about whether the test is actually needed.
If he felt anything was in order, he would not hesitate to make the test done.
Of course, if someone is at a higher stage or has a more aggressive tumor, than he customizes the care for that patient.
I guess the bottom line is to find a doctor willing to work with you and your comfort level and who is knowledgeable and whom you trust. Then go by what they say and let them know about anything causing you anxiety. A good doctor will want to relieve that as much as stay on top of the course if the disease.

WOW he was smart, quick, soft spoken, eager to listen...objective and understanding. WOW is all I can say about this man. I am thrilled I went for a second opinion!!

Best to you al ladies!

tos

Oh my gosh Walleycat, your new Onc sounds like a dream!
Good grief what a huge difference this will make for you, I am so happy you have found this person.

So if one has had a bilateral mastectomy they can get a mri? And would you please post the link to the website you mentioned that you liked so well, thanks!!

Sure appreciate your telling us about your visit. How wonderful once again to be in what you are feel are good hands, how reassuring for you!!

joanne_elizabeth

I try to do the self exams in the shower, but I was never too successful with them when I had 2 breasts. I have lumpy breasts that show nothing on mammograms so I guess it will be a challenge. I am so done with BS mammograms and BSEs and MRIs (the dye) makes me nauseous.

wallycat

Here is the site I found initially:
http://www.cancer.org/docroot/CRI/content/CRI_2_4_5X_What_happens_after_treatment_5.asp

MRIs would probably be full-body scan MRIs and not breast mris if you've had bilaterals. I believe there is no need for a contrast dye using a full body MRI (at least when I was a guinea pig for the first MRI at GE, I never had dyes for that).

tos

Walleycat, what a sweet person you are to send this link, thank you so much. I feel so much better and I don't know where my brain was at not realizing I could push for a mri, chemo fuzzie I guess.
You know my daughter's 2 bc tumors were not found on her mammo but on a mri!

Joanne Elizabeth, I just recently experienced a nightmare mammo situation and I have no trust there either although I have now had a bilat so that won't happen again.
I'm so glad the mri's will be available now.
I also have my "I don't knows" about blood tests as my bloodwork came out clean when in fact I did have a new tumor so I am not trusting of them either.

joanne_elizabeth

I had MRIs they just do the breast and they did use dyes.

Joanne

OLBinNJ

I had a breast MRI with no dye.

tos

Thanks ladies!