Saw the surgeon today--UPDATED 5/5

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louieloui
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Date Joined Apr 2005
Total Posts : 44
   Posted 5/4/2005 4:32 PM (GMT -7)   
I went in for the Fine Needle Aspiration and ended up not having it.  The surgeon examined me, did an u/s, and said that the findings were consistant (he saw the same stuff in both breasts) and looked benign.  Said to do a follow-up w/him in 6 mos.  He said that my glandular tissue is very dense (if I'm remembering it right...it's all a blur as I was kinda shocked I wasn't going to have the biopsy done), I have way more of it than most women, and it's all over my breasts--not just centralized. 
 
My husband was there and he's confident w/the results.  I went in fully expecting to have the stuff drained from the grape-sized "cyst" and have an answer.  Now I feel like I'm back to square one.  Please someone tell me that if the surgeon thinks it's benign and no big deal that I can rest easy now.  I keep thinking of my grandma and aunt (and other cases of "the surgeon was confident it was benign but it came back malignant) and saying "what if?!"

Post Edited (louieloui) : 5/5/2005 3:22:58 PM (GMT-6)


gma
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   Posted 5/4/2005 4:42 PM (GMT -7)   
Gees this is a tough one, but since the surgeon was the one to tell you he did not feel surgery was the answer, I would feel a little more comfortable. Are you anywhere near a breast cancer center where you might get a second opinion? You can take your films there and let them just do a second reading. Having a family history makes me a little more uncomfortable. He knew you had the history, right? What kind of surgeon is he? Just a general surgeon? Or does he have a specialty? How about your regular family doctor or primary care doctor? How do they feel? Don't just take this answer as final, look into it a little more for your own peace of mind. Husbands can feel more confident because they don't want you to have to go through anything. They tend to believe a little more quickly. I think I would send out more feelers. Hugs MK


Tavish
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   Posted 5/4/2005 4:59 PM (GMT -7)   
I'm all for a second opinion. The surgeon can make an educated opinion about what lies in the breast...but without looking at a cellular sample, there is no way to be sure. Fine needle aspiration seems like the least invasive of the biopsies, so it seems like a logical choice. Especially since you said you are reminded of other relatives, if it were me, i would get a second opinion. Good chance that this surgeon was right, but I might rest easier if I had another look.

Lori


louieloui
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Date Joined Apr 2005
Total Posts : 44
   Posted 5/4/2005 6:53 PM (GMT -7)   
As a side note I am currently on my "phantom period." I had a partial hysterectomy in 2002 (they left both ovaries) so while I still ovulate and have symptoms, I'm never 100% sure when my cycle is (it wasn't regular before the hyster, either). However, I finally put two and two together tonight (the extreme fatigue, sore breasts, grumpiness). So that makes me wonder if that's why I had a lot of cysts in my breasts at today's u/s. It just seems like the radiologist, who did my last u/s, would've pointed out any other cysts had she seen them. Instead she took pics of the one that looked "noteworthy" and seemed content w/that.

The doc I saw today had a plaque on the wall that had to do w/breast surgery. However, I looked up his credentials through the clinics website and it didn't mention anything about breast cancer/surgery, so hard to say. He did know my family history (including my maternal grandfather who passed from colon cancer).

As for a breast cancer center, none that I know of. Is there a list somewhere? My family doc is the one that ordered the mammo (that the rad cancelled) and the u/s, then sent me to the surgeon, so she's up to date w/the situation.

I guess I was just ready for the aspiration and a more definitive answer than "looks benign to me." I'm sure it's nothing more than a cyst, I just want to know.

Tavish
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Total Posts : 2272
   Posted 5/4/2005 7:02 PM (GMT -7)   
Judy-
Where do you live? There may be a Comprehensive Cnacer center near you and you should be able to find a list on nih.gov or acs.org (american cancer society). Many hospitals have a cancer center and would likely have a breast clinic....even though it may be part of a cancer center, they usually see women with benign breast conditions and evaluate all sorts of breast issues. University hospitals are likely to have breast clinics too.... If you care to mention the area that you live in, one of us here might be able to help you with our experiences.

Good luck,
Lori


louieloui
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Date Joined Apr 2005
Total Posts : 44
   Posted 5/4/2005 7:10 PM (GMT -7)   
I live in Central Oregon. I'll check the sites you mentioned and see if it lists our hospital. I do know that for childhood cancer the kiddos usually have to go to Doernbecher's. Granted, they may be able to have treatment here locally, yet I'm not sure.

~Laura~

debbiR
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Date Joined Feb 2005
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   Posted 5/4/2005 7:27 PM (GMT -7)   

Laura:  I am so sorry that you didn't get any "real" answers today. I know how worried you still are. I have to agree w/ everyone else...GET A SECOND OPINION! With the family history, I wouldn't take a chance. I would do everything that I could to get answers to know that the decision was the correct one. 6 months is a long time to have to wait and worry. Follow your gut instinct. It usually isn't wrong. I wonder if it was your surgeon's wife if he would make her wait 6 mos and not do every test that there was to make sure that it wasn't cancer.

I'm not sure about the Oregon area but I do know that there is a cancer center in Seattle. I have had several friends that have gone there and were very pleased.

Hang in there. We are all here for you.



 

Post Edited (debbiR) : 5/4/2005 8:36:51 PM (GMT-6)


louieloui
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Date Joined Apr 2005
Total Posts : 44
   Posted 5/4/2005 7:32 PM (GMT -7)   
Debbi, thank you (and everyone else who has responded!!) for the kind words! I had to laugh because I believe the nurse practioner was his wife. I had no idea at the time, but when I looked him up at the clinics website, she was listed right under him...same last name. She had made a comment when he left my chart in the room--I was being moved into the u/s room--that "don't give him a baby or he'd leave it behind!" DH and I laughed, yet thought it was strange a nurse would say that about her "superior." Now it makes since...she is HIS superior!! lol

I checked out the two site but am completely lost at NIH. ACS listed an office in Eugene which is about 2 hrs. from me. Is that a cancer center or just an office?

~Laura~

debbiR
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Date Joined Feb 2005
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   Posted 5/4/2005 7:57 PM (GMT -7)   
Laura: I just spoke with my friend in MT that used the center in Seattle. Here is the info that she gave me:
 
Seattle Cancer Care Alliance
Breast Cancer Center Coordinator...Tracy Headley
206-288-2166
 
This center is rated #18 out of 1200 cancer centers in the world when checked for statistics for cure rate.
 
She said that when you call you will get an answering machine. Leave a message and someone will call you back w/in the hour.
 
My friend had nothing but praise for this center. She said that her local surgeon said that her lumps were nothing and to come back in a yr. She didn't feel comfortable with that (the old gut feeling) so she called Seattle. Her lumps were cancerous. She had a bilateral mast. and is thankful for the care she recd.
 
Hope that this helps.
 
Deb


 

Post Edited (debbiR) : 5/4/2005 9:00:05 PM (GMT-6)


Tavish
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Date Joined Jul 2003
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   Posted 5/5/2005 3:37 AM (GMT -7)   
Judy-
A Comprehensive Cancer Center may not be your only option, just that they have have some kind of accreditation or certification from the feds...there are only about 25 in the US (we have 2 here in SE Michigan). Most major hospitals will have a cancer center too, just does not have the CCC credentials. I hear local commercials for different hopsitals that have a cancer center, and with the prevalence of breast cancer, they are sure to have a breast clinic. That would mean that on a certain day of the week, for example, they see only breast patients.

I go to the cancer center at Univ of Michigan. I know that people just like you come there for evaluation of breast conditions, even if it is not cancer or not known. Same with mammograms and radiology, the waiting room is full of regular screening folks, not just cancer evals. You might even go online for some local or regional hospitals to look up their programs. You would get details about their offerings.

Not that we encourage folks to be hypochondriacs, but this is your body and your life, and we want you to be comfortable with the decisions made by the doc.

Oregon....you may be a first for us! We're all over the US and have had folks from Canada, New Zealand and Wales.
Lori


louieloui
Regular Member


Date Joined Apr 2005
Total Posts : 44
   Posted 5/5/2005 8:23 AM (GMT -7)   
Deb, I will call them today. Thank you again!

Tavish, I looked at our hospital's website and we do have a "cancer center" just not a specific type--like breast. We have the Sara Fisher project, but that seems to be for people who have already been diagnosed. Maybe a call to them would yield me the next place to check locally, though. I am definitely far from a hypochondriac, however I want a more definitive answer. Just like Deb's friend--I don't want to hear 6 mos. or a yr. down the road, "Oops...it is cancer! Our bad!" How often does that happen anyways??

Oh and...pssst...my name is Laura, not Judy. lol :o)

jaaustin
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Date Joined Jul 2003
Total Posts : 741
   Posted 5/5/2005 8:27 AM (GMT -7)   

Laura,

I'm with the others. If someone saw something that made them recommend a biopsy, I wouldn't just "sit & wait". I'd definitely get a 2nd opinion.

Hugs,

Julie


Do not go gentle into that goodnight,
Rage, rage against the dying of the light.
~Dylan Thomas


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 5/5/2005 9:08 AM (GMT -7)   

Laura, sorry....I don't know how I got your name wrong! My name is Lori (tavish is my dog), but I post under my dog's name to be incognito.

Just for grins, you may want to call your local hospital's cancer center and see if they have breast specialists.....usually you can get evaluated even if there is not a cancer diagnosis....or consider going to a major city to be seen.....but you are on the right path and I hope it ends up with a big fat benign diagnosis!

Lori



louieloui
Regular Member


Date Joined Apr 2005
Total Posts : 44
   Posted 5/5/2005 2:30 PM (GMT -7)   
Tavish, no worries!! :o)

Okay, I talked to my aunt and found out that I had/have some of my family history wrong. See below:

My aunt told me not to wait the 6 mos. and/or to get a second opinion. She was diagnosed at 35. Her doctor felt the lump during a routine exam--she didn't know it was there. He ordered a mammo and u/s. Everyone thought it was "just a cyst." She, being neurotic (her words, not mine) literally went across the street and had a biopsy done after she had been told to "wait 6 mos. and we'll re-check you." Even the doc doing her biopsy said, "It's too gritty to be cancer." Well, guess what...it was metastatic cancer. She had a double mastectomy and (thankfully) it had not yet spread to her lymph nodes. She did not have to undergo chemo or radiation, but was put on Tamoxifen for 5 yrs. Knock on wood, she's been clean for 5 yrs. since (total of 10 yrs.).

My grandma had Lymphoma...not breast cancer. But regardless, my aunt did and it's in my family tree now. My aunt was upset that the doctor hadn't gone ahead w/the biopsy anyways.

I have a call into my family doctor to let her know what happened yesterday and also to tell her that they thought my aunt had a cyst as well. My aunt strongly believes that had she not been pushy, the cancer would've spread to her lymph nodes and beyond (though not sure where it metastized the first time--I didn't think to ask her). I'm glad I talked to her--I am fired up now! lol

Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 5/5/2005 3:08 PM (GMT -7)   
Laura-
From my knowledge, which is not professional opinion, the lymphoma from your grandmother is not likely to have any bearing on your risk for breast cancer. Your aunt's dx at age 35 is much more significant. When they do a family hx, they usually ask if the relative was diagnosed early. Only about 5% of breast cancers are "inherited", and those diagnosed earlier are more likely than a post menopausal woman to have the "inherited" factor. Be sure to let the new doc know that your aunt was 35. Sounds like it may not have been metastatic though, or it would mean it did spread and she'd have likely had some treatment. But at any rate, hooray for 10 years cancer free!!!

You're on the right track, and you've taken the steps you need to advocate for yourself. Yea for you! Keep us posted...
Lori


louieloui
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Date Joined Apr 2005
Total Posts : 44
   Posted 5/5/2005 4:52 PM (GMT -7)   
Yeah!! Good news...I talked to my doctor, who at first said everything looked good--most likely benign due to having so many cysts. Then I explained how I was PMS'ing and her mood changed. lol We agreed that it was quite possible the extra cysts were due to hormones. I told her to change my family history for my grandma and then explained what happened to my aunt (her words..."oooh...not good."). Both of us thought that re-u/s'ing me sooner than later was best for everyone's peace of mind. She said 1-2 mos. I said 1-2 wks. :o) Doc said that was reasonable. I told her that if the large cyst is still there at the next u/s, I want it biopsied just to have a definitive answer. She seemed cool w/that. My spirits are much lighter now! I can wait 2 wks., but I'm not waiting 6 mos.

Tavish, I wondered that too (about the metastatic and what my aunt said). She did mention she had a hysterectomy (which I didn't know about) so maybe that's where it showed up at?? I know they left 1 ovary w/her. Next time I talk to her I'll find out as I'd like to know too, as I'm sure my doctor would as well. Does seem strange that the lymph nodes weren't affected, though. I talked to my dad (he's a nurse, though not dealing w/cancer) and he said that while it's good my grandma didn't have BC, the lymphoma isn't so hot either. I swear, sometimes it's like waiting for lightening to strike...especially when your family seems to be riddled w/this crappy disease.

Thank you all once again for your continued support, good thoughts, and advice! I am so happy I found this board and you wonderful ladies! You guys really deserve the world for your warmth, generosity, and plain 'ole patience. :o)

~Laura~

gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 5/5/2005 4:52 PM (GMT -7)   
Good for your aunt!!!!! She confirms what we have been telling you, doctors who guess are not always right. The only time I would believe a doctor guessing was if I was told they were "highly suspicious of cancer". That seems to be the terminology many use. That was what the radiologist told me and showed me on my films. I knew when he said that I had breast cancer and really didn't need a second opinion. His wife had breast cancer, too, I learned later.

We don't have anyone in Oregon right now, but we do have three ladies in Washington State. Postal (Gail) has been with us awhile and posts often. She lives in Kennewick. She sometimes goes to Seattle to see doctors, tho.

Keep searching for help. We are cheering you on.

Hugs MK

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