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All TopicsForum: Surgery - Before, During, and After → Topic: how to know if cancer is gone

Topic: how to know if cancer is gone

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Mar 31, 2010 02:34PM

Lhall wrote:

Hi girls,

             I was diagnosed with breast cancer in 08 and had a double mastectomy I had stage 2 grade 3 her2 positive no lymph nodes involved. Did chemo and herceptin. My question is how do you know if the cancer has spread or the chemo has worked? My doctors won't do any test to see if it's gone. And lately I have been having pain in my right side in the chest wall under the implant. I just haven't felt good for a while now.And i'm getting worried and the doctors just don't seem to care I can sometimes feel the lymph nodes swollen under the arm, but it hurts to press down to see if they are swollen. Is this normal or should I go get a second opinion some where. I just thought it is late in the game to change doctors now but I'm not sure. any advice.

Thanks Lynn 

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Posts 1 - 19 (19 total)

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Mar 31, 2010 03:05PM sammygrey44 wrote:

You definitely need to go and get a second opinion.  I would ask someone on this board who's in your area about an oncologist that will listen, be understanding, and get on the ball to help figure out what's going on with your chest wall and nodes.  I know that nodes can get swollen with things other than cancer, and that's probably the case, but you need to know for sure.  Your surgeon needs to take the discomfort in your chest wall seriously -- if he/she doesn't, I would look for another surgeon.  I'm not sure where you are, but I'm in Dallas and have an excellent surgeon, and I"ve been pretty happy with my oncologist as well.  If you're not in this area, post your city and maybe someone can give you a good lead.  I know all of this is stressful; hang in there!

Take care,

Sammy

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Mar 31, 2010 03:30PM Lhall wrote:

Hi Sammy,

                    I'm from Port Huron Michigan. And my surgeon when I told her about the pain she barely even checked me and I heard her in the hall way before she came in and said she has never seen this patient before and walked in and asked why I'm there. When she had my chart in her hand and shes the one who did the surgery. I was not happy.

Lynn 

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Mar 31, 2010 03:35PM Dawnmrn1 wrote:

Get your seelf to another surgeon.  I just changed onc, because my old onc never had an answer to my ??, so I change a few weeks ago and I love my new one!  I spoke to my BS, who is a doll, about changing onc and he said it is very important to be able to talk and get answers!  Good Luck, Dawn

Dx 1/22/2009, ILC, 6cm+, Stage IIIc, Grade 2, 24/24 nodes, ER+/PR+, HER2-
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Mar 31, 2010 03:43PM sammygrey44 wrote:

Lynn,

Get a new surgeon and oncologist -- the sooner, the better.  I'm hoping someone from your area reads and posts soon.  If not and you have a good relationship with your general practitioner, ask him or her -- also, search online for reviews of breast surgeons and oncologists in your area -- that's how I find my surgeon, and she's ended up being wonderful and very well-known and respected for her work with breast cancer patients. 

Take good care and keep us posted!

Sammy

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Mar 31, 2010 07:52PM Lhall wrote:

Hi Dawn, Sammy

           I have the same problem with my onc, he never can answer a question he just tells me it has nothing to do with the chemo. The only problem is all the oncologist are pretty much in together. I just don't know what to do I have to go and find a different breast surgeon cause she doesn't want to see me anymore she said I'm fine but sense the surgery she has only seen me once and that was for the recheck from the surgery.and than I went there for the pain and got know were. Everything I read says you have to keep being check for at least a year. And she hasn't. How often are we suppose to be checked? My chemo doc doesn't want to see me for 6 months. That just doesn't seem right to me but I'm not sure.

Lynn 

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Apr 1, 2010 01:48AM Susie123 wrote:

Lynn,

I don't think any of us can ever feel that the cancer is totally gone and will never come back, but, your Drs are not taking care of you. Fire them. Find new ones who will listen to you and do the tests that need to be done. If my nodes felt swolen I would be extremely upset and expect them to find out why.

Susie

Dx 12/22/2009, IDC, 1cm, Stage I, Grade 1, 0/8 nodes, ER+/PR+, HER2-
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Apr 1, 2010 02:16PM Lhall wrote:

Well this morning got up and cant move my arm it hurts so bad. I'm completely flipping out here. So I thought I would tell you wonderful ladies. I feel like i did when I found the first lump. I have done nothing but cry sense I got up this morning, cause I just don't know who to go to. My doctors don't care and I haven't gotten the care I think I deserve from them and there is no other doctors I can go to around here. My husband is so mad at them right now he doesn't know what to do.

Thank you for listening Lynn 

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Apr 1, 2010 02:38PM ariesrottie wrote:

Demand an appt. Go back to you BS.. You need to go for a checkup..... Get on the phone... We are praying for you... Let us know what happens... BUT CALL AND GO!!!!!!!

Donna

ariesrottie

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Apr 1, 2010 02:52PM Leah_S wrote:

Lhall, in a place the size of Port Huron I'm sure there are other oncs and surgeons. You're upset and frightened now (understandably!) so it makes this whole situation so much harder.

Maybe start by calling the American Cancer Society and also your family doc. If you can't get help that way, maybe go to the emergency room (NOT at the hospittal where your current BS practices!) andtell them about the pain in your arm etc. You might get faster help that way. It's possible that it's benign, but it still shouldn't be ignored.

Best of luck.

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Apr 1, 2010 03:05PM sweatyspice wrote:

The closest Comprehensive Cancer Centers are in Ann Arbor and Detroit.  I know it's inconvenient, but is it possible for you to go to one of those? 

U. Michigan Comprehensive Cancer Center

6302 Cancer Center
1500 East Medical Center Drive
Ann Arbor, Michigan 48109-0942
Tel: (734) 936-1831
Fax: (734) 615-3947
Toll Free: (800) 865-1125

http://www.mcancer.org/

AND

The Barbara Ann Karmanos Cancer Institute

Wayne State U. School of Medicine

4100 John R
Detroit, Michigan 48201
Tel: (800) KARMANOS
Fax: (313) 576-8630

http://www.karmanos.org/

Dx 8/2009, DCIS, Stage 0, Grade 3, ER+/PR+
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Apr 1, 2010 04:51PM sammygrey44 wrote:

Lynn,

Yes, call the American Cancer Society or your doctor and get a referral to someone else.  Here's the number for MD Anderson -- maybe they can refer someone; I know MD Anderson is highly esteemed when it comes to cancer treatment.  1-877-MDA-6789

I wonder if you're showing signs of lymphadema. . . I just don't know, but I'm certainly hoping the best for you.

Take care of yourself and call or have your husband call.

Sammy

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Apr 1, 2010 08:09PM Lhall wrote:

Thank you for the information I will call all of them to see what they say. I thought if I had the breasts removed I wouldn't have to worry anymore cause that's what I was told. but than something else that wasn't true they told me. Thank you for listening to me complain.

   Lynn 

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Apr 1, 2010 08:23PM nlortiz wrote:

Lynn, I just happenned on here and read your post.  I have 6wks ago, finished with reconstruction and will have nipple tats in 6 more.  Anyway, My cancer onc says we DON"T know if we still have any cancer within us, (if we're not having obvious symptoms, of course)  She says only time will tell.  She doesn't want to run any tests either.  (My niece gets a PET every year for BC,).  Anyway, she, the onc., told me if I DID develop pain or other problems that I don't have an answer for, for ex, pain in the back for no reason, no exercise, or anyting, to definately go in.   If I do have a problem, she is always willing to listen and go further, tho.  You definately need to see someone for the pain and swelling.  (I had minor swelling in a lymph node not too long ago and my Surgeon whipped me in faster than I could count to 1)  I wish you the best of luck and please tell those who don't want to listen to you to GO STRAIGHT TO HELL!!  You know your body and you know when something is wrong. Again, good luck, and go kick some butt and get the care you need and deserve.  Norma
Dx 4/4/2008, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Apr 2, 2010 05:28AM suemed8749 wrote:

Hi Lynn - So sorry you are going through this after surgery. We have much the same dx - stage 2, Her2+, grade 3, node negative. After I finished treatment (unilateral mastectomy, 6 TCH tx, Herceptin every 3 weeks for a year), my onc ordered a PET scan (I also had one before TX.) I'm confident that he would not blow me off if I complained of the symptoms that you're dealing with, and if he did, I'd replace him. Take the wonderful advice of these ladies and find someone who will listen to you.

Let us know how you're doing - Sue

Dx 1/15/2008, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Apr 2, 2010 08:26PM Lhall wrote:

Well talk to the chemo doc and he won't do a pet scan he just took blood. But I don't see what that's going to do when my blood levels looked good when I was diagnosed. And I went on line to see how you would know if the cancer is back and I just sat there and cried cause I have alot of them systems the swollen lymph nodes and arm and shoulder pain and what really got me was the abdomen pain I have had two laposcopy surgery's and found nothing. So now I'm really flipping out. I am suppose to go to cleveland ohio for the bowel problem and stomach bloating but now I think thats a waste of time. Just thought I give you my up date.

Lynn 

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Apr 2, 2010 10:31PM sweatyspice wrote:

If you're supposed to go to Cleveland anyway, Case Western Reserve is also a Comprehensive Cancer Center. 

http://cancer.case.edu/

Case Comprehensive Cancer Center

11100 Euclid Ave., Wearn 151
Cleveland, Ohio 44106-5065
Tel: (216) 844-8562
Fax: (216) 844-4975

Here is NCI's national map of centers: 

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

Please stop diagnosing yourself and upsetting yourself.  You might be right, but you might be WRONG, too.  Please, please find another oncologist and get a professional opinion!!!!   Even if you're right and the cancer is back, you still need someone to help you figure out how to treat it!

Dx 8/2009, DCIS, Stage 0, Grade 3, ER+/PR+
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Apr 2, 2010 11:10PM Boo307 wrote:

Lynn,

The way I have always had very good luck finding a new doctor is to ask an expert.  When I moved to a new area of the country when I was pregnant, I asked the nurse who answered the phone on the maturnity ward who she would choose for an obstitrian, and got a great doctor.

You might talk to a nurse in the treatment room which oncologist she would recommend.  Or you might ask a doctor you trust who he would have his wife see.

Remember you are the customer and the doctor works for you.  You need a skilled, knowledgeable doctor who can listen and help you understand the answers to your questions.

You might try entering the Neratinib Clinical Trial as you are probably eligible.  A requirement is that the cancer hasn't recurred and they test and evaluate you to determine if it has or hasn't. Just a thought.

See the thread of women in that trial http://community.breastcancer.org/forum/80/topic/740167?page=15#idx_429 

Information about the trial http://clinicaltrials.gov/ct2/show/NCT00878709?term=early+stage+neratinib&rank=1

Best wishes,

Boo

Dx 3/18/2008, IDC, 1cm, Stage Ib, Grade 3, 0/1 nodes, ER-/PR-, HER2+
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Apr 3, 2010 02:46AM Lhall wrote:

Your right sweatyspice I need to stop looking on line. I'm looking for a new doc now so I can quit worrying. And thank you for the site for Ohio I will look into it cause I will all ready be there. All you girls are great and give good advice thank you so much.

Lynn 

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Apr 13, 2010 05:29PM Lhall wrote:

Hi girls,

               Well went to Ohio cleveland clinic. And she wouldn't touch me after I told her all the problems. She told me i had to see a onc. so I can get a scan done to make sure it isn't cancer cause of the shoulder pain and arm pain and the swollen nodes. She gave me some doctors names but I'm really scared cause she didn't seem to reassuring. And she felt the lump under the implant so I know I'm not crazy.

Lynn