Very uncertain about my treatment

sims2addict

Very uncertain about my treatment

sims2addict

Hello Ladies,

I was diagnosed with BC on Friday (4/11).  I felt a lump in my left breast and had it checked out. I had the mammogram, ultrasound and biopsy done on Thursday (4/10).  The surgical doctor called me on Friday (4/11) and told me that the lump came back positive for cancer, but the skin they tested (under my left breast) came back negative. At this time he told me it was a spindle cell breast cancer, and that I would probably only need surgery to have the lump removed.

On Monday (4/14) I had a CT scan and MRI done. I returned to the surgeon office on Tuesday for follow-up.  My husband joined me for my appointment. When they took us to the exam room, the medical assistant did not know what tests I was there to follow-up for. I told her the two tests. I here her and the doctor in the hallway talking, neither of them have the images or results from my tests.  The kicker of this is that I got a copy of the images the day of the tests, before I left the hospital.  I told the doctor I had the images on cd, thinking this would inform him that the images should be available via computer.  He asked me if he could use the cd and he would go over the images with me.  We follow him to another room. I notice that the room he took us to has "break room" on the door.  It wsa very small break room within the office, but it had a second door that lead out to the main hallway of the hospital.  During the time he was gong over the images and treatment, a lady who work in his office walked through the area we were sitting in.

The doctor now tells me that because the lump os so cose to my skin, that he want me to do chemo first to shrink the lump before I have surgery.  The CT scan and MRI revealed I do not have cancer present in any other part of my body.  The only thing in question is rather the cancer is in the tissue of the left breast and if it has spread to the lymph nodes.  

I can physically feel my lump, and you can tell by touching it how close it is to the skin. I can't understand why he gave me one diagnosis, and now has completely changed that diagnosis.

The other thing that makes this so hard is the unprofessionalism and lack of bed side manner.  I'm not challenging his expertise, but he rushed through everything he told me, barely answering my questions.  I asked him what stage I was in, he did not give me a straight answer. He's talking about cutting my breast off like he just taking a tooth out. I know he deal with this on the daily bases, but tha's still no reason to be insensative.  I am already set to see another doctor, cause I refuse to go back to this one. 

My situation is, I'm 33. No one in my family has ever had breast cancer.  I was told I am in stage 2 or 3, depending on if my lymph nodes or tissue are involved.  I know that the cancer is not present anywhere else in my body, and it is not present near my chest wall.   The lump I have is just under 5cm. It doesn't hurt, I don't feel ill.  The lump is pretty close to the wall of my breast.  I have a pretty large size chest, so I'm thinking they should be able to save most of it.  I was going to look into getting a reduction before all this occurred. 

I have no idea what to expect. Do I really have to have chemo? I guess that doctor telling me I didn't at first, making it hard for me to accept now. Is there any chance of them deciding to remove the whole breast? I pray not, that would devastate me.

Any advice suggestions or help is much appreciated 

mrsb

Hi I am sorry you have to join us.I wanted to just wanted to say hello  until some wiser heads came along and answer your questions. I remember how hard it was for me when first struggling with the diagnosis to get up the courage to post. I am sorry that your surgon came across as a clod. I thought that too when I met my sugeon but 5 years out i realise that was his way.He turned out to  be a gem and provided me with much guidance and excellant care. Hugs Mrs B

LorenaB

I'm not the one to answer your questions -- hopefully you'll get some good responses to them -- but in terms of the doctor, I would say: find someone who you are comfortable with.  I did NOT like the surgeon who gave me my diagnosis, I thought she was cold and not very good at explaining things.  I ended up switching to a large cancer center and finding an excellent team of doctors who are both smart and compassionate, and have no problem taking the time to clearly answer all of my questions.  This is your body -- you deserve the best!

AnnNYC

I'm glad you will be seeing another doctor and not returning to this one.  I totally agree with you about the lack of professionalism.  And as for questioning his expertise -- was he recommended as an expert, or is he just "some doctor"??!! 

There are excellent doctors and centers, so you should have the best care possible.  I would say that in any case, but especially because you have been given an unusual diagnosis -- "spindle cell" is rare. 

The only conceivable reason for sticking with this guy would be if he has published on spindle cell and half the spindle cell cases in the U.S. are referred to him -- but it doesn't sound like that's true of him.

Decisions about chemotherapy aren't normally made by a surgeon anyway -- a chemo plan would at least be in consultation with an oncologist, and usually be almost entirely in the hands of an oncologist.  Maybe this surgeon "changed his mind" about your treatment because he read something over the weekend, or talked to an oncologist?  At the very least, whoever is treating you should be able to spend focused time in a room with you, and if they don't volunteer why they "changed their mind," there should at least be an atmosphere where you can ask that question.

swimangel72

Hi Mlvaughan - welcome to the club that none of us wanted to join. I'm sorry about your dx and the unprofessionalism of your doctor. Definitely get a second opinion - and also ask for a second opinion on the Pathology report. My doctor wouldn't do ANY surgery on me at all without a second opinion on the pathology report. Even if it takes another week, do it. Actually - when you find another doctor, as him what pathology lab he prefers to use and have he order the biopsy tissue samples sent there. Better be safe than sorry! You sound like a smart woman - so stay calm, do your research (this web site has TONS of information) and if you need our help, feel free to ask! We're all on the same roller-coaster ride together (want to sit in the front seat with me?) Hugs and best wishes!

AnnNYC

mlvaughan -- swimangel has a good thought about second opinion on pathology.

Dr. David Page at Vanderbilt in Nashville seems to fit the description of someone who has published a lot on spindle-cell carcinoma.  I have no personal knowledge of him, but saw someone else on these boards mention that they got a pathology second opinion from him.  And then when I googled "spindle-cell/breast cancer" I found this paper of his: http://www.nature.com/modpathol/journal/v16/n9/full/3880862a.html 

Linda1

Mivaughan,

I totally agree with your decision to meet with another doctor. This is all too confusing to deal with anyway. You shouldn't have to try to sort through it with a doctor who is so disorganized and uncaring.

Also, I agree with AnnNYC. I find it odd that the surgeon is the only doctor you're talking with. In my case the surgeon did the biopsy, but the results were read by a pathologist. Yes, the surgeon gave me those results, but she made it very clear that she is part of a team evaluating all this. The same was true with my lumpectomy and later mastectomy. The surgeon referred me to the oncologist, but she didn't attempt to make any decisions about chemo or radiation, saying that those plans should be made with the real specialist in that area, the oncologist. If your doctor was going it alone, it doesn't sound like a good person to be working with. if he was working with other doctors, you should have had the opportunity to talk with those doctors directly. I hope things go better with the next doctor!

Linda

sims2addict

Thank you all so much!  This support means the world to me right now. 

I was sent to this guy by my pcp, he's a surgeon that specializes in women's health, but not specifically the breast (from what I have read).  The second doctor I am going to is located in Baptist Hospital (Nashville). They have a cancer care clinic there.

I will definitely take the advice to have the Path done again and re-read. I just feel so uncertain about what this guy has told me. People can make mistakes. The other concer is I have good insurance, I have to make sure they're not sending me through unecessary changes just so that can charge my insurance.

Again, thank you all and ((((( HUGS ))))) I wish you all the best in your fight! 

FacingLIFE

PLEASE know you are not alone. We all know the anxiety and fear that comes with the first diagnosis of breast cancer. I am so glad I got a second opinion. Find the best, most highly recommended breast surgeon affiliated with a top hospital. If I had used the first breast center, the one that found the tumor in my mammogram but missed the other surrounding tumors and tiny tumor on the other side of my breast, I would be in a very bad situation now.



For my second opinion, and since I live near San Francisco, I went to one of the most highly recommended breast surgeons, Nima Grissom and California Pacific Medical Center. She sent me immediately to the Breast Center at Children's Hospital for an MRI and further biopsies. Their diagnostic testing found the tumors that my local breast center MISSED COMPLETELY.

Our small, local breast center made me wait 15 days for a mammogram due to understaffing. Then I had to wait another 10 days for needle aspiration because the local hospital had pathologists on vacation. Then had to wait another week for path reports. All the while the local breast center was telling me don't worry you can have a lumpectomy and radiation.



The breast center at Children's Hospital in San Francisco gives you results of your mammogram the same day. they show you your mammogram on a large screen, they explain what you are looking at. Pathology results should be provided to your surgeon within a day or two. Your surgeon should explain the results fully and tell you your options.



I will always be thankful that I got the second opinion and found Dr. Grissom. Dr. Grissom explains everything thoroughly. She is the BEST! She speaks to you with respect and compassion. Don't let anyone rush you into a decision. As Dr. Grissom recommended to me, ask for a oncogene test on the tumor so that you can make an informed decision based on science.



You can get through this treatment but find the best doctors available. Not all breast centers are competent to give the best diagnosis or care. Not all oncologists are the same, you can get a second opinion regarding their recommendations for treatments also. I wish I had. Now I'm going for a second opinion on further treatment post surgeries, post chemo and post aromatase inhibitor. If I sound demanding, it is because I've learned I have the right to be. I want to make the best decisions possible for the balance of my life. I'm 61 and believe that quality of life is very important. You learn during this process to become your own advocate.



If I were starting over with a new diagnosis, my steps would be:



Find the best doctor. Find the best doctor for a second opinion. Choose the best breast center with the best equipment (digital mammogram, MRI, diagnostic lab) and top pathology lab. Search for a highly recommended oncologist for adjunctive treatment. Don't settle; fight for your rights for the best treatment.



I live in Marin County, one of the areas with the highest rate of breast cancer in the United States, wouldn't you think that our local breast center would be staffed with the best breast cancer specialist?

DX 9/25/06 (found my lump on 8/31/06) waited 3 weeks for mammogram), mastectomy 10/31/06, Stage 2A, high risk for recurrence score 32 on oncogene test, 0/5 nodes, ER-, PR+, HER2-. Dose Dense Adrimycin and Cytoxcin followed by Taxoterre. Had to stop Taxoterre due to high infection rate and severely comprised immune system. Started Arimidex after 5 months on chemo. Stopped Arimidex 4/08 after taking for 9 months because of too many side effects especially bone pain and esophageal pain.

sims2addict

Wow Facingchemo!  You definitely inspire me to make sure I'm demanding in getting the best care I can find.  Baptist does have a top breast cancer care center in Nashville. Vanderbilt is also a top facility. I may go there for a third opinion.

The doctor I am seeing at Baptist comes from a referral from my Husband's boss (Dr Laura Dunbar). She just finished her treatments for breast cancer.  I also found a couple of articles of other patients who went to the doctor and had much success.

AnnNYC

wow! mlv -- I had no idea you were anywhere near Nashville when I mentioned Dr. Page at Vanderbilt for a pathology opinion!

I'm so glad you have another Dr. lined up already -- especially now that you clarified that the first surgeon you saw doesn't even specialize in breast cancer, just women's health in general..

AnnNYC

sorry -- posted twice for some reason...

Dx 3/9/2007, IDC, <1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-

FacingLIFE

Glad to see you are doing your research. Your work will pay off when you feel comfortable with your decision.



When I went for surgery I was comfortable with the knowledge that I had made the right choice and was ready to remove the cancer from my body.



The anxiety with diagnosis and not knowing which procedure is best was worse than the surgery.



Best wishes in finding the best care and for full and complete recovery.

mary6204

So sorry to hear your story.  I think you definately should get a second opinion.  My surgeon was wonderful, so I know there are some out there.  He should give you so much time for questions and understanding. I'm sorry you are so confused.

I was told in the beginning it would probably be lumpectomy and radiation, but since it was an aggressive type of cancer, chemo was the only way to give me better odds on not having a reoccurance.  I am 1/3 of the way through chemo, and it is not easy, but I'm doing pretty well.  If you get to that part, and I hope you don't, just remember  everyone here is so giving and helpful.  We can all get through this together.  God Bless, Mary

myheidiscrapbooking

Oh my gosh, what an experience you had. GO to another dr. - I find if you have a "breast center" (usually in hospitals) it will help SO much.  Usually you have chemo if its in your lympnodes but not all th time. They find that with younger women like you, chemo works even better. Your "new" dr. will help you with this decision. I would do this right a way. I had a 2nd opinion and my insurance paid no problem.
Take care and keep in touch.

Big hugs.

Heidi

sims2addict

~~UPDATE~~

I met with the second doctor, and she was soooo much better!! She was informative and compassionate. When I told her my story she said, "wow, you have been through 2 of the worse things a woman can face and with in six months." (I had a miscarriage in Dec).

They only suspect one lymphnode to be involved, she took samples of the cells to test it for cancer.  She also scheduled me for a Pet/ct scan.  So far the plan is chemo, then surgery, radiation, and a reduction. I'm happy about the reduction, I was planning to get one before all this occurred. I have back, neck, and shoulder pain from my chest being oversized.

Thank all you again, you don't know how encouraging this has been.  I been telling all my friends and family about the support I have gotten here

Linda1

mivaughan,

Yaaayyy!! I'm so happy that you went to a second doctor and had such a good experience with her. I love all the doctors I've worked with, and it makes all the difference in the world.

BTW, I also ended up having a reduction. After several months with an expander on the mastectomy side, two weeks ago I had the surgery to put in the implant and reduce the other side. I'm feeling good, and it's looking great.

Sounds like you've got a good plan now, so I look forward to your progress reports!

Linda

AnnNYC

mlvaughan -- I'm so glad you found a good breast specialist.  Please keep us posted!

Best,

Ann

YouCanThrive

I'm so happy you've taken the initiative to get a doctor that patiently and compassionately answers your questions and concerns. This is imperative for any patient, and if your doctor makes you feel rushed or is annoyed by your barage of questions,--- get another doctor.

You'll be fine on this journey because you've already proven that you're and advocate for yourself.

It is not uncommon for chemo to be given BEFORE surgery in the case of tumors over 3cm.

This is also a rare type of cancer, so don't be angry at the first surgeon, he probably just didn't KNOW.

Be well, be happy

I'm sending you light and energy for a very successful and empowering journey through the maze and haze and enlightenment of diagnosis and treatment. You are strong and you will be just fine.

Luana

http://youcanthrive.org

sims2addict

YouCanThrive - you are right, I am not upset at the 1st surgeon because of the diagnosis or treatment he wanted to give, but I was more so frustrated with the lack of professionalism, the rushing, and unorganization of his office. But, I'm going to say prayer for him and all of his patients. I just pray that he is making the best judgments for all of them, and not putting their lifes at risk. I pray he doesn't have selfish motives behind the decisions he make. And with that, he is old news, I have my new doctor and I'm very pleased with her

After apeaking with my new doctor, and getting advice and from the ladies here and my family and friends, I agree that doing chemo before my surgery may be best for me.

Thank all of you ladies for the well wishes, and I wish you all success in your journies.  This is just a test, and all tests become testimonies   God Bless!

angelaw

Hi Everyone:  Glad there was a good ending to the search for professional help.  Only want to add a reminder to those reading this involved in the same search for medical help:  DON 'T WAIT! get those second opinions as soon as possible.  Tumors can double in size in three months so GET GOING AND GET HELP. So glad Smiley was prompt in her medical care.

anitach

I am looking at having double mx with immediate (hopefully!) reconstruction this summer and am looking for a surgeons in Nashville. Can you please PM with any info you have on the Dr.'s.... the good and the bad. I really appreciate any info you can give!

Anita

sims2addict

Hi Anita,

The surgeon I used was Dr Laura Lawson, she's at Baptist Hospital.  She was WONDERFUL!!  There is another doctor in the same office Dr. Dunbar, who I have also heard was really good.  Baptist has a breast care center, so they are more specialized.  I hope this helps!  Please let me know if you need any more information.  

LolaHank

Sims2addict:  Get another doc.  If there are no bedside manners, tell him/her to take a hike!  You are paying this person.  You need compassion at this time.  There is nothing wrong with a second opinion.  Get it before any surgery!  It is your body!  In my small town, there are 2 cancer centers.  Mine is the best, they are always POSITIVE, the other has nothing to say but your going to die.... Nobody needs something like this.  Get a 2nd opinion, it is your right! Good luck! Sarah