Newly diagnosed and terrified!
I was diagnosed with breast cancer recently. Stage 2, grade 3 tumor in the right breast. Aux Lymph node came back negative. The breast surgeon said I will most likely need a masectomy and a low chance for a lumpectomy, them radiation. Before surgery, I will need chemo to shrink the tumor. She said it is unlikely that it has spread but the only way to know for sure is surgery. I have an MRI in the morning, then meet with the oncologist to discuss my treatment. Does this sound familiar to anyone? Also, I don't understand why they cannot do a PET scan to see if it has spread prior to surgery rather than the breast MRI. Advice, suggestions would be greatly appreciated...BTW, I am 40 years old. Also, Do I really need chemo? TIA
Comments
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Sorry you are joining us. It is scary.....the beginning is the hardest part. I never got a PET scan because I was early stage. My doctors would not do it. Not everyone gets a PET scan. It depends on how advanced the disease is and the doctor. As far as chemo, did your doctor do an oncotype dx test? My medical oncologist ordered it and it can be helpful in deciding your recurrence rates with and without chemo. Ask your doctor about it. Good luck! -
In May, I was dx with recurrent cancer in the left breast. This time it was in 2 seperate areas, IDC, grade 2, stage 1a. Second area grade 3, stage 0. In 2009, it was DCIS, grade 2, stage 0.
I had a "lumpectomy" in my case I had a large breast reduction from DD to C which gave me very clean margins. I took Tamoxifen for about a year and quite. (I do not think that was the cause of it coming back). In my case, we did a CT scan and a bone scan to see if the cancer had spread. However, they can not tell unless the cancer is larger than 1 -2 cm. (Per Dr Susan Love's Breast Book)Usually they can not "Stage" a cancer until after a lumpectomy or mastectomy or really give you an exact size. So that is a bit confusing.
I do recommend that you ask for a PRINT OUT OF THE PATHOLOGY report. This is the most important information you will need to know. The following questions can be answered from a pathology report.
What size do they think your tumor is? What type of cancer? Estrogen positive (ER+) Progestrone positive(PR+) Her2 (- or +) If you are triple negative, then yes you will need chemo.
If your insurance will pay for it you can get the Oncotype DX or Mammoprint test. This will give you an idea on percentage of recurrence. My breast surgeon said that since it was not in my nodes that it is unlikely for it to have spread to the rest of my body.
I just had a mastectomy on June 10th. Took 3 weeks off work and am working 2 days in office and 3 from home. (Very blessed) I went with the tissue expanders and going to have implants. Currently I am waiting for my oncotype DX score. -
I would def ask for the Oncotype test to be done. I dodged chemo because of my low score of 11. We are both Stage 2 but I am Grade 1 and you are Grade 3 which is more problematical. However, I had a micromet in my SN. Still, my ONC was unsure about treatment thus the Oncotype test. Staging is typically done after surgery. I was Stage before my lumpectomy. The Oncotype test will also give you a % rate of recurrence. Mine was 8%. Good Luck!
Diane
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Stage 1 before surgery.
Diane
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What you just described is *very* similar to the past 4 weeks for me. On June 19th, I found the lump. Saw my OB 5 days later, mammogram 7 days later, biopsy the next day - June 27th, then results on Monday, June 30th. Invasive Ductal Carcinoma. Very quickly I went to a breast surgeon. Did contrast MRI first, then x-rays and bloodwork two days later, then the PET/CT on Friday of that week - July 11th. My doctor did tell me that PET/CTs are very difficult to get approved for insurance, if that's a factor. It's very expensive and insurance want signs that it is even necessary. No sign that there is any cancer in my lymph nodes, we are just waiting on the surgical biopsy. I had a full right mastectomy 4 days ago. So I've gone from not knowing I had cancer to losing my right breast in less than 4 weeks. I COMPLETELY understand - as we all do - how completely out of control you feel. I hate that phrase. Sounds so cliche'. Anyway, we are still waiting on the genetic marker test and the biopsy results from surgery before making a treatment plan. Can I ask why you want the PET so badly? My understanding is it is best to do both, but the PET is a much better scan, I know that. But contrast MRIs do provide a ton of information. To answer one of your first questions, yes - it all sounds VERY familiar. Write anytime :-)
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Welcome to BCO StacyBrian
We';re glad you found us and you probvably read while going through your last four scary weeks. We hope that your surgical biopsy shows all good. We appreciate your input as it is very scary just waiting with no control, and it helps a little knowing other felt just the same.
The Mods
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Brittney,
I was stage 2, grade 3, triple negative with one node positive, stage 2b. PET was not done. Do you know your tumor pathology/ receptor status? That is, ER, PR, Her2? If you are triple negative, then you will most likely need chemo. Grade 3 is often either triple negative or her2 positive. Grade 3 is the most aggressive grade. The good news is that in many cases (not all) it responds better to chemo than other types because chemo targets fast-dividing cells. I'll watch this thread for news, or feel free to private message me. I was 44 when diagnosed 2 years ago.
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Thank You all for the wonderful advice. You are all so brave and I am glad I found this site. I am her positive..My chemo will be THCP...doc said I won't feel that sick but I will lose my hair. I signed up for a clinical trial for a cold cap...May or may not get it.
My MRI results showed that the cancer has not spread within the breast...still waiting on the PETCT results. They ended up ordering one...I am hoping it the same as the MRI...no spreading.
the invasive tumor is a grade 3. I will be getting a port next week, which I am not too thrilled about but I understand that I need it. I will need it for a year.
Six rounds of chemo every 3 wks then surgery. Doc said most likely a masectomy...then radiation, then Herceptin monthly and hopefully this will be behind me! So much to take in!
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hi Edwards, I dodged chemo too - IDC, 1.1 cm, ER/PR+, Her2-, ONCA score 9%, they saw a cytokeratin positive protein tiny trace in Sentinel Node - had one removed,, is that what you mean when you say micromet?? they told me not to be concerned about it,,, want me to start Tamoxifen (I don't really want to take it though) - look forward to hearing how you are doing as you dx is similar and are you in TX? thanks!
Hi Brittany2020 - how are you doing - what is the latest for your treatment and surgery plan? how was your mRI?
and yes ask for the ONCA DX TEST, it helps - take 3 weeks though but can help your DR decide on chemo - you do have a faster growing grade 3 though so I am not sure if that automatically makes DR say chemo would be more helpful,, don't panic, keep calm, this all is overwhelming - I am 42, we are young and this is scary, write anytime - I am early stage too and in same age category in CT and recovering from rt mx and regrouping my emotions and managing healing etc... keep calm and leave a little sparkle where ever you may go,,,
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Thanks Sparke2014! PETCT is clear. I am day 11 post chemo, feeling better. Hair hasn't fallen out yet but I am prepared. Trying to stay positive. I am calmer now that I have more Information and a plan is in action. I do wonder if I should expect the same outcome/side effects after round 2. it will be the exact same treatment. I hope you are well and thank you for the message:)
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Brittney,
I was diagnosed In November 2006 with a IDC, Stage 1, ER/PR-, HER2+, grade 3. My tumor was fast growing and I was only a little bit under the cut off size for stage 2.
I had a mastectomy, 4AC, and a year of herceptin.
It has been 7 1/2 years since the end of the AC (6 1/2 years for the herceptin), and I am doing well and feel great.
Hang in there; you can do it.
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Wow! You have been through a lot! Bless you and thank you for the words of encouragement!
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I was recently diagnosed with IDC stage 2 and have a large tumor. MRI and PET Scan came back with no node involvement but I know that doesn't mean it's not there. I am currently 3 rounds in to 6 rounds of chemo. I have not had surgery yet but am hopeful for a lumpectomy. I am terrified! When I was diagnosed I was 100% certain that I was going to be OK. But as time goes on, and I do more research, I am feeling more and more like things will not be OK. I do believe that I will be cancer free after my treatment is done, but I am so scared that it will return. My tumor grew so fast and it was so large that I can't help but think I will have a recurrence. I am young and feel that I am going to spend the rest of my life waiting to be diagnosed with stage 4 cancer. I feel like I need to put on a strong front for my loved ones because that is what they need, but it is so hard. I just need to come on here and vent to people who understand me. Thank you for listening.
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Metoo14, I feel you! i know it is shocking and you are scared of what is to come. I will tell you this, since meeting with the oncologist and breast surgeon and devising a plan, I feel so much better. I have read a LOT about BC and my diagnosis in particular (similar to yours) and I feel a lot better about my outcome. Worrying and stressing about it will get you no where. you have to get into warrior mode and you will beat this thing! stay positive. this is not a death sentence, There are wonderful treatments out there. you will get through this. I am on TCHP ( taxotere, carboplatin, herceptin and. Perjeta) for 6 rounds every 3 weeks. I have my third round tomorrow. honestly, it is not that bad...definitely not as bad as I thought. I can do without the fatigue, but I know it will pass. Thank God you found it and trust me you will feel much better when you have a plan in place. Message me anytime. We can do this together! i find that if I stay busy, and of course, rest when I need to, I don't think so much. Good luck to you and keep me posted...you are in my prayers! God is good:)
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metoo14, I saw that u have already started chemo, so your plan is in place. I hope you are going to reputable sites for research...this is a good one. I am hoping for a lumpectomy too but I accept the alternative also. What ever will get this thing out, I will do...Keep your chin up! Don't think or worry about recurrence, I heard Herceptin is excellent in preventing recurrence. Will you be on it after your surgery? I will for a year total:)
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Brittney, thank you for the kind words! Reading what you wrote actually calmed me down. It's just been a flood of emotions but I do realize that I need to take it one step at a time. I am on Taxotere and Cytoxin every three weeks and it's going OK. Next week I go back for my 4th round. I hope your chemo today went well and that you aren't too tired. Do you also get a Nuelasta shot? I am still working so I am able to keep busy. I will have surgery when chemo is done, I will also have to get another MRI and PET Scan. My hope is that they will come back clean but my tumor is pretty large so I am trying to stay realistic. My fear is that they will find cells in my nodes, and I really hope I don't have to have too many removed either. Are you married? Do you have a lot of support? I know I couldn't get through this with out as many people that I have on my side. I will be on Herceptin for five years. I heard that it really helps but I have also heard that it has bad side effects. But truly I will do whatever I need to to survive. It helps that I can come on here and get support from you and many others who understand what we are going through. You are halfway through, you can make it through this!
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Thanks Metoo14! yes, I am getting the neulasta shot and yes married wih 2 little ones. i had a few aches but nothing serious from the shot. I took Clariton an hour before and again the same time the next day so maybe it worked. Try it out if you have side effects. I have a little help which is great. I am doing herceptin for a year total. This last round drained me. I have been sleeping non-stop and still feel tired. Had a really bad nose bleed but eventually stopped. I will pray for you. Don't fear anything! hugs to you:)
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Hi all, this is my first post and it is also coming after recently being diagnosed and just got home from surgery. I went in on August 13th for a routine mammogram. Caught completely offguard, the radiologist came in and told me that he saw two spots in my left breast and that they were most likely cancer and I would need a mastectomy because the tumors were in different quadrants. Just like that my life was forever altered. I am 46 and a wife and mother of three teens. I sat in my car and cried, too shaken to even drive home. I demanded on the biopsy as quick as possible which was completed the next day. Since I suspected what was likely to come back, I spent the entire weekend researching and ironically spent most of my time of this site.
By the time the results came back I already had an idea what I wanted. After much research and all the rave on this site about NOLA, I ended up having a BMX with diep 1 with nipple sparing. I went for a couple of consults before going but since I was ER+, PR + and HER2-, surgery seemed like the right first stop. What a whirl wind! And the fear doesn't subside, not really, just gets tempered temporarily, at least for me. I had surgery on 9/9/14 in NOLA and all went well. So far pathology confirms IDC, Stage 1, 1.5 cm and 2 cm, Grade 1, and sentinel node negative with clear margins. And yes, I did have the breast mri with die contrast which confirmed nothing on right side but opted for BMX regardless. I am still waiting for oncotype testing results and BRCA test and then off the MOs to decide my course of treatment. I am keeping my fingers crossed that chemo is not in my future but trying to prepare myself.
Thank you to all on this site for their insight on NOLA. They were amazing! Everything from transportation to food for my husband while I was in the hospital. I had a great surgical team including Dr. Lazarus and Dr. Delacroce. I wanted the best and truly felt like I got it. I will be going back hopefully in just a few months for the second reconstruction phase. It was the scariest thing I have ever gone through but my care was beyond expectations. NO regrets about going out of state. The doctors and nurses were on the phone with us daily from the day of my first contact til the day I met them.
So for now just taking one day at a time. Recovering and hopeful!
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Hi Girls, I'm really keen to hear from any of you with a similar dx. I haven't been coping well & need to hear some positive news. I had 8 cm of DCIS with multifocal IDC measuring 2.5cm. My pathology showed a KI 67 of 30 which I know is high for recurrence, also necrotic areas in the breast taken. I really wanted a BL mastectomy but the surgeon said there was no evidence of disease in the Left. Now have a lump in the remaining breast which on U/S looks normal. I'm really scared because I know what was removed if a very aggressive form of breast cancer. I'm frightened I won't respond to the treatment & when the treatment finishes the cancer will take over. Need to hear from some girls with similar dx who are doing well. Unfortunately, I did not have the opportunity to have chemo first & went straight to surgery. I have posted on a couple of spots of the forum desperate to hear from girls with a similar dx. My treatment has been AC & now on taxol for another 6 weeks. We don't get the perjeta here unless we have mets & God knows I don't want that to be the case. -
Gretta, what stage are you? Did you have positive lymph nodes? What is the hormone status?
You mention not getting Perjeta unless there are mets. Was your breast cancer her2 positive?
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Hi Peacestreng, I'm stage llb at time of surgery lymph nodes were negative. It was her 2 pos -
Gretta,
I was diagnosed over the Christmas Holidays in 2013. I have similar stats to you: Stage II B, Grade 3. I am Her2+, but ER/PR -. 1 node. I had necrotic tissue as well & other cysts and benign conditions in both breasts.
It has been a wild scary ride, but I am doing very well. This bizarre journey seems to have good news/bad news on each step of the way. Here are the positive thoughts I tell myself based on my stats:
Grade 3 is aggressive, but that also means it tends to make chemo more effective
Stage II is still considered early stage
Being Her2 + means Herceptin is another tool to fight the cancer...active treatment will get me past my 1 yr cancerversary
Surgery first means I was technically cancer free right away & the chemo is to fight stray cells and be insurance
AC/Taxol chemo is the gold standard of care for this cancer
For you, you can also add:
Hormone receptor positive means you can use the different hormone fighting drugs as well as Herceptin
Your nodes were clear
I still have some dark days & worry about recurrence. I try to remember the positive things I listed above to dig myself out of those dark days.
Happy you are almost done with your chemo! Good luck.
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