Timeline from biopsy to surgery
Hi -- I am new to the board. I had core needle biopsy last week and was diagnosed w/ grade 3, ER-/PR+ HER2+ IDC. The tumor is somewhere between 2-5cm (unclear pending MRI, based on micro calcifications in mammogram). No evidence yet it has spread to lymph nodes. I'm 43. I have an appointment with a surgeon scheduled for 2/27.
I'm concerned about length of time until surgery -- probably 3 weeks or more. Everything I've read indicates this is a very aggressive cancer type. Has anyone else had this type? Any insights about timeline?
Many thanks.
Comments
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Hi tmulholl, and we are sorry to hear that you have joined the club nobody wants to join, but happy you found us here. It often varies from treatment center to treatment center. What did the doctors tell you about the timeline? You could call them, and discuss your concerns.
We're all here for you, and please keep us posted!
Warmly,
The Mods
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Hi there tmulholl...
My diagnosis is similar, just with the ER/PR reversed. Two and a half weeks after my dx, I started neoadjuvant chemo for 6 rounds every three weeks, so will be looking at surgery after May. My BS and MO wanted to start with the chemo because I could be given the targeted therapy, Perjeta, if it was given prior to surgery. Perhaps that will be an option for you as well. Goodness, I was thinking you have a long wait to see your doctor--but Feb 27 is next week! Where is the time going??
--Lorie
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Hi Tmulhol
I too was very anxious waiting between diagnosis and surgery. I was diagnosed Oct 2, 2014 and had lumpectomy on Nov 7, 2014...so just over a month. I was anxious in between waiting to have all of the scans done that my surgeon required. The surgeon assured me that this wait would not change my outcome one bit. I was reassured to hear this.
Hang in there! The waiting is the hardest part...
Tanya
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Thanks all. It's reassuring to hear about others' timelines, and also about chemo before surgery options. That has been talked about, and it scares me, because I have said I want a mastectomy, and the only other reason I had heard for chemo ahead of surgery (besides trying to shrink the tumor to save the breast) was if the cancer had metastasized. Sounds like there are other reasons for it.
I actually have not seen a doctor yet; it's all been second hand through the nurses, who have been great, but are limited in what they can tell me. They have tried to keep the tests moving while I wait to meet with a surgeon. My original appointment was for Monday, but that surgeon is longer available, so I've been reassigned to another for Friday. I've tried calling, but was told he is not available by phone or email until after he has reviewed my case and met with me. Oncologist appointment is not until 3/11.
I'm just kind of dying here with another week or more ahead of me not knowing the way forward, and not knowing if the doctors suspect metastatic cancer. They are talking about my case, at the urging of the nurses, but there seems to be no plan to share anything with me until Friday.
The MRI results came back and show a 6.7 cm tumor in the right breast, plus a small mass in the left, and another on the right chest wall -- possible lymph node involvement there. I have another biopsy scheduled for Monday on the left breast, but no one can tell me if they are going to try and biopsy the mass on the right chest wall too. Differing opinions as to whether this is necessary if the breast is to be removed.
Ok, just venting now I guess. Just very scared about the future, and frankly angry -- justified or not -- at the doctors at this point.
Terry
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I feel for you and am in a similar position with biopsy results, Grade 3, HER2 positive, estrogen and progesterone positive, but tumor is 1.2cm.
I see my surgeon on 2/25 but oncologist on 3/4. Given that I am HER2 positive, I am wondering if I should call tomorrow to ask if an oncologist could be consulted earlier. The person on the phone (new patient coordinator) had said that if there was a need, the surgeon might be able to talk with the oncologist earlier for me.
If I end up with neoadjuvant therapy from the oncologist the following week, would there be a point to scheduling surgery on the 25th? I kind of wish I was seeing the oncologist first.
Your timeline sounds similar. I hope to read what happens with your communications with them over the next few days.
Meanwhile, I am trying to use a strategy of limiting my time spent on breast cancer. One hour in the morning, one hour in the evening, no more books, get out of the house, watch movies, see people, whatever, because the stress actually accumulates in my body if I get too immersed. At the same time, every time I do come on here I learn something else
Good luck!
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As kayb said one of the reasons to consult an oncologist prior to surgery if one is Her2+ is that there is a newer drug Perjeta approved (Sept. 2013) for neoadjuvent use only for early stage breast cancer. This drug is approved for tumors 2cm and larger and has shown to be very effective when added to chemo and Herceptin.
windingshores - it wouldn't hurt to talk to a MO prior to surgery, but technically speaking your mass is too small for Perjeta. Some oncologists have had success in getting insurance to pay for Perjeta for smaller masses, and also for use of the drug with adjuvant chemo/Herceptin.
tmulholl - I had mammo/US on Sept. 9, biopsy on Sept. 22, diagnosis Sept. 27, first surgical consult on Oct. 5, surgery Nov. 1.
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Thanks SpecialK for sharing your timeline and insights. Sounds like I need to cool my jets some on timeline. The Perjeta pre-surgery is a welcome possibility. Beats my doomsday metastasis speculation.
Windingshores -- Love the idea of limiting cancer time to one hour in morning and one at night. I'm going to try that. I'll keep you posted on my communications with the doctors. Good luck to you as well!
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Hey Tmuholl, I can definitely empathize, I had a tough time waiting between Dr's appts. First was the ultrasound, then a week later the biopsy, then another week later I'd see a surgeon, then the oncologist appt was a week after that, and then a radiation oncologist would be a week after that (I was briefly considering intra-operative radiation).
This led me to get a second opinion at a University hospital. They were set up differently - they have a dedicated "Breast Center", and when you first come in you can see the surgeon and oncologist(s) all in one afternoon. They all talk to each other about your case, and can get your questions quickly to the appropriate specialist. They were able to set up my surgery a couple of weeks sooner than the first group. I have no idea if that made any medical difference, but it was good for my peace of mind. On top of that, I really liked all the Dr's there. A year later I'm really glad about making that choice.
I have no idea if there's anything comparable near where you live, but more important is that you do have some choice - I believe a fair number of (most?) insurance companies will cover you getting a second opinion. You might be able to find someone who can see you a little bit sooner. And then if you're not happy with the first surgeon or oncologist, at least you'll have other options without feeling the clock is ticking too fast.
Btw, I'm one of those folks who is early stage, a 1 cm tumor, but I still got Perjeta after surgery w/chemo, no issues w/insurance. That said, some Dr's would think Perjeta was overkill for my case. Pre-surgery (neo-adjuvant) chemo wasn't an option for me because the biopsy never showed the HER2+. They actually thought I was HER2 negative.
One other thing I should mention, just because a lymph node "lights up" in a mammo or MRI that doesn't necessarily mean you have cancer there. For one, MRI's do tend to show false positives - not all Dr's are willing to use them. My mammo report mentioned possible lymph involvement, but the biopsy showed it was negative (and that was what the radiology Dr thought from the ultrasound). Unfortunately, it seems you can't really know until they do the surgery. Yeah, waiting is hard. Windingshores, I think you're onto something!
Best of luck to you!!
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Thanks everyone. This is so helpful.
The cancer specialists all meet on Thursdays at the "Tumor Board" (love that name), and will be discussing my case. Should have a holistic treatment recommendation by Friday's appointment with the surgeon.
I'm part of an HMO, so options for alternative venues are limited. I'm feeling much better about my team though. Things just don't move as fast as I'd like, and it sounds like that is a very common concern during this waiting time.
Also, this may be another topic, but I wanted to ask about talking to kids about cancer. I have a 3 and a 6 year old, and we will need to tell them soon. Does anyone have any insight on this, or links to good resources?
Many thanks!
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tmulholl, my wife and I have 3 little ones (2,4,6) we were able to just slowly talk about what is going to happening to mommy and how she is going to see the doctors and people will be coming over to help out. There are also some great books to read to them, they are age appropriate as the 3yo will not understand what the 6 yo does. My kids have not let up and are the same pre-diagnosis as post. The 2yo is very nurturing and when my wife feels bad she cuddles up with her (so sweet). You can do it, I know it sucks but one step at a time, get second opinions, ask questions. We are only 3 months from diagnosis and my wife was almost identical to you. We ended up going neoadjuvant with the TCHP protocol. We will do BMX after and we don't know about radiation yet but more than likely. Treatment #5 in one week.
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larod825 -- Thanks for posting. Your wife's diagnosis is remarkably similar to mine, as are your kids' ages. If it's OK, I have a few questions.
As far as surgery, it looks like your wife has only had lymph node removal. Is that correct? Are there plans for a lumpectomy or mastectomy in the future, and at what point?
I'm not familiar with the 0/2 nodes notation. Does that mean cancer had spread to the lymph nodes, or not? If not, do you know why the cancer is graded Stage IIIa?
I found the TCHP protocol definition, but none for BMX. What does that stand for?
How many months of chemo are planned?
Thanks again. It's so helpful to hear what others are going through. Hang in there.
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I copied your questions in italics and posted our answers in bold..I am not a doctor so please just use this for what it is worth
As far as surgery, it looks like your wife has only had lymph node removal. Is that correct? - yes..its called sentinel node biopsy (SNB), typically for her2 with neo-adjuvant the medical oncologist (MO) or breast surgeon (BS) might recommend it to see if there was/is lymph node involvement, if they look suspicious on the radiology or not. Because post chemo and targeted therapy the cancer hopefully should be gone so it is hard to tell if the nodes were involved. This also allows the MO or radiation oncologist (RO) to determine if radiation is required. Are there plans for a lumpectomy or mastectomy in the future, and at what point? - BMX (bilateral mastectomy, MX is short for mastectomy, LX = lump...) is in our future about 4 - 6 weeks after the last tax/carbo treatment...she will continue with herceptin during surgery and post surgery to make it through a year.
I'm not familiar with the 0/2 nodes notation. Does that mean cancer had spread to the lymph nodes, or not? If not, do you know why the cancer is graded Stage IIIa? - she had 2- nodes biopsied and 0 nodes were postive (0/2) meaning no node involvement, ok...the MO staged it at IIIa right after PET scan which had some suspicious axillary nodes, the MO did not re-stage after SNB. The tumor was two smaller tumors and a vast region in the right quadrant which felt hard and lumpy (she literally finished breastfeeding our 2 yo at the end of july 2014) but no identifiable lump so this area was hard to classify (maybe DCIS??..no one would say)so based on that info 6+cm and suspicious node in the PET scan = stage IIIa.
I found the TCHP protocol definition, but none for BMX. What does that stand for? - BMX (bilateral mastectomy) ...
How many months of chemo are planned? 6 rounds for us, with one full year of herceptin..my wife got a port as she will be getting herceptin infusions for one full year, also she gets nupogen shots (10 of them in her belly that I have to give) after each chemo treatment, our insurance does not cover neulasta which is one shot you might get the day after chemo. The nupogen and neulasta are white blood cell promoters. We got a second opinion from an MO that was very reassuring as it was identical to the first opinion. Also my wife is not hormone positive so that is a difference.
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larod 825 -- Thanks so much for this. Very helpful to hear about possible road ahead, and to have terms explained. Best to you and your wife.
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My timeline went fast...Biopsy on 6/9/11, results the following Monday, 6/13/11, meeting with the oncologist on 6/14/11 where we discussed the possible treatment options pending the results of the tests on receptors and her 2 neu, results and another meeting with MO on 6/21/11, with chemo starting on 6/22/11. Yeah, for me it went fast. Of course I didn't have surgery until 11/23/11-after I had completed the Taxotere and the Carboplatin; I continued the Herceptin until May of 2012.
Everyone's timeline is going to be different for many different reasons. It was nine days before they had all the information they needed to start my treatment. Those nine days seemed like a lifetime to me when I was waiting. In retrospect they really didn't mess around with me-they started everything pretty much the minute they had the information they needed to start the correct treatment for me.
I had a complete pathological response and all scans since have been negative. Good to hear there are other options since everyone doesn't respond to herceptin.
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Hello: Just wanted to share my timeline
Feb 26, 2015 (Thu) - Went for ultrasound in Beijing. Discovered tumor. Immediately requested and got MRI tumor.
Mar.02, 2015 (Mon), Consult with Physician at Singapore Polyclinic. Got referral to see Breast Cancer Specialist (BCS) at National Cancer Center
Mar. 05, 2015 (Thu), Consult with BCS Dr. A, brought my Ultrasound (2.6 x 1.7 cm) and MRI results (2.6 x 2 x 2 cm)
Mar.09, 2015 (Mon), Mammogram (3.1) + Biopsy (US Core Needle = 6 core samples taken) with Dr. A
Mar. 11, 2015 (Wed), Sent for Bone Scan
Mar. 12, 2015 (Thu), Sent for Chest-X Ray + Ultrasound of Internal Organ (Morning). Given partial results of Biopsy pending Receptor results
Mar. 16. 2015 (Mon), Appointment with Dr. B (due Dr. A has to attend conference in Vienna) to discuss all test results + Treatment Plan. Receptors results: ER/PR - HERS2 +. Treatment Plans given 2 options: Neoadjuvant or Adjuvant. Chose Adjuvant for following reasons (a) Since IDC cancer is grade 3 (very aggressive), did not want to suffer through chemo/targeted for 6 months (having read the negative side effects of Herceptin targeted drug thread from about 1700 members here helped me decide it was not worth it); (b) don't want to suffer through chemo and become immune system weak. I thought after all, surgery is a matter of sooner or later, and I want this aggressive tumor to be taken out of my breast ASAP. Dr. B wasn't pleased my decision but when she saw I was firmed, she respected it .So, surgery was scheduled for next week, Wed. March 25th, 2015 with Dr. A (as she would be back )
Now, for adjuvant Treatment Plan, Dr.B recommended me to have chemo in tandem with targeted treatment, followed by radiation. I asked about going for radiation sans chemo. Dr. B was again displeased. My thought is I would like radiation therapy followed by targeted treatment using Perjeta and NOT Hercetin. Based on feedback from members here, Perjeta seemed effective. Tykerb is another drug that is used to treat HER2 +. However, since actual Treatment Plan is based on results during surgery, I have to wait and see.
Also explained to me that during surgery, 1-3 lymph nodes will be taken out to test for cancer. If negative, this part of procedure will stop, and Drs will focus on taking out tumor with 1 cm all over margin around tumor for further analysis. Incidentally, those negative 1-3 lymp nodes will also be taken for further analysis to ensure absence of cancer.
However, was told that if lymp nodes test positive, then the entire lymph nodes (LN) will be taken out. Since LN captures all toxins away from the heart, Dr B explained that a cathador (?) will be inserted to catch the fluid which has to be drained several times a day for about 1 week plus. Then it will be taken out and that incision stitch (or something like that).
Was sent to advising nurse who informed me that should anxillary LN occurs, my right hand can never carry anything heavy, or be used to extract blood, insert liquid for IV etc forever. In other words, one has to make sure that in future Dr visits, one must ensure nothing is done to it or it will result in swelling and blood can be cut off that can be quite uncomfortable. I have yet to read up more on this later. Hopefully, during surgery it would be negative.
Mar. 17, Blood Test + ECG + Consultation with Anaesthetist + Consultation w/Dr about pre-surgery procedure
Mar. 25th, 2015 - Surgery scheduled.
These are my situations thus far. I wanted to share this with you because I am amazed at the speed with which this is being done in Singapore without delay...and being someone who has no medical history over the past 50 + years, no family history of this issue, it came as a traumatic shock to me. Every now and then, I cry, mostly because of the kind words from a few of my friends, and nurses at the hospital. Like everyone else here, my world is totally shattered, but I realize I have to pick up the pieces and channel my energy elsewhere. I was so looking forward to taking my Ph.D and being with my teenage daughter who was not at my side for the last 9 years. This is now not going to happen. I promise myself that when I get over this, I will see what area of cancer research I can do... I also want to say this site is an extremely informative source for me, and I thank everyone for sharing your experiences that help novice cancer patients....I am very much obliged, and I wish everybody well in whatever stage of cancer treatment you are going through. I wish you strength, and your fighting to survive has given me strength as well. Thank you again.
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