How long after diagnosis did you have to wait for treatment?

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Blueorange
Blueorange Member Posts: 76
edited July 2016 in Just Diagnosed

I was diagnosed on 5/23 and still haven't spoken to an oncologist or..I don't even know what's next. Why does it take so long to be seen?

How long did you have to wait?

Thanks

«1

Comments

  • Carlsoda
    Carlsoda Member Posts: 249
    edited June 2016

    I would get in touch with your dr., I was diagnosed on 4/26 and had surgery 5/04, and met with my medical oncologist and radiation oncologist 2 weeks after surgery. We are just waiting for the oncotype test to come back before I start treatment. You should at least have an appt with your surgeon. Good luck and big hugs!

  • wrenn
    wrenn Member Posts: 2,707
    edited June 2016

    Lump found June 15th, surgery August 16th, chemo Nov. 25th so 5 months

  • Kicks
    Kicks Member Posts: 4,131
    edited June 2016

    It varies depending on many 'things' - type (DCIS, IDC, ILC, IBC) is but one consideration.

    For me, it was 17 days. Time frame - new mammo, US and biopsies done on Thurs afternoon, had path. report at 8 next morning (IBC), saw Surgeon on Mon, Rads Dr on Wed, saw Chemo Dr Seuss n Thurs. Next week had Bone Scan, MRI and CT (both with contrast), PET Scan, biopsy on an area that 'lit up' along lower jaw (nothing there), port implant and then 17 days after DX started neoadjuvant Chemo.

    You didn't say what type (or suspected Stage) or your ER/PR and HER 2 status as these come into play as to time frame.

    Do be sure to meet with your entire Team before you jump into TX as it takes the Team working together for your best outcome. Depending on what your DX is, surgery is not always the best option (or even an option) first. For IBC, neoadjuvant Chemo (pre-surgery Chemo) is the standard, it is becoming more common for other types also.

    Remember - while the Surgeon, the Chemo Dr (MO/Medical Oncologkst) and Rad Dr (RO/Radiation Oncologist). Each does have knowledge about all the different aspects of TXing BC, they are Specialists in their own field be it surgery, chemo, or rads.

  • jenn32214
    jenn32214 Member Posts: 89
    edited June 2016

    I had a fairly circuitous path, after a diagnostic mammo showed microcalcs in each breast at the beginning of March. The biopsy of right breast came back benign, but left breast was IDC. Then BS wanted an breast MRI, due to my having dense breasts and some family history of cancer. That showed another small mass, and so another biopsy which luckily was also benign.

    So finally had my lumpectomy and SNB this past Thursday. Mine may be an usual case, and I agree by now you should at least have an appointment with a BS scheduled.

  • Reckless
    Reckless Member Posts: 112
    edited June 2016

    I got diagnosed on 3/4 and had my surgery on 4/19. I could have had the surgery sooner, but I took time deciding between lumpectomy/UMX/BMX and getting second opinions. But I find it strange that you do not know the next steps. Didn't the doctor who diagnosed you explained possible options and referred you accordingly? I was diagnosed by oncologist. When I came in, she gave me the diagnosis and discussed next steps/ treatment options. She referred me to the surgeon, as surgery was the next step in my case.

  • patty101014
    patty101014 Member Posts: 53
    edited June 2016

    About 3.5 weeks. I had neoadjuvant Chemotherapy. My diagnosis was October 10 and my first chemo was November 5th. I met with a surgeon first but he and the Med Onc wanted chemo first. The initial waiting for a plan to be established is so hard. Hugs to you

  • TennisPink
    TennisPink Member Posts: 22
    edited June 2016

    Blue orange -- do not panic. Not everyone meets with their oncologist immediately -- most often with an 'early' stage ER/PR cancer you meet with the breast surgeon first since the surgery gives you the key information for the treatment plan. As someone mentioned above, in some instances you would need chemo or other treatments before surgery in which case, yes-- you would need the MO first. I have a friend who required chemo first to shrink her HER2 ++ tumors down, so it all depends on what they have in your path report.

    I was at a cancer center that does not have you meet the entire team at once. It's fine -- I met them in order of their roles. Did they at least give you a date with a breast surgeon?? I got that right after they called me with the biopsy report so I am surprised they didn't set you up with one!!

    I was diagnosed on March 1st and did not have surgery until May 4th. Like Jenn, I had a circuitous path with some extra things they found in the MRI and I was on the fence about lumpectomy vs mastectomy, so everything took a bit longer. Most of the other women I met who were ER/PR grade 1 or 2, stage 1 had surgery within 4-6 weeks of DX.

    I met with mybreast surgeon 8 days after diagnosis and she went over the 'possible' treatments but I never spoke to or met my oncologist until late May. However, he had been part of my 'team' all along. He knew everything from the beginning of my DX, we just had nothing to meet about until post-surgery.

    Hugs to you...


  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2016

    A breast surgeon is your next step. Your oncologist appointment comes after your surgery because he/she determines your treatment.

    Is the facility supposed to find a BS for you? Mine didn't. Same with my oncologist. Friends recommended my BS and the BS' office recommended my oncologist.

    diane

  • grammakathy
    grammakathy Member Posts: 407
    edited June 2016

    Surgery was one month from diagnosis. MO followed six weeks after that and the Oncotype DX was ordered.

  • Blueorange
    Blueorange Member Posts: 76
    edited June 2016

    Thank you for the responses! The waiting with nothing scheduled is pretty rough. I did meet with a breast specialist even before my biopsy, then she gave me my results. I live in a rural area and the hospital doesn't have the greatest reputation. I asked to be referred to UCLA or UCSF cancer centers. Waiting for all of the referrals to be processed....it just seems to be taking a while. But from reading your posts that seems pretty common.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited June 2016

    Blueorange - Let's see.... back in 2011

    August 30th - bleeding from left nipple

    August 31st - saw Primary Care doc

    September 2 - Met with Breast Surgeon for consult

    September 8th - diagnostic mammogram, ultrasound, and ductogram

    September 12th - ultrasound-assisted core needle biopsy

    September 15th - Radiologist called with diagnosis of breast cancer

    SO - in 3 weeks I'd seen two docs, had four tests, and gotten a diagnosis.

    In the next two weeks, I had three more diagnostic tests.

    October 4 - Met with Breast Surgeon and Nurse Navigator to discuss options. Chose Bilateral Mastectomy with Reconstruction.

    October 10 - Met with Plastic Surgeon to discuss Reconstruction

    October 20 - Had Pre-Op for October 31st surgery, which, thankfully, was cancelled. Didn't want staff in Halloween costumes.

    November 8 - Surgery rescheduled, had to cancel - I had the flu.

    December 5 - FINALLY got my BMX and recon.

    December 30 - First meeting with Oncologist. She wanted to make sure she had the Final Pathology report first.

    So you can see that in the beginning, things moved quickly. (Thanks, Kaiser.) But once I had to miss my first two surgery dates, I could swear I could feel the cancer just growing inside me like a balloon blowing up. (The nurse explained that it wasnt.) I had my surgery three months after diagnosis. Saw my Oncologist nearly four months after diagnosis. Started my treatment (Aromatase Inhibitors) almost a year after diagnosis.

    You can see how different we all are. Some of that has to do with access to health care, but lots of it has to do with the type and size of your tumor(s). Mine were early and small, and waiting - according to the surgeon - was no big deal. Well, at least for HER. But it is not uncommon.

    Wishing you the best!

  • PawsitiveEnergy
    PawsitiveEnergy Member Posts: 3
    edited June 2016

    I was diagnosed on 3/22/16. My chemo started on 4/25/16. Prior to that, I had met with a panel of doctors (surgeon, oncologist, & radiation oncologist) Had to have MRI, Echocardiogram and PET CT scan before chemo could start.

  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Blueorange....IMO waiting is not a problem but where you are treated is very important. I would do whatever you can to be treated at a major university teaching hospital. I was diagnosed in March and had surgery in May. I also did not see an oncologist until after my surgery. Unless your tumor is very large and they are considering chemo before surgery it is not necessary. Good luck and keep us posted....

  • Blueorange
    Blueorange Member Posts: 76
    edited June 2016

    dtad,

    I agree with having surgery and treatment at the right place. I am waiting for response from UCSF. I wish the waiting was easier, but for me it's excruciating. Thank you for your response I'm glad i chose UCSF

  • Blueorange
    Blueorange Member Posts: 76
    edited June 2016

    it's amazing how different the waiting periods are for everybody! Thank you for sharing

  • kenyon
    kenyon Member Posts: 5
    edited June 2016

    One point I would make is that your are your own best advocate. I was recently referred for stereotactic bx due to mricrocalc in left breast and made the decision to transfer my care to a well respected cancer center that has an affiliation with MGH. It fell upon me to direct my own transfer of care - obtaining films and reports, calling the imaging center that would be doing the bx to find out protocol to schedule the bx, calling the BS of my choice for a consultation. Once I saw the BS who made the referral of bx, I felt that after several days I should have received notice of my scheduled date for the bx. I took it upon myself to call the BS who advised me to call the imaging center to find out status of scheduling. I discovered that the x-ray dept. that had done the diagnostic mammo had failed to provide a complete set of films, therefore, the delay in scheduling. My point in relating this to you is that, if you feel things are not moving fast enough you will find that you will receive status updates if you call. I would call the cancer center to which you are being referred to ensure that they have a complete set of records from the referring physician and get reassurance that you will be contacted soon with an appointment. My bx was positive for presumed DCIS, and my BS discussed with me the next steps to take. I feel comfortable with the further diagnostics he has recommended and do not want to rush into a treatment protocol until we know as much as possible through further diagnostics. I think approaching it this way offers the best possible outcome. Receiving a dx of BC is a frightening and confusing experience. We are all supporting you and wish you the best.

  • kenyon
    kenyon Member Posts: 5
    edited June 2016

    One point I would make is that your are your own best advocate. I was recently referred for stereotactic bx due to mricrocalc in left breast and made the decision to transfer my care to a well respected cancer center that has an affiliation with MGH. It fell upon me to direct my own transfer of care - obtaining films and reports, calling the imaging center that would be doing the bx to find out protocol to schedule the bx, calling the BS of my choice for a consultation. Once I saw the BS who made the referral of bx, I felt that after several days I should have received notice of my scheduled date for the bx. I took it upon myself to call the BS who advised me to call the imaging center to find out status of scheduling. I discovered that the x-ray dept. that had done the diagnostic mammo had failed to provide a complete set of films, therefore, the delay in scheduling. My point in relating this to you is that, if you feel things are not moving fast enough you will find that you will receive status updates if you call. I would call the cancer center to which you are being referred to ensure that they have a complete set of records from the referring physician and get reassurance that you will be contacted soon with an appointment. My bx was positive for presumed DCIS, and my BS discussed with me the next steps to take. I feel comfortable with the further diagnostics he has recommended and do not want to rush into a treatment protocol until we know as much as possible through further diagnostics. I think approaching it this way offers the best possible outcome. Receiving a dx of BC is a frightening and confusing experience. We are all supporting you and wish you the best.

  • Clauclau
    Clauclau Member Posts: 88
    edited June 2016

    I was diagnosed with Triple Negative mammary carcinoma Stage 2, grade 3 , 2.5 cm, on 5/12/16 and I was referred from the gynecologist to a BS on 6/9. My first thought was that I would have to wait to hear what the experienced doctor had to say about it. Well, blame it on my personality ( or maybe I was numbed by the news of having BC) , but I wasn't antsy to know more details about the cancer. When I talked about the results of my biopsy to my husband, sister and close friend, they were all unanimous to say " look for ANY oncologist to explain what this cancer means on you". Without knowing exactly what to say, I called Scripps ( my network) and requested a visit with any oncologist that could translate to me the pathology test. I was also curious about what steps to take first to start treatment.

    I am glad I listed to my family and friend. I was first put in contact with the Radiologist Oncologist ( I don't know at this point if I will need radiology treatment after the surgery), but he was, by far, the best teacher in cancer subject that I could ever had asked for The man sat down with me and my husband and patiently started making drawings of cells, existing cancer types, stages, grades, treatments and surgery options for the type of cancer I got. He also ordered a MRI, a PET scan, a Bone scan, and made a referral to the genetic counseling to expedite the process involved. He finally told me that I would need to find an oncologist and a surgeon to be part of the team. I walked out of his office very confident that I would have a successful outcome.

    By the time I met with the breast surgeon on 6/9/16, I was equipped with the most valuable thing I could have to make good choices: INFORMATION!

    I learned that there are lots of choices when it comes to dealing with cancer. Some cancers type will allow you to have more choices that the ones I had with triple negative. In my case , I was given the choice of chemo + surgery or surgery + chemo. When I met THAT first surgeon on 6/9/16, she wanted me to have the surgery first and then chemo, but she didn't listen to me. I was going towards chemo as a neoadjuvant treatment first, and she totally disregarded what I had to say about the situation. I didn't have a good feeling about her practice and I got another surgeon for 2nd opinion. Needless to say she will not be my surgeon....

    I am now happy with my doctors and the treatment plan choices that we decided together. There is one more doctor to add to my team, and I will meet him tomorrow I was told I need to have a plastic surgeon for my breast reconstruction working with the breast surgeon. I am leaning towards DBLMX followed immediately by reconstruction.

    I guess my advice to you is that you don't have to WAIT between diagnosis and treatment. Don't wait to get informed about your situation, and get as much information as you can. Be ready to understand what it is happening to you and your body, and take control of the situation. The doctors will help you to make the best choices for you and for your lifestyle, but you need to feel comfortable with the choices .

    The thought of having cancer is very scary at first, but keep in mind you are not alone and there are several people out there going through similar situation at this moment. I am impressed with the amount of information and support out there, from great stories of survival, encouragement and resilience...

    Don't forget to think positive and believe that you will get through it.

    Good luck to you, to me and to all of us.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    Let’s see:

    8/16, late aft.--routine annual screening mammo;

    8/17, early morning--message in my patient portal inbox about anomaly, urging me to get diagnostic spot compression mammo & ultrasound; phone call that aft. from the breast center to set up appt.

    8/24 (first appt. I could get)--diagnostic mammo & ultrasound, biopsy recommended--couldn’t have it right then bec. I needed to be off all my aspirin, fish oil, etc. for at least 3 days, and was leaving for conference & shows in New Orleans & Pittsburgh the next day, followed by a local folk festival Labor Day weekend, so scheduled biopsy for 9/8. (The venue in Pittsburgh double-booked the date and I stayed on the road an extra week for nothing--could’ve flown straight home from New Orleans and had the biopsy a week sooner).

    9/8, early morning--biopsy

    9/9, evening--GYN’s partner called w/dx (IDC, Grade 2)

    9/10, morning--GYN, back from vacay, called w/more complete results, incl. hormone & HER2 status, suggested I call a BS and gave me 2 names, both partners; called and got 1st appt. I could w/one of them

    9/14, midday--met w/BS, who preliminarily staged me, laid out my options; we decided on lx+rads. Said to call her sec’y in morning to get surgery date

    9/15--called, to find her first date wasn’t till 10/9. Said I’d never be done with rads &/or chemo in time to take the Med. cruise (nonrefundable) DH & I had booked after his own surgical scare that summer. She called back and announced surgeon had traded dates and could get me in 9/23.

    9/17--“Patient teaching session” w/ BS’ NP, who also scheduled BS followup & first MO appt for 10/1.

    9/23--surg. & SNB

    9/28--surg. path report confirmed stage IA

    10/1--MO met w/me and ordered genetic counseling & OncoDX

    10/8--genetic counseling & testing

    10/10--OncoDX results

    10/12--genetic test results

    10/14--first RO appt; SNB seroma burst 10/16 & was sutured;

    10/21--RO CT & planning

    10/29--RO sim, DexaScan; sutures out 10/30

    11/2-23--rads.

    12/31--started letrozole. (Would’ve been sooner but for the cruise).

    So from initial mammo to diagnosis was 4 wks; diagnosis to surgery was 2 weeks, and surgery to rads about 6 wks. From initial mammo to end of rads, a bit over 3 mos. Amazing, since some folks need to wait that long from dx to surgery! (My friend in the s. ‘burbs got her initial dx in Jan. and due to various imaging snafus and having to go to a better hospital, didn’t get her surgery till late April)! I was lucky--no PET scans or MRIs and the sole CT was non-contrast, for mapping. And I was at a major teaching hospital with a dedicated breast clinic and freestanding cancer center.



  • Trvler
    Trvler Member Posts: 3,159
    edited June 2016

    If there is anything I have learned throughout this whole process, it is that you have to be your own advocate. Be the squeaky wheel. Don't be shy about it.

    It took me from 1/19 to 3/24 to start treatment but I saw a BS the very day I got my diagnosis. I think they knew when they biopsied me because they told me to make an appointment when they did it.

    I sought second and third opinions and for me the hardest part was having medical records transferred from one place to another. I got a lot of flak from different places and the bureaucracy was a nightmare. You really learn a lot about human beings when you are asking them to help you and they give you grief and red tape.


  • FeMichelle
    FeMichelle Member Posts: 10
    edited June 2016

    Thank you Tvler for posting your comment it really helped me out.

    I was diagnosed June 6, 2016 I've met with the surgeon, who advised me of my options lumpectomy with radiation therapy or a mastectomy. I finally made a choice of mastectomy yesterday after 2 weeks of trying to really grasp whatttttttt is really happening to me.

    I feel like a deer caught in the headlights.

    The surgical staff set me up with my Breast Care Coordinator '

    I'm still CLUELESS of what's next!

  • joseywales
    joseywales Member Posts: 1
    edited June 2016

    You should not have to wait for appointments all over town. And the sooner the tumor is removed, the better off you are. See if there is a Women's Wellness Center in your area. The centers handle all aspects of diagnosis, diagnostic testing, biopsies, surgical referrals, etc... and all of your information is in one place for all to view. I went for a routine mammography exactly 1 year and 1 day from the previous year. This was #25... they came out and said it looked different and they wanted to do a "diagnostic mammogram" ... this was about 11AM... at 1PM I had an "ultrasaound". By 2PM the head radiologist spoke to me. I was assigned a "RN Navigator" to help me through the whole process, set appointments, answer questions, etc... at no charge. I had an appointment at 3PM with the surgeon. This was all done on the same day, Thursday July 9, 2015. A biopsy was scheduled for Monday July 13th. at 10AM. On Tuesday evening the surgeon called me with the results of the biopsy. It was Stage 1 IDC. His office had the Team call me on Wednesday and on the next Tuesday I met with a Social Worker, No Charge - A Genetic doctor, a Radiologist/Oncologist and a Medical Oncologist. Later that same day... the surgeon had ordered an MRI of both breasts. The following week, after the surgeon meets with the team, and discusses the best treatment... by the way, they each examined me separately... in other words... they each have their own assessment and they compare their findings along with the surgeon to find the best treatment. I had an appointment with my internist coincidentally the very next day. He agreed that the tumor should be removed ASAP.The following Tuesday July 21st... met with the surgeon again. He advised me that I needed a lumpectomy and a sentinel lymph node biopsy followed by 33 rounds of radiation for sure. A sample of the tumor is taken during the surgery and sent for the OncoType testing... that result would determine if I needed chemo. as well. On Thursday the 23rd I had a preop at the hospital... on Monday July 27th I was seen at 7AM by the radiologist to implant markers... and then admitted as an out-patient for the surgery. The surgery was at noon... I woke up in the recovery room at about 3:30 and was released about 5PM. So I was diagnosed on July 9th and had the surgery on Monday July 27th... the morning of July 29th by 10AM the surgeon had called. It was my birthday! I got a great present... the lymph nodes were negative. On August 10th I was told by the oncologist that my OncoType Score was 17... that I did not need chemo. The actual cutoff is 18... so I just made it, however they also take into consideration the type of tumor and age. I was Stage 1A, 100% estrogen positive & 90% progesterone positive, HER2 positive. I just turned 64. I started radiology on August 25th... never missed a day... and was done the beginning of October. I started hormonal therapy October 21st... and see the doctors on a planned basis.

    YOU SHOULD NOT HAVE TO WAIT... TAKE MATTERS INTO YOUR OWN HANDS AND FIND THE BEST POSSIBLE WOMEN'S CENTER WHERE EVERYTHING IS COORDINATED IN 1 OR 2 BUILDINGS AND THE DOCTORS WORK TOGETHER AND YOUR MEDIAL RECORDS ARE EASILY ACCESSIBLE TO ALL.

    I don't know where you live... I hope you an seek out a medical facility nearby. I use the Women's Wellness Center, the Lynn Cancer Institute and Boca Ration Regional Hospital in Boca Raton, Florida. They are highly rated in the top 5 centers in the southeast.

    I hope this outlines what course you'll be navigating. If you need further info... I'll watch for your message .By the way, just so you do not worry, nothing really was painful... and the surgery recovery was very minimal. Nothing interfered with my daily routine after the first day or two! Good Luck and God Bless.


  • Trvler
    Trvler Member Posts: 3,159
    edited June 2016

    I don't always think sooner is better. I was so happy I sought more opinions. I didn't agree at all with the original BS and I would have had a lx and then probably back into the OR to have a BMX once they discovered more cancer in the original breast. That's assuming they even found it at all.

    I am curious why you decided to go for the mx? Your tumor is very small and you are hormone positive so you will be getting hormone blockers?

  • FeMichelle
    FeMichelle Member Posts: 10
    edited June 2016

    My reason for the Mastectomy was listening to family members tell me, I should just have the breast removed to guarantee my chances of not returning.

    I'm so confused with no real help

  • Trvler
    Trvler Member Posts: 3,159
    edited June 2016

    Have you spent any time on here reading about the pros and cons of each surgery? There is a whole thing about it. If you want the link, send me a PM.

  • Trvler
    Trvler Member Posts: 3,159
    edited June 2016

    I think it is worth posting, don't let ANYONE else make a decision regarding what to do with your body. What is your doctor recommending?

  • Sam2U
    Sam2U Member Posts: 233
    edited June 2016

    What Trvler said!! Don't let anyone make the decisions for you. Take the time to research and decide what is best for you.

    It took 3 months from diagnosis to surgery for me, and looking back I wish I had taken longer to get more information.

  • FeMichelle
    FeMichelle Member Posts: 10
    edited June 2016
  • Acie
    Acie Member Posts: 57
    edited June 2016

    I was diagnosed June 9, 2016. I saw my surgeon and my oncologist on the 15th. I had surgery to put my chemo port in on June 20. Bone and CT scans on June 21. I see the onc again tomorrow (June 22) and get an echo cardiogram too. The plan is to start chemo June 28th. Feels very fast, but all the doctors seem to agree on this protocol. I am also glad to not be sitting around waiting and worrying.

  • Trvler
    Trvler Member Posts: 3,159
    edited June 2016

    Michelle: We are here to help you. Please ask any questions. I sent you the link of pros/cons of both surgeries.

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