What was time between diagnosis and treatment?

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resigned
resigned Member Posts: 36
edited November 2014 in Stage III Breast Cancer

i've been reading a lot this morning, trying to figure out when most of you with stage 3 started treatment after diagnosis. My doctors are all using big scare tactics on me, trying to convince me that I've waited too long. Well this is my body and I wanted to explore all my options! I'm not sorry for that but now my family is freaking out and asking why it's is taking so long. I've tried to explain that i couldn't get in see the second plastic surgeon until late this month, I didn't like the first one. I changed my oncologist too, twice because I didn't like the way they treated me like a statistic. I also had to find doctors who would work with my naturopathic doctors. I wasn't even sure I was going to do the chemo I would think my family would be relieved since they were all pushing me. So over 4 months have passed since my diagnosis and I don't have a surgery date but I think it'll be soon after my appointment with the plastic surgeon and then chemo. how much time passed between your diagnosis and your surgery/chemo? Is 4 months a lot for stage 3?

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  • kar123
    kar123 Member Posts: 273
    edited October 2014

    3 weeks from diagnosis to chemo for me.  I would listen to what the doctors are saying.  I don't think any of us can tell you if you waited too long.  I would think it would depend on the grade of your cancer and if it involves nodes or not.  I know if it were me, I wouldn't be waiting on a plastic surgeon.

  • resigned
    resigned Member Posts: 36
    edited October 2014

    3 nodes tested positive for me, grade 2. Looks like we have similar stats. Why did you do chemo before your surgery? They wanted to do that to me too. my first oncologist wanted me to do chemo right away. I didn't trust him with my health because he refused to work with my holistic doctors. Now i feel good about the team i have around me and i'm ready to move forward. I'm just nervous that it took too long. Do you mind telling me why you decided to do radiation? i know every body's case is different but I'm going to refuse radiation for now. I'm er/pr negative if that makes a difference.

  • dltnhm
    dltnhm Member Posts: 873
    edited October 2014

    Here's my history: Diagnosis - 11/23/11 (This was not a stage III diagnosis - as there had been no surgery and what was seen and biopsied at that point did not point to stage III - True diagnosis comes in after final pathology.) Unilateral Mastectomy/Immediate DIEP Reconstruction - 1/10/12 (just under 7 weeks)  If you look at my signature you can see the dates for my different chemos, radiation, and start of tamoxifen. That's my history. We are different even with the same stage.

    I looked back at your earlier posts and see that you were initially diagnosed in June, had further testing and you have a 4 cm tumor, grade 2, triple negative, with 3 of 9 nodes testing positive.

    I didn't see your age in the posting, but understand that the younger a person is, the  more aggressive the cancer is. If that's a factor for you, it's another point to consider.

    And triple negative has fewer options than hormone positive cancer. The latter may be another reason why you have been encouraged to hit this fast and hard. And coupled with the your positive nodes, there is certainly a reason your doctors want you to get started.

    You can only look forward at this point and not back - but I would encourage you to not wait longer. Since you will be having surgery first, generally a patient has to wait some time between surgery and chemo. So delays in surgery push back your chemo. At some point, you have to trust that there is someone in the conventional medical community that is looking out for your best interests if you are choosing to go that route as well. 

    I'm sorry that you are going through all of this. 

  • resigned
    resigned Member Posts: 36
    edited October 2014

    I'm almost 52. I think you're right, i can only look forward. Thanks for sharing all that info. I'm just really tired of every body in my life giving me a hard time for getting my first mammogram this year. It wasn't like i forgot! I consciously made a choice not to expose myself to radiation. Now every body has this "I told you so' attitude with me even if they don't say that exactly i know that's what their thinking. Other than a few friends and my holisitic doctors I feel undermined. 

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2014

    The Stage is only part of the DX.  The type being dealt with is VERY important when it comes to TX plan and time frame can wait.

    Neoadjuvant chemo (chemo before surgery) is SOP for IBC and becoming more common at tiems for others.  The reason to do neoadjuvant chemo is to get the cancer to form better, get better margins and shrink for better surgical outcomes.

    The longer you wait - the more it can/will spread - metastasize.  

    Your question - how long between DX and starting TX.  For me, it was 17 days between DX and starting neoadjuvant A/C.  But then I'm not IDC.

  • kar123
    kar123 Member Posts: 273
    edited October 2014

    I was advised to have chemo before because my tumor was very large and they wanted to shrink it so I would have a better surgical outcome when it came to margins.  Since it was in my nodes, chemo was a no brainer for me because it's a systemic treatment and would hopefully catch any stray cells that could have escaped the nodes.  I chose radiation because I wanted to be sure that, even though I had clear margins, any residual cancer in the local breast and axillary area would be taken care of.  I have two children and was 40 at diagnosis so I wanted to throw everything in my doctor's arsenal at it. For me it was just knowing I did everything I could so if it does recur, I wouldn't be thinking if I had just done x,y,z, I wouldn't be in this predicament.   Plus, I trusted that my doctors were recommending treatments that were in my best interest.  It's a very personal  decision.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited October 2014

    I was diagnosed on June 11th.  Had my lumpectomy on June 24th and started chemo 4 weeks later.

    Nancy

  • Holeinone
    Holeinone Member Posts: 2,478
    edited October 2014

    Natural, 

    I think the posts so far has been right on target. I was dx in mid July, had a lumpectomy, a week later a port out in my chest, a month later started chemo. I still get irritated that they did to start chemo sooner. But, we cannot look back. 

    Even with conventional treatment, you control your diet & exercise. 

    For me waiting for surgery is worst then surgery itself. If you can have a lumpectomy, you do need need a plastic surgeon. It is way easier than a mastectomy. Lots of women have no choice, but my breast surgeon recommended it, I am a little smaller looking in that side, but I could care less about that. I am also 25 lbs lighter. That's a plus. 

  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2014


    I was dx'd in October, Surgery in November...but didn't start chemo until Feb. I was dealing with complications from infection and it delayed my chemo. I was VERY worried about the delay and wanted to get things going asap. I also had rads after chemo. I was 39 at dx and wanted to throw everything at it. Good luck ((hugs))

  • resigned
    resigned Member Posts: 36
    edited October 2014

    Well it's what my doctors have been telling me, looks like all of you started treatment pretty much right away. Thanks for letting me know. I guess some people could say I'm being selfish for taking these past four months to look at the alternative route first. My mother won't stop implying how selfish I'm being. She says if I really loved my daughter I'd have done the surgery and chemo in July like the first oncologist wanted. I just didn't want to be pressured into something that i don't believe in. I don't automatically view these doctors as gods with all the answers. I know my body better than they do and i believe in natural treatments. But now that i've agreed to surgery and chemo I guess it's time. I appreciate all the feedback. 

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited October 2014

    Dear naturalhealing,

    For what it's worth, I think you are doing the right thing to kick off your treatment now even if you don't have the answer to every question.  I got treatment in a matter of days, but probably didn't have to.  However, four months is getting to be on the long side.  Good for you for proceeding. 

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2014

    Drs are NOT "Gods with all the answers".  They are educated though in their speciality which means they know more than we do.  No one wants to have to deal with any health issues but the longer that nothing is done, no matter what the cause, the more advanced it becomes and thus harder to treat/get good response.  The longer left with no TX the more it can spread.

    If you haven't had surgery yet, the Stage is not determined.

    What you choose to do is up to you.  It is persoanl to aggreessively attack, do nothing and everything between.  'You' have to do what you believe is the best for you AND your loved ones.?

  • angelia50
    angelia50 Member Posts: 381
    edited October 2014

    Naturalheal. I have to admit, I had not had a mammogram in 20 years, I am 58.  I really wanted to beat myself up over this in the beginning but then I began to think, you know what, I would have still had cancer even if I had a mammogram for the last 10 years or whatever.  I mean, my having the mammogram would not have prevented this cancer. Yes, maybe it would have been found earlier or maybe it would not, who knows.  I talked with a lady at a recent appointment while waiting for testing and she had first been diagnosed 12 years ago and she said she had mammograms faithfully every year and still, when hers was found, 1 year after a clean bill of health, it was already stage 3, so it came up that fast.  I am not sure why God choose to have me deal with this but I know he did and it was found when it was meant to be found. So, now all we can do is deal the best we can. Thoughts are with you.

  • new_direction
    new_direction Member Posts: 449
    edited October 2014

    I began neoadjuvant chemo 1 week after diagnosis. I was actually pushing for treatment to begin as fast as possible but we had to wait for scan results before beginning.

    I felt sure about following the suggested treatment plan from the beginning but I understand how things may take some time if you're not completely determined on what to do. What's most important is finding a solution you feel ok with - for me it was just the fastest solution. I actually felt most comfortable with just doing what the doctors recommended because I wasn't able at the time to think rationally at all.

    It's hard to tell if a few months matters. In some cases it may. I believe there are stray cells in most cases and maybe it all comes down to how well you respond to the systemic treatments no matter when you begin.

    Good luck with everything.

  • Momine
    Momine Member Posts: 7,859
    edited October 2014

    Got initial DX (MRI result) on June 2 (2011). First doc scheduled mastectomy for June 6, four days later, but I went for a second opinion instead.

    June 8-9: extensive testing and biopsy performed.

    June 21: First chemo, neo-adjuvant.

  • Bippy625
    Bippy625 Member Posts: 890
    edited October 2014

    hi all, just wanted to say mammos are not necessarily the wonderful all knowing oracles that they are promoted to be. In my case I have very dense breasts and the mammogram picked up nothing. I faithfully gotten mammograms ever since in my mid 30s. Even the mammogram that I did the morning I got diagnosed showed nothing, and I have multiple tumors in that particular breast. So I wonder if all those mammograms maybe contributed to my disease!  Only an ultrasound picked it up. I'm angry because even though my breasts are very dense no one ever recommended a 3-D mammogram to me, which I am told may have picked it up sooner. 

    Anyway I started chemo seven days after my biopsy/diagnosis, due to the aggressive nature of HER, and lymph node involvement.  

  • Momof2inME
    Momof2inME Member Posts: 683
    edited October 2014

    Dx'd 11/30/11

    BMX 12/21/11

    Started chemo 19 days after BMX

  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited October 2014

    Diagnosed June 2010

    Unilateral mastectomy July 2010

    Chemo August 2010

    Radiation Feb 2011

    I would have been terrified to wait months for treatment.  However, I had a huge tumor which must have been present for years and years prior to diagnosis.  Most likely some tumors metastasize very early, some late and some never.  I'm hoping I'm in the last catagory.  Please don't be afraid of treatment.  It's miserable but doable and beats the alternative.

  • resigned
    resigned Member Posts: 36
    edited October 2014

    Thanks to everyone who posted there timeline. I guess I'm in the minority. Many of you have similar stats to me but started treatment right away. I just felt like the doctors were using scare tactics to rush me into a decision to make it easier to fill their schedule and I really didn't like the first few doctors I met. I'm hoping to schedule surgery in the next several weeks after I meet with my plastic surgeon at the end fo the month. 

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2014

    You might have to have more scans/tests now for the surgeon(s) to know what they now have to deal with as opposed to what they would have had to months ago..  In the months since DX, it has probably advanced so not the same for surgeon to deal with 'tomorrow' that it was 4+ months ago.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    Natural:  There is an article in the bc.org news that may give some helpful information to you, although, I found the article somewhat confusing in their "stats".  I was like Bippy -- whose cancer was not detected by mammo because of dense tissue, & only confirmed by ultrasound and even then, the docs were only talking about a 1 or 2 cm tumor.  Bilat mastectomy happened almost 7 weeks after dx.  The reason was I was exploring all reconstruction options and fighting with my insurance company to cover prophylactic surgery on the non-cancer breast, which ultimately I won out.  All this took weeks and it is OUR bodies and OUR decision what to do.  Long story short or vice versa, after surgery my tumor was over 6 cm !  Even a pre-surgery MRI did not see the size nor did it see any positive nodes.  If you're like me and your body doesn't tell you if something is wrong, you may want to get tx going right away.  I also had to meet with a geneticist, as I had second-degree relatives that were dx'd with BC at pretty young ages.  But I was 52 at dx.  Hope some of this helps. Stay strong !  

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited October 2014

    Hi there,

    I think all the ladies above hit on some great points.  For me, personally, I wanted it OUT the same day as the dx.  Ha.  I knew that was not going to happen, and I wanted to be treated at Johns Hopkins in Baltimore and had to wait 7 weeks for the surgery.  Frankly I felt that was too long to wait. Unfortunately as a previous poster mentioned you really don't get your TRUE pathology report until AFTER the surgery.  That includes sizing, stage, etc.  They were thinking my primary tumor was around 3-4 cm (I had multifocal disease in one breast), and no site of or palpable nodes.  Ended up primary tumor was over 6.5 cm, and I had 13/15 positive nodes.  Not trying to scare you with my stats, as everyone's body is totally different as is their cancer.  At this point you are probably more confused than ever.  Sometimes too much information is bad information!  Make a choice, stick with it and don't look back. 

    Keep us posted!
    Love,

    Sharon

  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2014

    I first felt it myself I think as early as february, I can't remember exactly, but I thought it was just the usual nothing. Then even a month later, I started getting a little worried.  It took me a few weeks before my appointment for my PCP, who sent me for a mammo, and it was June when it was found. Due to a stupid comedy of consults, didn't decide where i was going to be treated till july. surgery in august, and then had my personal 9/11 in september when chemo started. done with rads by march. My BS said it had been there for 8 years, about right, cause that's when I stopped doing mammo's, cause it was ALWAYS nothing. I knew nothing about BC, so all the awareness stuff did nothing for me. I thinks it's because i went for free mammo's with dated machines, surly techs, disorganization of files, and NO printed matter to find out about dense breasts etc in the waiting room, and I never even thought at that time to ask for copies of the report, i didn't even know you could. stupid. So anyway, a whole YEAR after the last mammo, that place sent me a letter saying "they found something" and could I come in?  Thing is, is that after almost every single mammo, they would send me a mile away for an ultrasound. And that guy? He did an aspiration on my uncancer breast, because it was hot, and red, and swollen. So he performed an ultrasound guided biopsy, and it was kinda cool, because I could see on the monitor, the thing completely deflate, as he took the fluid out. but at the last second, I looked at the syringe. This syringe was about an inch in diameter, and what looked like pus to me, sorry sqeamish ladies, and I asked him, what IS that? As he chucked it into the trash bin. "It's an inflammation" he said. I said are you sure? It looks like an infection to me. And he got pissed and told me again it was an inflammation. OK he's the dr, he knows best, and I got dressed. This is why angelina jolie can have that place, cause that is where he works now. So I think what happened, is when he went to move there, they reviewed the records, and that is when they found that "something". But since I didn't respond (because I thought they were trying to scare me into coming back) they put my file under inactive, and then finally threw them away. Because when it was found, tx place asked for priors, and no one could find them. I guess this wasn't the right place for putting this all down, but once I got started, I couldn't stop. Sorry. 

    What happens is, first you get the clinical staging, which is what happens when they palpate and image, and even the biopsy results.  Then surgery, where you get the pathologic staging. Unless you are found at stage iv before surgery. I had to learn alot about all this, cause no doctors would tell me anything.

  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2014

    Holeinone, really? Your breast surgeon recommended a plastic surgeon for the lumpectomy? How did that work? The BS removed the cancer, and then the plastic surgeon finished up? Or what? I wish mine would've.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited October 2014

    Kathec, opps, I wrote you do need need.....should of said do NOT need a plastic surgeon. But there is a law, that states if you need reconstruction, or plastic surgery on that breast, insurance has to pay. I do not know the specifics, I never looked into it. My insurance did send me a letter on it. I was happy, or OK with what it looks like. Always thought,  if I had had a mastectomy, I would not do recon. But, I certainly realize that you make those decisions when you have too, not speculating about it. 

  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2014

    Do you have a hard huge lump under the scar incision? Does anyone? Like a rock? I do, its huge, and it has been there from surgery. Its really quite bothersome. Butt really what is bothering me most is that I have gained weight since, and the other one is huge, much bigger than cancer side. Sorry, didn't mean to get off topic.

  • resigned
    resigned Member Posts: 36
    edited October 2014

    I'm really afraid of gaining weight after chemo since i've read about that. My doctors say they think I'm going to lose weight. They say because my BMI is 15 that I have to go on steroids during chemo but there's not way I'm going to do that. I'll try other remedies if I need them. Agreeing to put this poison in my body was hard enough, I'm not going to add to it with more poison! I don't think my dcotors are used to treating an endurance athelete like me.

  • ppplocke
    ppplocke Member Posts: 44
    edited October 2014

    You are not being selfish...you are being conscientious.  That being said...I was diagnosed 4 years and 1 month ago with a 1 cm "stage 1" cancer.  I was told to do surgery first then chemo, if it was necessary, later.  Upon surgery we realized (after an MRI and PET scan were all negative) that I had 5 positive nodes and a few tiny tumors in my left breast.  I did a mastectomy in the first round of surgery, which was against all advice (again they thought I had a 1cm no nodes situation).  After my pathology came back I did six rounds of chemo and 36 rounds of radiation.  Four years and one month later I am doing great.  My cancer was highly estrogen fueled thank God.  You have triple negative (not good) plus nodes involved (not good).  I do not think you have really hurt yourself by looking at options but triple negative plus nodes involved mean you need to kick this cancer in its' ass.  NOW.  Those are both prognostically not great things (and recall I had nodes involved so I say this knowing it is hard to say).  If I were you I would get on it as soon as you are really able to do so.  Again, you are NOT selfish...you are taking time to figure out all of your options.  And that is how we all should be.  

  • Holeinone
    Holeinone Member Posts: 2,478
    edited October 2014

    Natural, I am 59, so no spring chick....I am still ( 10 months post chemo ) 25 pounds lighter than the day I was dx. My oncologist wants me to gain weight. I think, sheesh, I am finally close to the weight I gave myself 43 years ago on my drivers license.

    When you are dealing with breast cancer & all the treatments, you will have lots of medical people in your life. I really liked my surgeon, some of the other folks, not so much. It really is not important. It's all about survival. We are not statistics, but a lot of the decisions they make are based on statistics, or standard of care,"protocol".

  • Beatmon
    Beatmon Member Posts: 1,562
    edited October 2014

    Resigned: becareful before refusing all steroids.....they are given to keep you from having a bad reaction to the chemo. Please discuss with both your Docs prior. Best of luck.

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