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Delayed surgery, 8.6cm growing very fast, not sure what to do

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ed111
ed111 Member Posts: 54

In January I felt a tiny mass, went to 2D, it showed nothing.

Beginning of February on my annual checkup I convinced my primary to feel it and send me to 3D. 3D was followed by immediate ultrasound and biopsy on the spot -- 0.7cm IDC. That was February 13. I made an appointment with three weeks wait to the best of the best in cancer treatment institution, after all, it was so small, why worry.

The surgeon asked if I have vacation travel plans, there is no need to rush. But at that point she could already easily locate it and said it's probably around 1.5cm.

Again, I pressed on and insisted on MRI which was done two days later. After a week waiting for results -- 8.6cm. Dr didn't call. Nurse called me to say they will be scheduling mastectomy within 6 weeks. I gasped. Went for a 2nd opinion to another hospital. Surgeon said that yes, MRI looks alarming, but again, they have a schedule and maybe can have me in three weeks. Three is better than six, but still make it two months after detection.

This thing grows exponentially every day. It's almost unreal. Surgeon seems very determined not to rush. Not sure what to do. Absurd situation, given that till now I had to press to detect it, diagnose it and actually look at it with MRI. Now what? In three weeks it will triple. And there are studies that survival correlates directly with size and time of surgery. I thought after they see the size they will do it next day. Run to yet another hospital?

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Comments

  • KBeee
    KBeee Member Posts: 695
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    Is the 8.6 cm IDC or DCIS? If it is IDC andbitvthat large, they sometimes choose to do chemo first to shrink it, and then surgery.

    What is the delay? If they are waiting for a common time for plastic surgeon to be available...a common reason for delays, then tell them that you can do that part later.

    I would get the soonest date on the calendar, after talking with the doctor, and expressing concern over the rapid growth. I would then call a large university medical center and try to get in ASAP. If you get a sooner date, then cancel the local one.... let the local surgeon know you are doing that. They may suddenly find you a sooner date

  • ed111
    ed111 Member Posts: 54
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    It's IDC, they don't discuss chemo, they just have long surgery wait and consider 8.6cm "still an early stage" because nodes are clear. Apparently, we wait till they become not clear. I already told them I don't want reconstruction. These are large centers. I would be much better off going with my local hospital right away and have it done long time ago, but wanted "best". Now stuck with best, waiting, while this is growing. Insurance 2nd opinion exhausted. 8.6cm (now probably more) is not an emergency. Surreal.

  • salamandra
    salamandra Member Posts: 736
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    ed111,

    3 weeks doesn't sound so crazy to me, except what you say about how it's growing. What was the hormone receptor profile of the tumor?

    Can you get an appointment with a medical oncologist ASAP? For such large tumors they often want to do chemo first, and that's not the call of the surgeon.

  • ed111
    ed111 Member Posts: 54
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    Scheduling MO now. HER2 positive grade 3, but still considered stage 1 cause clear nodes. I know that nodes are not everything, it may as well go directly to muscles and bones, and no one is looking into that, they say ct scan is not needed. Going on vit C infusions today.

  • Beatmon
    Beatmon Member Posts: 617
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    Your med onc. Will hopefully get things going. You may well have chemo,prior to any surgery due to the size and Her2+. So many times I don’t believe our calls to Dr. office do get passed on to the surgeon...just the office staff that may or may not even know the difference between cm and mm of tumor size.

    Wishing you best of luck. Keep on advocating for your health care and start getting copies/cd of your tests

  • ed111
    ed111 Member Posts: 54
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    Thank you! tis the supporting voices I need. My current surgeon is in direct touch with me, it's just the way things are moving in large centers. Got all the cd's etc, I have been managing my mother's three different cancers over 18 years, so this all is not new to me. It's just that everything was very different back then. She had her first breast surgery within a week, and her followup margins at the same best center within next two weeks. Today you step into Dana, there is not a free chair to sit, packed. 15 min formal meeting with surgeon, not even a followup conversation when 1cm appeared almost 9cm. What if I wouldn't press her for MRI? She would go ahead with planned lumpectomy for "1 cm" in 6 weeks, not even knowing what is there. I met MO in Dana, too, she didn't follow up on MRI 8.6cm results either.

    I'm in much better hands now in different center, but still wait for this size is puzzling. Just the way system works.

  • Flynn
    Flynn Member Posts: 208
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    That’s a big tumor and I understand the sense of urgency as I had one, too.

    I did want to comment that it’s not necessarily growing as fast as you think. I had mammogram then u/s then mri a few days later and a 2nd mri a few days after that. They all came in at sizes. The mri’s we’re somewhat close but u/s & mammo we’re reporting a far smaller tumor size. Diagnostic tests are just not perfect. My tumor didn’t double in size in less than 2 weeks, it was just picked up differently by different imaging. I had dense tissue which is known to be less successfully screened by mammo. I’m not sure what else may have caused the variance. I hope you get everything worked out ok.

  • ed111
    ed111 Member Posts: 54
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    Thank you, Flynn! Unfortunately, it's not just diagnostics diffs and discrepancies, I wouldn't be worrying. I see and feel it's growing, and starting to feel muscles pain and nerve pinches in the back shoulder, which I don't like at all. On top, I have to chase my slides that Dana Farber kept for two weeks for unknown reason, and only after extensive phone calls sent them to where they belong, yet, not with currier as requested, but by regular mail... So another week of delay. Never set a foot in Dana Farber again. Nothing that it used to be 10 years ago. Cold, indifferent, automatic, difficult to navigate, absolutely no individualized approach. 15 min appointment to tell you about protocol. MO not following on tumor appearing 9x times larger than at our initial meeting...

  • KBeee
    KBeee Member Posts: 695
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    Hoping you can get in with another MO soon. I always recommend getting an opinion at a big center as I suggested earlier, but that being said, it is not always your best option, because you are just a number. I went to a large well known Clinic in the midwest when I had my recurrence. They were "sure" it was cells left behind and would not test oncotype because they were certain it was not aggressive. I even offered to pay out of pocket. Surgery was scheduled in about 6 weeks. I saw a new MO closer to home who came highly recommended (but I could not get in with previously) and he ordered oncotype (insurance paid) and it came back highly aggressive. Surgery from local surgeon was moved up to less than 2 weeks once they knew I'd been elsewhere for a consult.


    Keep making phone calls. Keep us posted. Hoping you get in to see an MO very soon. If it is HER2 positive, they often do chemo first, so I am not sure why the surgeon did not send you there.

  • ed111
    ed111 Member Posts: 54
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    I decided to let events run their course. Especially there is nothing I can do at this point. MO is seen only after a surgery and resulting pathology in our corner of the woods, unless surgeon feels they cannot operate without chemo. In my case, they can, so I will see MO after. I went to an integrative health center and started high doze vit C infusions. At the very least, it will boost immune system for surgery. There are growing studies of high level vit C shrinking tumors. I also started intensive juicing protocol, 5 lb carrots+beets+apples+celery per day. Feel great, would be nice if this thing goes away on its own ). All I can do while waiting.


  • Ms_secgo
    Ms_secgo Member Posts: 3
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    ed111,

    I experienced same slow scheduling as you. My thought process is I have cancer GET IT OUT!.

    I will tell u it has been 7 months post op bilateral mastectomy. I was fortunate although it was invasive ductal carcinoma stage 1 a,

    I opted to go complete removal reconstruction. My mother died from breast cancer and after going through multiple biopsies after every mammo enough was enough. Don’t let the size of lesion scare u . It’s not necessarily that it’s growing fast these test vary greatly in determining the size of the growth. You focus on positive healing, I’m praying for your recovery and I know Jesus can see u through this

  • ed111
    ed111 Member Posts: 54
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    Thank you all, and thank you Ms_secgo! Thank you for your prayers, praying for you, too. I have a sense that new life is only beginning through this trial, so seeing it all as positive. And who knows, maybe after three weeks of delay with C infusions, there will be little to operate on )

  • monarch777
    monarch777 Member Posts: 338
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    I didn't meet wth my oncologist until after surgery and my path report was in. My onc set up my appointment in advance so as soon as my path was in I could consult with him but my surgeon gave me all the diagnosis before that appointment. I know it's a wait but once you start your treatment i steady and fast. Hugs and peace.

  • ed111
    ed111 Member Posts: 54
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    Thank you, JoE77! May I ask what tests did you have to diagnose mets to bones? Cause this is my main concern while hoping that nodes will remain clear till surgery. They say, size doesn't matter, it's still stage1 cause nodes are clear on MRI. My lungs are clear, too. But I didn't have pet scan, how do they know it did not spread to bones? Nodes is not the only way for mets, as we know.

  • monarch777
    monarch777 Member Posts: 338
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    I was 6 years out from diagnosis and was experiencing pain in the lower back and hip which steadily got worse. An orthopedist ordered an MRI to look for bulging disc or small fracture. I never had scans at the beginning. Are you sure you tumor is in cm and not mm? I didn't have pet scans at the diagnosis. Surgery and pathology will determine further testing and treatment path. It's a hard wait but it's part of the cancer story. Hang in there and treat yourself to special things before surgery. Do the preps of favorite foods and books or movies along with comfy clothes for recovery. The women on this forum are a wealth of knowledge and support. Keep us in the loop.

    HeartJ

  • ed111
    ed111 Member Posts: 54
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    Thank you so much! Frankly, that 'wait is a part of a cancer story' somewhat pisses me off, not what you say, but the fact that it is. There are multiple comprehensive studies that show DIRECT correlation between wait time=tumor size=spreading to survival. Survival percentage drops dramatically with every two weeks. How many of us would be spared radiation, chemo and eventually mets, if those who were diagnosed early would not need to wait for weeks or months for surgery? WHY is wait a part of the cancer story, when it's statistically proven that wait=less survival? And more debilitating treatments, yes.

    I would've never went big center road, if I'd knew that their wait for surgery is almost two months. I'd have mine done two months ago in my local hospital.

    The wait part of the story just doesn't seem to make any sense if our health, and not centers profit, is the center of the picture.

  • ed111
    ed111 Member Posts: 54
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    So I made a full circle, lost almost two months with "best of the best", and came back to my local hospital. This thing is responding to vit C infusions extremely well, shrinks, softens, but then day after grows back with a vengeance. Can feel nodes heading to underarm where they haven't been, and pain in the shoulder blade which doesn't go away. My local hospital will do more tests as they say "there is more than meeting the eye" and likely will start with chemo, at least they have it in mind and I'm meeting MO first. Cannot believe that this system let diagnosed cancer grow from almost nothing to whole body disease before they start treatment. Don't set your foot into Dana Farber.

  • alicebastable
    alicebastable Member Posts: 1,940
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    ed111, do you have links or citations on the studies that you mentioned about two-week delays having such poor results? That sounds limited to the worst cases of inflammatory breast cancer only and not the more common types.

  • ed111
    ed111 Member Posts: 54
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    can't find two-weeks stats now, but here is >30 days delay stats translated into 9-10% decrease in survival rate (that is 5 years).

    All types of BC

    https://www.breastcancer.org/research-news/timely-treatment-improves-survival

    '"For elective things, such as taking time off for a family event, or where options for scheduling exist, these data provide information to patients and clinicians, so they can understand the tradeoff in survival where certain choices they make may delay surgery,"

    I've been told, 'If you plan to travel, you can go, there is no urgency'...

  • cassiecanada
    cassiecanada Member Posts: 101
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    Hi Karen- I read your post with great

    interest. I see you had a double mastectomy

    for a stage 1 tumour followed by reconstruction.

    Then, you had 2 separate lumpectomies

    followed by chemo , radiation and hormone

    treatment. Were these lumpectomies

    recurrences ; but if mastectomies were done

    prior, where were the lumpectomies if there are no breasts.

    It makes me question a mastectomy in

    my situation....





  • cassiecanada
    cassiecanada Member Posts: 101
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    Hi Ed111-

    What was revealed in biopsy?

    stage etc

  • ed111
    ed111 Member Posts: 54
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    Hi cassiecanad… Biiopsy: Invasive ductal carcinoma with lobular features, nuclear grade 2-3, at least 0.7cm. They gave no staging.

    MRI though //shows irregular

    1.7 x 1.5 cm mass exhibiting rapid uptake with washout kinetics,

    with associated contiguous heterogeneous associated non-mass

    enhancement extending anteriorly and involving the nipple

    measuring 8.6 cm x 3.5 x 2.1 (AP x TR x SI) best seen on

    Series10: images 41-51 and series 19: image 28. Susceptibility

    artifact likely from biopsy clip is seen within the central

    breast at mid depth correlating with biopsy clips seen on

    mammographic images. Nipple inversion is seen. The T2 weighted

    series shows no areas of abnormal signal intensity. //

  • Nanomom11
    Nanomom11 Member Posts: 27
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    I know first hand how scary large tumors can be so I thought I’d let u know my history in hopes of helping u a little. The first line on my diagnostic report actually said “huge area of neoplastic involvement with malignancy” and turned out to be roughly 12cm and that was not even the spot I went to the dr for. The spot I had hurt and was sore to the touch. I was told a couple of times that breast cancer doesn’t hurt. Ha! WRONG. I tried to get in at our big teaching hospital and couldn’t even get a call back. I chose to try a smaller breast surgeon and they were wonderful but I still had to wait 3 weeks. I had a very successful double mastectomy with clear margins even though my right breast was pretty much full of IDC (Grade 2) My surgeon got everything but I did have a small area in my lymph nodes that had to be removed. I have moved on to chemo now and all my scans (bones, liver, lungs, etc) are clear. The waiting is so hard and I felt like I should have had surgery the next day! But thankfully even though it was huge it turned out not to be as bad as the number made me think it was. I hope everything goes well. Keep pushing them. I was not a quiet patient

  • ed111
    ed111 Member Posts: 54
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    Thank you Nanomom11 ! What a journey. Good that you all clear. Mine is sensitive to pressure, too. Taking tons of anti-cancer stuff: baking soda, chaga and reishi mushrooms, artemisin, turmeric, high dozes vit C iv's 2x week etc while waiting. Thinking through a trick of working from home through post-mastectomy ) Feeling better going with local hospital close to home and with home-like attention.

  • KBeee
    KBeee Member Posts: 695
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    cassiecanada, even when all breast tissue is removed, a few breast cells can be left behind, and you can still have a recurrence, though very rare. I had 2 tumors with my recurrence, and one was out in the soft tissue with no breast tissue at all found. They believe it was seeding from original biopsy. At any rate, when they remove those, it is still considered a lumpectomy. Even a surgical biopsy is termed a lumpectomy. It's just their terminology. It is very rare to have a recurrence like I had. As we know, low risk doe snot equal no risk.


    ed1111, hoping your surgery is scheduled soon. Do be sure to let your surgeon know of your supplements. Tumeric has blood thinning properties and can cause bleeding, so if you take it too close to surgery, they could potentially postpone your surgery.

  • ed111
    ed111 Member Posts: 54
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    Thought I will post an update, cuz it could be useful for others. BE YOUR OWN ADVOCATE.

    I found my tumor when mammo didn't show it and dr couldn't feel it. Then after diagnosis, I pressed for MRI when Dana Farber surgeon dismissed it as something small and no worries. MRI showed 8.6x3.2cm non-mass cancer. Two major cancer centers said the only option is mastectomy. Nobody really showed me MRI and explained what that non-mass area was. I assumed it's a frontal area and, indeed, what else could you do but mastectomy. Only now, when I went back to my local hospital, an assembled team of 4 surgeons looked at it and said lumpectomy will be enough.

    Size does NOT tell the whole story. My 8.2cm growth is not an across area, but a 'steam', an elongation from relatively small tumor deep back to the front. Quite odd, and doesn't require mastectomy, it could be taken out with lumpectomy.

    They scheduled full body scan and bone scan before the surgery to make sure everything is clean. Scheduling is moving very quick.

    Lessons learned: read, ask questions, be proactive, go to as many places as you need until you find the place where you feel comfortable and really taken care of -- not just your cancer and your breast, but all of you, you as a person. You MUST be a part of your treatment team, all your concerns must be taken into account. If you feel dismissed by your doctor, don't walk, run, no matter how "best" they are. If you feel strongly you need additional tests, ask for them again and again.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,761
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    Not only must you be part of the treatment team, you are the team leader

  • jessie123
    jessie123 Member Posts: 134
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    ed111 -- It sounds like your tumor is 1.7 by 1.5 cm with that long anterior extension. I just went through something similar. My tumor was 2.5 cm, but when they did the MRI it showed a 7.5 cm anterior extension. Mine was also lobular. That extension was not biopsied. My surgeon still said she could do a lumpectomy which seemed odd since the guidelines say lumpectomies up to 5cm. Anyway, after the lumpectomy the final path report didn't mention that long 7.5 extension --- just the 2.5 cm and 2 micro foci. My surgeon took out approx 3 inches by 4 inches by 1 inch of tissue --- a lot !!!! She got that extension. MRI's are known for false positives and I think that is what occurred. It caused me a great deal of stress. Also, I waited 3 months for surgery, because of all the pre - testing and waiting on appointments. My cancer was slow growing. No one seemed concerned about that.

  • ed111
    ed111 Member Posts: 54
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    Jessie, sounds so very much like my story! The strange part for me was that in two major centers no one bothered to explain the MRI report, so I lived for a month under impression that 8.6cm is the entire frontal area of my breast. And both centers said mastectomy only. Which, in fact, is not needed after all. Because elongation can be taken out, without cutting off the beast. Thank you for your sharing, this is what I'm expecting this ll scare will diffuse into as well.

  • cassiecanada
    cassiecanada Member Posts: 101
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    thankyou karen- this is great knowledge
    for me to have( terminology). I need
    all knowledge to make the correct decision
    should my gene test come back positive.
    I find this forum is the best place to
    get insight. The biopsy seeding
    you describe is startling. You must
    have a strong character to soldier
    on the way you have. Thankyou
    for your response