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Diagnosed 10 days ago - MRI shows tumor 4 times larger...yikes

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SuseMarie
SuseMarie Member Posts: 12
edited January 2021 in Just Diagnosed

Hello everyone, I am so pleased and relieved to find this site. I appreciate all of you and look forward to down the road in this journey when I'm able to take this present focus off myself and be there more for others, as I see so many of you do. I posted on another thread, I didn't realize I could start my own thread. I think I read somewhere that we can't start our own topic or something... Thank you to Melissa Dallas and Livin Life for your advice.

I am pasting what I wrote on another's thread as it is lengthy. I tried to summarize as best as I could.

I am so new to all of this - feeling like I've stepped into a web of uncertainty and scary potentials. On December 17 I went in for a re-do Mammogram. This was for a recall after a screening Mammogram I did last January. I was leery about doing the screening Mammogram almost a year ago now because of my history of this same area of my left breast which has troubled radiologists since the late 90s when I had a screening Mammogram and then an ultrasound but it was decided it was just dense breast tissue. Then in 2013, I had the whole shebang which ended up as a excision biopsy and after several days of scared waiting it was determined to be nonmalignant.

Fast forward to last January which was the next screening mammogram I had after 7 years. yes too many years between, but in my mind and thoughts during that time I felt that area of my left breast is just "funny" and will bother them and they will want to go in there digging again - only to find nothing of concern. Because as I figure most of us probably believe - it can't be cancer.

So finally I went in for the re-do, one year later, not concerned all this time of there being any real need for that re-do. Part of the reason I did it though is my insurance deductible is met this year. To briefly mention, it has been a crazy year medically for me - someone who has always had excellent health. Started off in September, a broken foot requiring surgery, then worsening reflux and hiatal hernia requiring surgery on Dec 7. In-between there i was having severe chest pain and went through a whole series of heart evaluations - ending with a cardiac catheterization which showed the heart of a 20 year old!! (I'm 63) It turns out the reflux and hiatal hernia can cause esophageal spasms which can feel like a heart attack. Nice to know I have a good heart though!

Back to December 17. Many films of that left breast, then ultrasound, then radiologist coming in talking about a "mass" that appears suspicious, and strongly recommended a biopsy. She said it appeared slightly larger than what they were seeing last January. She called me the next morning with the news that it was cancer, and in My chart connected with hospital my system, it shows Invasive Ductal Carcinoma Grade 2 with size 0.8 mm.

On Christmas eve I went in for an MRI which showed the tumor to be 3 cm. This was quite a shock - a big difference and tough news for myself and my husband. It also showed in the report in My chart that the tumor extends to 5 mm from the pectoral muscle, not showing clear invasion of it but that the muscle is displaced.

Yesterday my tissue pathology report showed up as estrogen and progesterone positive, Her2 negative (thank goodness - from what I've read/seen so far). I have taken 100 mg Progesterone for 11 years, and a slight smidgen of Estrogen compound formula skin cream for 7 years. Stopped the cream last night and will call my MD today for advice on weaning off Progesterone. I am concerned how I will sleep without it since I take it at night and it definitely helps with sleep. Also concerned about side effects of hormonal therapy which I assume I will be doing, and the effects of eradicating every bit of those natural hormones from my body...

My surgery consult is scheduled Tuesday. My only unknown now, for staging where I am at, is lymph node involvement. I'm now worried about the tumor having a year left alone, and what it might have done in all that time.

My daughter asked me if I'm upset at myself for not going in sooner for the recall Mammogram. And I'm really not. I understand why I didn't, after my terrifying experience all for naught back in 2013. But hindsight does us no good anyway.

Thank you for taking the time to read my story, to you who did. Any thoughts are appreciated.

SuseMarie

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Comments

  • ctmbsikia
    ctmbsikia Member Posts: 756
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    I think you're right in not feeling bad. My 1st mammogram ever was at age 56 once I had a palpable lump, and a younger sister who was diagnosed almost 6 years prior. In hind sight, yes they probably would have found it sooner and smaller, but I still would have had the same treatment, prognosis, and follow up protocol. I would definitely ask advice on taking the progesterone. Best wishes to you going forward, let us know how it goes.

  • kathabus
    kathabus Member Posts: 45
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    Hi SuseMarie--Welcome. I wanted to share that it is not unusual for mammograms and ultrasounds to be off with the sizing. My mammogram showed 8 mm, as well. None of my imaging showed the mass any differently. After surgery, we found out it was 2.5cm. I was also told there was probably no lymph node involvement, and there was. Not meant to scare you....you absolutely may not and hoping you don't....but it's important to know that imaging all works in different ways and you sometimes don't know what you're dealing with until the MRI....or even after surgery.

    Another point....there's no guarantee this would have shown up anyway if you went in last year, so no need to beat yourself up over that. Sounds like that sucker was hiding pretty well. If only 8 mm was showing, not sure you would have seen it much sooner anyhow. But glad you went in and found it when you did!

    One last thing....the anti-hormonal therapy was the scariest thing for me. I was 43...had an oopherectomy and I take an anti hormonal pill on top of that. Thought my life was going to fall apart. It didn't. Everyone has their own experience....for sure....but I have had minimal side effects, thus far. Exercise has been my focus through it all. Maybe that helps.

    Good luck with all of your treatment moving forward and keep us posted!

  • laughinggull
    laughinggull Member Posts: 512
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    Hi SuseMarie,

    Welcome on board -very sorry for your diagnosis, though. You will find great support here -and since you have a demonstrable good heart, you will be very helpful to others I am sure!

    (forgive me, couldnt help the heart joke) Smile

    I am another very-dense-tissue case, I found my lymph node lump and breast tumor myself three months after a clear 3D mammogram and thorough exploration by a breast surgeon who didn't see anything suspicious. I had had pain in that breast for a year. Even after my surgeon told me he was sure those palpable masses were breast cancer, he sent me for a diagnostic mammo, and they couldn't find anything, they asked me why I was there, and suggested the surgeon was wrong to suspect cancer. Then after 5 months of chemo, I had a pre-surgery breast MRI that came out clear, then surgery found a 3cm remaining tumor that didn't show up in the MRI. So I know how upsetting it is not to have been able to catch this earlier. You did everything right, but with very dense tissue the available diagnostic tests are very inaccurate.

    And now, all that is irrelevant. The important thing is that you finally did catch the sneaky bastard now, rather than five more years down the road, and now it's the time to get treatment and blast it into oblivion. This is a very common disease (unfortunately), and treatment is annoying but very doable, especially if you are in good shape. They will check your nodes, maybe remove some (or many) during surgery, and knock them down with appropriate treatment if needed. You don't know yet, and you may not have any node involvement; but if you do have it, it will not be the end of the world and you can still have a good prognosis. You will be able to handle this, I promise!

    I find the side effects of hormone treatment easy to live with (I had my ovaries removed as well), and I promise you that I sleep like a log. My focus to deal with that is exercise, exercise and exercise. Helps with everything!

    Best of luck and stay well,

    LaughingGull


  • moderators
    moderators Posts: 8,055
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    Dear SusieMarie - We're sorry to hear of your diagnosis, but we're really glad you've found us and decided to reach out to our members. We hope you get responses soon! We know the beginning is hard, with so much uncertainty, but it will get better!

    We would like to recommend you to take a look at our Resources for the Newly Diagnosed, it can help you understand pathology reports, learn more on treatment options, and deal with the stress that so often goes along with a breast cancer diagnosis.

    We hope this helps! Please let us know if there's anything at all we can do for you!

    Best wishes,

    From the Mods

  • salamandra
    salamandra Member Posts: 736
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    My MRI showed my tumor significantly larger than my other imaging. My oncologist said that it was probably inflamed/aggravated from the biopsy and would be closer to the size predicted by mammography+ultrasound. She was right. My MRI showed 2.7cm, my mammography/ultrasound showed 1.2cm, and when it was removed it measured 1.8cm.

    You are still at the beginning of cascades of information coming your way. So far, things are generally favorable (smaller tumor, ER+/PR+, no apparent node involvement.), and hopefully they will continue going that way! But the full picture of the cancer won't emerge until much later in the game (for me, after surgery and oncotype results). Things that can seem bad can turn out fine, things that can seem good can turn the other direction. A large tumor can have a very low oncotype, a tiny tumor can turn out to have extensive node involvement. Information is still emerging, try to take it with a grain of salt even while you're experiencing that horrible roller coaster of emotions!

    Hang in there! Heart

  • SuseMarie
    SuseMarie Member Posts: 12
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    A big thanks to each of you! So helpful. Some thoughts that rose up.... Most of you don't have "chemo" as a treatment, though most have had some lymph node involvement. Maybe the chemo is listed as drug used?

    Laughing Gull - great reference to my heart - yes - it HAS been demonstrated as VERY good HeartI do try to be humble so it is good in more ways than physical haha.

    I'm learning as I go - but do wonder what conditions require chemotherapy. Upon first diagnosis I told my husband that chemo is one thing I will NOT do - they can take their chemo and ..... well you can imagine the rest. Now, since that comment I have altered my thinking to realizing some of this treatment may be very unpleasant, so much is uncertain, but thank goodness this is a conventional and common (unfortunately) - as LaughingGull said - disease, and I now feel it best to trust that the medical professionals will know what is best in my case and I will do whatever they recommend most likely quite willingly.

    Really appreciate hearing your hormonal therapy wasn't so bad Kathabus. I did read in one of the articles here that the therapy for postmenopausal women has less side effects, which I am. And the fact that you didn't have a bad experience with them is great , and great to know!

    Salamandra - wow you opened up a possibility for me about the size of the tumor in the MRI possibility being from all the inflammation caused from the biopsy - which in my case was only a week prior. It is very nice to know this happened with you. My 3 cm may not be set in stone....at least possible.......! Also to be reminded to not be constantly guessing and thinking I can know anything. It is hard for me to do that since I've always been inquisitive and love learning - which is fine but I need to remember not to think I can know outcomes until they happen.

    ctmbsikia, you said you believed your treatment would not have been different if your tumor was found sooner. I see that so many have the same course of treatment - Lumpectomy, radiation therapy, hormonal therapy. Not always in that order. I am wondering what conditions do change that.

    My MRI also showed high intensive (bright with contrast) foci in both breasts - few in the right breast and multiple in the left breast - which stated may be prominent intramammary nodes. Wondering about those....and will ask surgeon tomorrow.

    SuseMarie


  • elainetherese
    elainetherese Member Posts: 1,627
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    Hi!

    Many early-stage breast cancer patients don't get chemo. Those who do get chemo are 1) patients who are triple negative (ER-/PR-/HER2-), 2) patients who are HER2+ (like me), and ER+ patients with a high oncotype number that indicates that the benefits of chemo outweigh the costs. By the way, my tumor was 3.9 cm according to the ultrasound but 5 cm + a lovely satellite according to the MRI. MRIs are often more accurate than ultrasounds in predicting the size of the tumor, but not always, as Salamandra's case shows.

    ((Hugs))

  • SuseMarie
    SuseMarie Member Posts: 12
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    Good info ElaineTherese, thank you!! I don't yet understand what the ER+ is or the high oncotype. The HER2 result is in my pathology report, but this is different and maybe is part of the genomic testing that is done later? I'll find out soon enough. I do see your treatment was extensive and therefore what can be expected with the HER+. I do hope you are doing great now!

  • elainetherese
    elainetherese Member Posts: 1,627
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    Hi!

    With ER+ cancer, estrogen was fueling the growth of the cancer. That is why ER+ breast cancer patients take either Tamoxifen or an aromatase inhibitor to prevent estrogen from serving as that fuel. Yes, the Oncotype Test is genomic testing which tests the cancer for genes associated with recurrence. The patient is given a score, based on what that testing finds. I believe that if you get a 26 or higher, chemo will be recommended.

    Yep, I'm doing fine now. One of the nice things about HER2+ cancer is that it typically recurs in the first five years after diagnosis. I'm six years out, and things are looking good.

  • Taralynn
    Taralynn Member Posts: 45
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    hi Suse! If it’s any consolation, my MRI also showed a “mass” that was double the size of what it actually was post surgery. My oncologist said he was fairly certain what was lit up on the MRI was all cancerous when really half of it was. Afterwards the surgeon said the extra “size” could have been caused my inflammation, fibrosis etc.

    I sometimes finding myself kicking myself because I hesitated a couple months before I got checked. All the professionals I speak to assure me it would not have made much difference, if any. I’m also a grade 2 ER/PR+, HER2- and it’s not the most aggressive of cancers. Hang in there, this part is most stressful!! Once you see your surgeon hopefully you’ll feel a bit better when a plan is in place :)

  • edj3
    edj3 Member Posts: 1,579
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    I believe your biopsy path report also lists the percentages of estrogen and progesterone. At least mine did and those values were confirmed in the pathology report post-lumpectomy.

    Not all cases warrant an immediately ONCOTYPE test or a MammaPrint. I asked for it myself b/c I knew there was a strong possibility I would not take tamoxifen and I wanted to know what my risk was. So you may ask about that to help shape your own path.

  • SuseMarie
    SuseMarie Member Posts: 12
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    It is nice to hear a another example of the MRI sizing being higher then the actual tumor Taralynn. Hoping.... Anyway a possibility,...!

    Edj3 my pathology report has 81 percent for Estrogen and 84 percent Progesterone. Seems high but have no idea of that is significant.

    Very happy for you ElaineTerese for your 1 year beyond the 5 year risk. Yay!!

    Is it complicated what the conditions are that warrant an Oncotype test?


  • SuseMarie
    SuseMarie Member Posts: 12
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    No need to answer about qualifying for an Oncotype test. Found a good article on it and not having seen my surgeon yet or an oncologist there is a lot to be filled in yet.

    Ok, maybe time to get busy with something else for awhile besides breast cancer. I do hope you are right Taralynn and this is the worst time because of uncertainty.

    Will post update after surgeon appointment tomorrow.

    Thanks again,

    SuseMarie

  • LivinLife
    LivinLife Member Posts: 301
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    So glad you posted your own thread!!! and lots of great feedback for you from so many!!! The only thing I have to add is another example of an MRI that showed a larger amount (5 cm) than the diagnostic mammogram (about 3 cm). Final path showed most of the 3+ extra cm was a lot of benign and precancerous conditions.... Please keep us updated on additional steps you take, ok?

  • SuseMarie
    SuseMarie Member Posts: 12
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    Will do - and good to hear! Thanks LivinLife!!

  • hnsquared
    hnsquared Member Posts: 47
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    side....so sorry you are here with us. These ladies have given you great information. I just wanted to add that during my first meeting with a surgeon she felt a suspicious node which she biopsied and had cancer. Because if that I did chemo first. I was terrified of doing chemo but I wanted to be aggressive. Chemo wasn’t what I expected from TV and movies. I worked full time, exercised and did really well. I hated losing my hair but it’s growing back 😁. Hopefully you won’t need chemo but if you do it will be okay.


  • SuseMarie
    SuseMarie Member Posts: 12
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    This is why being here is so great. hnsquared, that is so good to know, that chemo was like that for you. Yes I've been mostly scared of that because of all I have heard and seen. Exercise has been mentioned by more than one who has responded on this thread as making it all more bearable.

    I saw my surgeon on Tuesday. When he examined my underarm lymph nodes he didn't feel anything suspicious. So I was glad to hear that! I elected to go with a Lumpectomy, followed by radiation treatment after healing from surgery which I guess can be up to 6 weeks, and then the radiation itself can take 4-6 weeks, done every Monday through Friday. We live two hours round trip from where this will be done so that is a bit of a bummer.

    Of course all this depends on the results of the pathology findings after surgery, any cancer cells either in sentinel lymph nodes or in outside margins of removed tumor. Dr Badger said he will be operating under the assumption that the tumor is a full 3 cm, and will be removing a wide margin around that so actual tissue removed will be 5 cm at its widest point. He will also be removing all my sentinel nodes, anywhere from 1-4, and these and the mass tissue removed will go to a lab but I won't stay asleep while nodes are checked by pathology like I have heard other places do. I will learn the results of both within a week after surgery.

    I am very hopeful for no cancer cell spread beyond tumor, but also am trying to stay realistic, so I'm not too devastated if there is.

    I have a question for those of you who have gone through radiation. I have read and heard that it can cause a fatigue that worsens over time and can last beyond the treatment. How was it for you?

    Pleas share any of your experiences on any of this, thanks again,

    SuseMarie

  • edj3
    edj3 Member Posts: 1,579
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    Hi SuseMarie, you can find a ton of information in the radiation section of these forums. Click here to go there.

    My own experience with radiation was not bad in terms of my skin but the fatigue is real, and for me it did last for months. I'm very active, I work out a ton so that wasn't a lot of fun. I pretty quickly figured out though that I was going to be exhausted anyway even if I didn't run, so I ran throughout rads.

  • elainetherese
    elainetherese Member Posts: 1,627
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    Radiation was tough on my skin, though nothing really bad happened (just got really red like a bad sunburn). I didn't notice any fatigue myself, but many patients get it like edj3. I worked through chemo and rads, so found neither to be particularly debilitating.

  • WC3
    WC3 Member Posts: 658
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    Hi SusieMarie:

    The roll of progesterone and progestins in breast cancer is complex and can both increase the risk of breast cancer in certain situations, and be used to treat breast cancer in certain situations though this is not the standard of care.

    I don't know what your oncologist's feelings on progesterone will be but having used micronized progesterone cream, which is actual progesterone and not a sythetic progestin, I can tell you that when I quit cold turkey I went through horrible withdrawal which caused my blood pressure to spike and made me very ill for about a week. In hindsight, I should have tapered off of it.

  • annadou
    annadou Member Posts: 46
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    Hi SuseMarie

    I read your post and thought there is some who has been through the same difficult time as me this last month

    My first lump was 2009 and I went through the whole package of chemo rads and arimidex. Yearly CT Scans bloods etc etc. Stopped arimidex in 2018 was six months late going for tests and wham it's back in my lungs. So now I am catapulted into stage 4 I see the onc on 7/1 for my treatment plan and I think it's going to involve the whole lot again The first time round I was very pro active in finding all the info this time I am just totally numb

    Anyway I just wanted to encourage you and let you know that I did well fit 11 years and although no one is going to volunteer for chemo don't let it frighten you. It's a challenge but you get past it. The anti hormone(I had Arimidex) must have worked well and kept it at bay seeing as two years after stopping it was back. I wonder if we should take them for life. Anyway the side effects of those were minimal for me few aches and pains but nothing really bad

    I also wonder if I had had my scans on time... if I had still taking the pills...if I had taken notice of a very very slight cough....that I would never had gone to the docs for ...

    I encourage you to take whatever they can throw at it and I know it sounds hard but you will manage

    Thanks for listening and my best wishes to you and all on this journey

    Anna

  • SuseMarie
    SuseMarie Member Posts: 12
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    It is really so helpful to hear your personal experiences. For you Edj3 the radiation caused fatigue and not for you ElaineThomas. Always I'm reminding myself there is no real way to predict how things will go for me in any certain way. But knowing of the various possibilities is helpful. In reading about Radiation (rads right?) one of the side effects is listed as tiredness. My daughter (nurse) has seen the tiredness in her patients.

    WC3, I went ahead and stopped the Progesterone. I am taking Beedryl while getting used to being off it so I can still get some sleep. I started thinking maybe I should've waited until I see the Medical Oncologist - don't have an appointment with one yet, but as long as I have now gone three nights without - and 84 percent of markers were Progesterone, really there is no doubt that I"ll need to get off it.

    Annadou you had every reason to believe you were free and clear for good it would seem to me, even in my newness to all this, I am so sorry to hear your situation since it must have been a real shock to find out how things had progressed. Nine years of Arimidex and only recently, I read, they increased usual therapy from 5 years to 10 years. It sounds like you did about everything right - you were feeling confident, of course it is natural to wonder if you had done this or that, might it be different, but nothing sounds very surprising - natural response most of us mere humans would have. All the best to you Anna with hugs and warmest wishes. Thank you for your kind message.

    SuseMarie

  • WC3
    WC3 Member Posts: 658
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    SuseMarie:

    In ER+/PR+ HER2 negative breast cancer, estrogen fuels it but progesterone may inhibit it. The research on it's role in breast cancer is on going though and any treatment decisions should be guided by your MO.

  • Astrid
    Astrid Member Posts: 1,033
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    Hi SuseMarie

    Just wanted to send all good wishes to you.

    As it stands I guess you would be Stage 2A and if axilla node involvement then Stage 2B. I had chemo with Just 1 positive node involved.

    I guess a lot has changed since 2002 though. No clue what my oncotype or any of that is, but I do think you are right to go with trusting mwdicl experts on the best tx plan for you.

    I hope there will be no spread to nodes or anywhere else for you. You have had quite the run with health and body issues eh?

    HugAstrid.

  • SuseMarie
    SuseMarie Member Posts: 12
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    Regarding Progesterone, I'm back on it. I wasn't sleeping at all. And kept coming across conflicting information on it. I am going to wait until my visit with the Medical oncologist, which should be within a couple weeks after surgery, which is tomorrow. Thanks for your info on it WC3. I'll go with what is recommended and probably taper just by taking it every other day for awhile before quitting. Unfortunately 100 mg capsule is what I take - it is natural progesterone - and the smallest and can't be halved.

    Astrid, thank you for the good wishes! It seems like the major uncertainty now is the path report after surgery. Probably many of you remember that wait as being the worst at this time of early diagnosis. Sure seems so to me.

    I did have a phone appointment with the Radiology oncologist last week and he said I'll have 15 treatments over three weeks at the minimum unless there is any lymph node involvement or unclear margins. He also looked at the MRI image part of the report and said to him it looks like one mass that is 3 cm at it's longest point. He seemed to think it will be very close to that. Also said it is good that the rest of the breast appears clear and no apparent lymph node changes. I know this really only means there isn't already a large amount of spread to them so really doesn't mean much since even a small cell spread is plenty bad.

    The "breast navigator" who works at our Cancer care Institute and manages a lot of the breast cancer patient's care sent me a post surgical bra. It is for either a lumpectomy or mastectomy and has stuffed pads that can be placed inside cups, and some of the stuffing can be taken out for a lumpectomy, which I plan on doing since the surgeon said he will be taking out a 5 cm amount. Also has drain holders - which I'm hoping I don't have - but if I need them I guess I DO want them. Maybe I should look around for more info on this, on what to expect, but if any of you have experience with this after a lumpectomy, I'd love to hear.

    Suse




  • edj3
    edj3 Member Posts: 1,579
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    SuseMarie, first good luck tomorrow w/ your surgery.

    My dad's a retired MD and after I mentioned the fatigue, he said he'd seen that so often with his patients who ended up needing radiation. Said it really took the starch out of some of them and I thought that was a really good description. For me, it was the kind of fatigue that's not cured by sleep so as I've mentioned once I realized I was in for fatigue no matter what, I kept up with my running & weight workouts. Not doing them wasn't going to stop the fatigue.

  • elainetherese
    elainetherese Member Posts: 1,627
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    Hi!

    I'm glad your doctors are sending you home with a post-surgical bra. I ordered a few tight sports bras for myself to be used after my lumpectomy, but they weren't tight enough. As a result, a seroma formed which later had to be drained before I could begin radiation. So, tighter is better.

    I ended up with one drain on my right side because I ended up having all 20 of my Levels 1 and 2 lymph nodes removed. I'm pretty sure you won't need a drain if you're just having a few sentinel nodes removed. Drains are annoying and have to be emptied. If you do get a drain, try to rest and not overdo it. Otherwise, it will take longer to get rid of your drain (something I wished I had known). Good luck!

  • spookiesmom
    spookiesmom Member Posts: 8,176
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    By the time you get to rads, you have been through a lot. Some tests, surgery, chemo, and you are tired and just want to be Done!! Add on going Every. Single.Day. The fatigue is real, nap if you can/ want to. Don’t feel guilty.

  • annadou
    annadou Member Posts: 46
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    I seem to remember wearing a tight spanx vest type thing and a front fastening bra. I had a drain which was a bit annoying but it's not for long. It all seemed to heal up fairly quickly

    Keep well al

  • cathy67
    cathy67 Member Posts: 411
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    Hi Kathabus,

    We had quite similar experience. my biopsy said 8mm tumour, and no node involvement, and it turned out 2.1 cm with one node involvement. I was stage 2B, this was shock to me! That area was on six months follow up, cannot believe so close follow up still have this consequence. I am on arimidex, I am now 53 years old, also similar as you, I got very low oncotype score, so I dodged chemo, the lucky thing in this nightmare.


    Cathy