22 years after DCIS

JodyJ · October 2019

I was diagnosed with multicentric, multifocal DCIS in my left breast 22 years ago, at age 40. I had no chemo or radiation, just simple mastectomy and saline implant reconstruction (the textured Allergan brand, unfortunately). In the years since, I had various scares with false-positive mammogram results and other issues. Anyway, I managed after many of these to finally put the fear of recurrence out of my head. The ups and downs had been exhausting. Now I'm right back into it!

This July, I noticed a quickly enlarging neck mass from a lymph node, and a few days later, I began to have some unusual back pain. An x ray showed an abnormal appearance of my T10 vertebra. This led to a bone scan, which indicates "highly suspicious for a bone metastasis." I will have an MRI of my thoracic spine in 2 days. The pain, which moves around a bit and is in more than one place in my back, seems to be intensifying. I really want to have a conversation with an oncologist, but my primary care doctor wants to be methodical and just wait and see what the MRI results will be. So, a deep breath.

I have let myself become totally immersed in this, reading and learning as much as I can. Not sure how healthy that is, but it's how I'm coping. I want to say how amazing it is to have this forum. I appreciate all of you so much, and I feel so much less isolated.

Thanks for listening!

Jody

mistyeyes · October 2019

Wow Jody, I imagine you are dealing with some major anxiety right now. I am like you I read and research into all of it, sometimes it helps and sometimes it makes me crazy. I try to research it with a detachment and just want to learn it, but at times I get myself really scared. You probably can't do anything anyway until after the results from your MRI comes in. I will be thinking of you this week, hoping for the best.

Yogatyme · October 2019

Whew!! I know you have to be so, so anxious!! Like you and mistyeyes, I too will read everything ever written on a subject and certainly have done this w bc. As you both note, it can be both comforting to have the knowledge and scared to death at the same time. I drive myself crazy and my friends sometimes have to gently tell me to SHUT UP about.....(current Interest/concer). That said, your current situation of that torturous waiting makes it hard to not dive into the literature. Hoping for the very best for you.

MBPooch · October 2019

I totally get this. I overthink every ache and pain. Coming up on my yearly physical and that always gives me some anxiety. I've been experiencing some shortness of breath the last few weeks and while I know it could be a ton of different things I'm worried it's something more. I imagine to some degree that doesn't ever really go away. Will be thinking of you Jody!

MaryJC · October 2019

Hi JodyJ, can you make an appointment directly with your onc, particularly since you have bc in yurt history? I recommend researching things that might be encouraging for you rather than what might fuel your understandable anxiety. In my thoughts

JodyJ · October 2019

Thank you all so much for your replies. I know that it's good to take breaks from the hunt for information about whatever is going on with me. I appreciate your encouragement and kind thoughts.

MaryJC, my former onc retired and had released me back to my primary care dr several years ago. So I'm currently onc-less.

The cancer centre wants to see results of CT scans before assigning me to someone. My dr wants to wait for the MRI results. I'm hoping the thoracic MRI will show the area of most recent pain -- it feels a bit lower, over the kidney. I'm determined to reach a place of calm through all if this. Wherever it goes!

KBeee · October 2019

Hoping you get answers soon and that it turns out to be benign. Since there is a possibility of cancer return, ask all local friends who've had cancer what they like nad dislike about your oncologist. Should you need one, you'll be able to request one rather than being assigned one.

mistyeyes · October 2019

JodyJ - I love your statement " I'm determined to reach a place of calm through all if this. Wherever it goes!" That is an ultimate goal for all of us. I hope that you have that peace and calm within .

Cowgirl13 · October 2019

Jody, definately make an appointment with your onc. Your onc should be the first line for treatment.

JodyJ · October 2019

That is a great idea, KBeee. Thank you!

JodyJ · October 2019

I hope the same for you, mistyeyes. Thanks for highlighting that.

JodyJ · November 2019

Hi again, everyone. I thought I'd post an update to this thread that I started, although technically it no longer belongs here. The MRI and a subsequent CT scan showed extensive metastases to my spine, along with an area of compression from a soft tissue tumour at T10. Today, I received the report from a breast MRI I had on the weekend. It seems that the metastases are coming from a new primary breast cancer after all. The report described multiple suspicious areas in my right breast, and they correspond to areas that have felt worrisome for a long time. The other side, with mastectomy and implant, looked normal.

The breast lesions did not appear on the mammogram or ultrasound I had in June. I keep thinking that I would probably not be in this situation if my yearly mammograms had been replaced by MRIs. Useless to dwell on that now, though. I will be having an ultrasound-guided biopsy next week. Will also be seeing a neurosurgeon to advise about the spinal compression. One step at a time. Thank you, all. I am so grateful that this forum exists.

Palesa2018 · November 2019

I am really sorry to hear this JodyJ. Wishing you all the strength as you go through treatment. Thank you for the update.

Beesie · November 2019

Jody, I am so sorry. What a shock.

I believe that the risk of a new primary for those of us diagnosed previously, whether with DCIS or invasive cancer, is higher than the medical community tells us, and one of my big frustrations is the ineffective screening that breast cancer patients get as we move years past our initial diagnosis. At first we may get extra screenings (I did) but after a while we are placed back in the pool with everyone else, and yet our risk to be diagnosed with a new primary is higher, possibly much higher, than the average woman. We shouldn't have to fight, beg and cajole to get adequate screening, and yet that often seems to be the case, not just for those of us in Canada but for many of our sisters in the U.S. too (and the UK and everywhere else, it seems).

As you said, for you there is no point in dwelling on that now - your energies need to be focused on your treatment ahead. I hope the appointment with the neurosurgeon goes well and he/she presents you with good treatment options. Wishing you strength ahead.

JodyJ · November 2019

Palesa and Beesie, thank you so much for your good wishes.

I could not agree more, Beesie, with what you state in your second paragraph. I was no doubt seen as difficult by my oncologist because of all the questions I asked, mostly stemming from information that he or his colleague had given me years before--that because of my breast density, only MRI was going to detect a new cancer. By the time he released me back to my primary care doctor, around 5 years ago, it was a relief to let go of that struggle with him. I also had no more room emotionally to continue to be anxious about a recurrence or new cancer. I was glad I wouldn't have to see him and have those tense interactions with him again. In fairness, I understand that he was dealing with resource constraints that were out of his control. But still. Here I am, eh?

Sorry to go on so long about this! Now it's time to focus on what's ahead. Thanks again, guys.

KBeee · November 2019

Beesie, I could not agree more. Jody, I am so very sorry you are dealing with this. Hoping you have a plan in place soon to kick this back and get you to NED.

JodyJ · November 2019

Thanks, Karen. I had the ultrasound breast biopsy today. Radiologist and technician were great and answered all my questions. A large mass that unbelievably had not appeared on June's ultrasound. Still some more steps before treatment can begin, but I feel relieved to be getting closer to a final diagnosis.

HopeWins · November 2019

wow... I'm so sorry JodyJ. Wishing you all the best in your treatment. My heart really goes out to you.

Beesie, totally agree on misinformation. At my genetic counseling appt i asked a question about risk of a new primary if genetic markers were negative, and I quote, she said - No greater than the general population.

It was craziness. As if all bc is just a lottery unless we're gene carriers. It's simply not true and it's so frustrating. There is a real lack of information on new primary cancers for women who have had bc. It's a huge gap.

JodyJ · November 2019

Thanks, Hope. I am nervous about the treatments to come (and upcoming spine biopsy). I'd had only surgery for the DCIS and felt that I'd gotten away easily.

This is maybe a separate topic, but one of the puzzling things about this large breast mass that was biopsied is that none of the clinicians I saw recently could feel it when they examined me. But I could feel something. I imagine this is a common experience. How do we respond during a hands-on exam when they say, "There's nothing there"?

Rondeezee · November 2019

Hi Jodi, I, too, had a recurrence 22 years after being diagnosed and treated for DCIS with a lumpectomy and radiation. After so many years gone by, I thought I would never deal with breast cancer again. In 2018, I was diagnosed with IDC. I opted for a double mastectomy with DIEP flap reconstruction. No chemo but I am on Femara and tolerating it as best I can with trigger finger and wrist pain. I am so grateful that my second cancer was found early with no lymphovascular invasion, no lymph node involvement, and no metastasis. I truly hope I have done all that I can do to prevent another recurrence. This has been tough both physically and mentally. Sending gentle hugs and best wishes in your new journey and keep believing that you will beat cancer.

JodyJ · November 2019

Hi, Rondeezee. I am sorry you've had to deal with this again. After so many years, it really does mess with our heads, doesn't it? Still, what a relief it must be to have caught this early on. Bone mets was my first clue, so while I may not beat cancer, I want to do what I can to keep it from beating me anytime soon.

Thanks for your best wishes and hugs. Sending you the same!

Utahmom · November 2019

Jody,

I will be praying for you as you move forward.

I agree on information. I was just in the surgeon's office last week and he kept emphasizing about both breasts, not just one and recurrence. I had not heard that from anyone else but was so.glad as it may help me make my decision easier.

God be with you and may he keep His hedge around you.

mac5 · November 2019

JodyJ...I’m so sorry you have to deal with the beast again.

As to your what to do when your doctor doesn’t feel what you do....keep telling them there is something wrong!! We ALL know our body better than anyone else. When you sense or feel something is wrong, it is.

It may not always be what you think it is, but your instincts are correct. Keep asking for another opinion

rottie · November 2019

"...I imagine this is a common experience. How do we respond during a hands-on exam when they say, "There's nothing there"?".

Tell them to "...grab a biopsy needle and I'll tell you where to stick". Sending positive energy your way

JodyJ · November 2019

Utahmom, mac5, and rottie: Thanks for your responses and caring words. And yes, a lesson here is to trust ourselves and speak up. My breast biopsy confirmed invasive lobular cancer, which could explain the bone lesions. It is good to have clarity, finally.

Wishing everyone the best.

Jody

Jons_girl · November 2019

Jody I read through this thread. Wow I’m so sorry what your going through! Sending hugs yr way. 💐

You mentioned dense tissue. Were you dx with extremely dense tissue? Is that why yr onc said what he said to you? Just curious. I hope I’m not asking stupid questions. I have extremely dense tissue and have only had mammo and ultrasound for diagnostics I think in my lifetime. Mammo missed my cancer altogether. Ultrasound saw it. Maybe I should not just rely on ultrasound tho going forward. Thank you for sharing your experience.

SandiBeach57 · November 2019

Jody, it is very hard to understand how cancer can be missed and then bam, you have Stage IV disease.

I, too, had DCIS in 2006..close margins, grade 4, mastectomies, reconstruction. One year later, cancer returned in the remaining breast tissue. So implant removed, radiation to chest wall and tamoxifen.

My MO suspected it had spread in 2006 or 2007, but he said he couldn't treat on a hunch. All scans, blood work - showed no disease. He told me you just can't put someone on chemo without evidence. But he knew. For 10 years, I had yearly blood work and tumor markers. Even if I had a random liver MRI or CT scan or PET - the tumor has to be big enough to be seen on scans. Plus, not everyone has reliable tumor markers. So..ah. what a mess.

10 years later, breast cancer found in liver. So how was I diagnosed? I couldn't breathe. The liver tumor cells had migrated to lung arterioles. No xray, or scan could pick up those tiny tumor cells -a VQ scan confirmed it.

A part of me thinks if he did chemo back then, I wouldn't be in this situation. But also, if he did, and the mets still occurred, I would not have been able to take the chemo that saved my life. I realize I had 10 years of wonderful treatment free life..daughter married, grandkids, ran a marathon.

So you are right, try to move forward. The past cannot be undone.

Join us on the Stage IV threads. Peruse the topics..so many!

Yes, the future is unknown, try to plan goals - some for this week, some for later. Keep going.

JodyJ · November 2019

Jons_girl, yes, I believe my dense breast tissue was the reason the oncologist had said what he did. Still, I've had abnormal mammograms that led to biopsies in the years since then. So not a stupid question at all! It's good that you are being followed with ultrasound in addition to mammography. Although my cancer is lobular, which does not always show up on a mammogram, It seems odd that it was missed on the June ultrasound because it was plainly visible (even to me, when I asked to see it) during the ultrasound-guided biopsy several weeks ago. I could be wrong, but it seemed that the technician stopped the exam in June as soon as she landed on a cyst (which was still there next to the cancer in the recent exam).

Sandibeach, wow, what a journey you've been on. My heart goes out to you. I can relate to the two ways of seeing the current situation -- the possibility that chemo might have prevented it vs. "10 years of wonderful treatment free life." I am grateful for the treatment-free interval I've had as well. Thank you for sharing your story with me and for the encouragement to keep going.

wallycat · November 2019

I'm speechless. Women are told DCIS or LCIS "isn't cancer" and here you had a mastectomy to even further mitigate your risk. Just gutwrenching.

I'm so sorry. Beesie wrote beautifully what I also feel...and the description...put back in the pool....just when we think it should get easier. My heart aches for you and I am so deeply sorry you are dealing with this.

Jons_girl · November 2019

Jody I’m so sorry about what yr going through right now.😞 My heart goes out to you. 💕🌺thank you for writing me back. There are others here I think on this forum who have had their cancer missed by ultrasound and even a few people I think where mri missed their cancer. So I have learned from this forum that no one diagnostic is the best. I do think tho that mri is one of the best diagnostics.

Thank you again for your reply.

JodyJ · November 2019

Wallycat, thank you. After I was first diagnosed with DCIS, I had two lumpectomies without clear margins, so mastectomy was then the only option. The other breast now has a new invasive cancer rather than a recurrence. What boggles my mind is that it was discovered at stage IV. But others in this forum have similar stories.

22 years after DCIS

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