If you are not Stage IV but have questions, you may post here
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So 😔 rip chrissy
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hi ladies.
Freaking out. My mom is almost 2 years out from diagnosis and the other day she found what looks like a bug bite on her breast tissue
No lump and not hard but I'm still freaking out to the point where i can't eat or sleep. She just saw her breast surgeon for a clinical breast exam that she gets done every 4 months.
I'm making an appt for her to see her breast surgeon but i can't stop thinking it might be stage iv
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farmerlucy...so sad about chrissyb. Thank-you for letting us know. She was a real treasure on these boards.
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ucfknights, I am sorry no one is responding and I guess it may be good news since no one had a similar case. I do have a bruise where the cancer was found but that's it. Maybe it is a bug bite.
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knights I am with lily here, try not to stress, it could be just a bite. So hard not to freak out. Every thing makes you worry it’s cancer. You have done the right thing by booking to see the doctor. Good luck x
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Had my bone scan today.
I feel really fortunate to have amazing free care available at a very beautiful cancer hospital here in Melbourne. It was a bit weird as I also work in pastoral care here. My role was as a patient today😁 I think I did good job.
Anyway the nurse came out from room and said my hips look inflamed so they did extra close up scans and then a ct scan of the area as well. I didn't know the bone scan machine could do that!
I felt like they took great care not ro miss anything and give me a super accurate dx.
I don't feel in my gut that this is anything but
Non cancer stuff.
Still will be great when report is in.
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ucfknights
Is there a reason that your mother can't handle medical decisions on her own and needs you to make her appointments? Are you her full-time caregiver? Some of us are uncomfortable discussing a third party without knowing if they have turned over their decisions to the person posting.
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Astrid, how nice that they were so thorough with your scan. I had one at the beginning of my Stage IV diagnosis where I had an X-ray of my hips/femur and then had gone upstairs to see my MO. While I was checking out, they called my mobile phone to say they wanted me back downstairs for some more views. It was kind of funny to be sitting in Scripps Clinic and get a call on my phone from Scripps Clinic. It was nice to walk right back downstairs and not be halfway home or all of the way home and get the "come back right now" call.
Will look forward to your update.
Carol
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Hi Everyone,
I have been a lurker in these threads for quite some time but have never posted. I have been so grateful for all of the wisdom and kindness that has been spread through this site.
I was diagnosed in 2019 and had a bilateral mastectomy. It was a bit of a whirlwind. They ended up finding multiple tumors with the largest one being an incidental finding (2.4cm). In total 3 tumors, all about 2 cm each plus macro-metastases. in the nodes. My mamaprint was low so no Chemo but radiation.
Recently I have been having severe bone pain in my hips. A deep pain that wakes me up at night for the past two months. It doesn't bother me terribly during the day but oy the night is bad. My oncologist ordered a CT scan. The results came back on Monday that I have 5 sclerotic foci lesions in my pelvis and lower spine. The exact language was "sclerotic foci with the spine and pelvic bones, concerning for metastatic disease" My oncologist just ordered a PET for today. I am quite nervous about what these results might mean. She reviewed a PET that was done just after my mastectomy by my prior doctor. That doctor did not mention these to me. It appears that the change in size is not significant between the two scans. A CT many years before (2009) for unrelated issues showed a completely clear pelvis and spine. The radiologist mentioned that it is not impossible to have same image showing no change but that the pain could be indicating that it is now active.
I am of course nervous for what this might mean. I would love to hear from others who have many be been on a similar path.
Many thanks!
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hi happy2beme,
Of course you are worried.
A very anxious time for you!
I admit I was surprised...no chemo even with 5 pos nodes? I don't understand this oncotype/mamma print stuff.
They didn't have it when I was 1st dx'd 2002.
Then it seems they also knew of some lesions from your 1st pet and still only rads?
I mean why wouldn't they hit it with everything in the 1st instance?
Can anyone explain this? I fee it is reckless.
If you have spread to the nodes, do chemo...surely? I am going to ask my onco about this and her opinion when I see her. I think it is outrageous and wrong.
I looked up sclerotic which means rigid.
Anyway.here you are now HTBM, and we are here waiting with you. I am sending love and best wishes for you.
Astrid.💖🙏
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Thankyou dear Carol for your beautiful response. It means a lot to me.
Will post when I know.
Astrid.
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Hi Ladies, I have couple of questions:
1. Does x-ray show metastasis that is spread to the bone?
2. Once someone has BMX, how can cancer come back to the breast as recurance? There is no breast, what are the signs?
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Hi Lilly,
1) xray *can* show mets to the bone but some mets may not show up so it's generally not used if mets are suspected (nuclear bone scan would be more likely). However when I had hip joint pain the first test ordered was an xray.
2) So two things: one is that usually not all tissue is taken. Surgeons try but might miss a tiny bit. Skin sparing mastectomies & nipple sparing obviously leave tissue behind but even in a surgery where the surgeon tries to take everything, small bits might be missed. It's hard to tell sometimes where breast tissue ends. Secondly, breast cancer recurrence can occur anywhere in the body, not just in the breast, because cancer cells are small and can spread through blood & lymph. Both of these fluids flow all around the body constantly. There are numerous theories on the bio mechanisms of recurrence but one prominent theory is that at time of diagnosis, some cells have already escaped but they're too small to detect. They might float around the body until they connect with some tissue where they can grow and invade and eventually become large enough to be detected.
eta: there was a recent thread about what a localized recurrence post mx might look like https://community.breastcancer.org/forum/105/topic...
for signs of metastatic spread; BCO article includes signs & symptoms https://www.breastcancer.org/symptoms/types/recur_...
These info sheets explain it very well (from UK ABCDiagnosis) for IDC https://www.abcdiagnosis.co.uk/wp-content/uploads/...
& for ILC https://www.abcdiagnosis.co.uk/wp-content/uploads/...
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happy2beme, sorry you're having this scare. Let us know what your oncologist says when the PET results are in. Hang in there. Hoping for a benign diagnosis for you. Imaging of mets is a complicated issue. We hardly ever use PET here and my MO ordered nuclear bone scans to rule out bone mets when I was first dx with metastatic disease...but oncologists have their own preferences. I hope your scans provide some clarity soon!
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Moth, thank you so much. My question regarding local recurrence to the breast was unclear for me. I actually asked BS before she performed BMX in 2019 and she said that she will remove the breast as an organ. That made me think that no tissue was left behind but you are right about skin and nipple.
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LillyisHere, I can say from personal experience that a local recurrence after a mastectomy can present in a few different ways. The cancer can come back in the skin, on the chest wall, or in the lymph nodes around the area where the breast used to be. I had all three of those things happen.
Also, as Moth correctly pointed out, during a mastectomy some breast tissue is left behind. It is not possible for the surgeon to remove every last cell of breast tissue, even in non-nipple or skin sparing mastectomy procedures. Think of it more as a spectrum: a lumpectomy leaves most the breast tissue, a mastectomy takes most the breast tissue.
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happy2beme, I like your username. Keep us posted. It's scary for sure. Sending strength and hugs.
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LilyWasHere - Recurrence or a new cancer. It seems very murky. Maybe overconfidence in the success of treatment leads to a conclusion that it must be a new cancer vs recurrence. My oncologist said there was no way to really know since cancer mutates so much. I'm curious what your oncologist says. It is BC #3 for me, and oncologist thinks each is a """new"""" cancer rather than recurrence. 7 years between the first two, both on left. No symptoms, mamogram with followup imagery found both. 3 years between cancer #2 on left and cancer #3 on right (after a bi-lateral). The "symptom" was a swollen right arm. Ultra sound at urgent care for possible blood clot. No clot but lots of fluid. Eventually Dx'd as cancer, again. Even with a bilateral, some breast tissue remains. The R-breast was tested/sampled for cancer after removal, none found. After BC #3 oncologist had genetic panel specific to BC, over 20 mutations looked for, none found.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. No symptoms, found with mamogram and followup imagery.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Started anastrozole, joint issues immediately. Stopped. Afer joints cleared up started tamoxifen. No symptoms,found with mamogram and followup imagery. PET showed no metstatis.
2019 ER+ R-axilla. Right arm swollen, clot suspected. But turned out to be tumor causing lymphedema. Taking Ibrance and Arimidex. CTs seem confusing.
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Thank you, Ladies. I had my physical today, the first one since my diagnosis and also with a new PCP. I have implants under the muscle and I had skin and nipple-sparing BMX. PCP checked the breast to look for lumps and I didn't want to say anything that ILC doesn't create any lumps and it is just a waste of time. Now, I wonder what are the signs of ILC local recurrence in the skin, the muscle under the skin, or lymph nodes. I want to know what to look for. My DH read somewhere that only 12% of recurrence cases are found from the doctor, the rest are caught from patients themselves. MO told me after BMX that I don't need mammograms since I no longer have breast.
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LillyisHere, it is correct that you would not get mammograms. If there is anything of concern, the doctor may order an MRI with contrast. Anything of concern on the skin or lymph nodes can usually be checked with an ultrasound and biopsy or fine needle aspiration. I found my local recurrences myself, every time. Are you having symptoms you are worried about?
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thank you so much!
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The only local symptom I am having so far is that where the cancer was located and a brutal biopsy was done, yes 4 hr biopsy where I was poked many times created a large hematoma. The area looks dark like a bruise. It is been 18 months since the biopsy was done and 15 months since the breast was removed. I don't see any reason for a bruise to show up right on the same spot.
Also, it is been several months I feel a spot on my sacrum that keeps hurting but I'm not sure because of the exercise or something else. I will also have a US in my abdomen area. Probably it is nothing and I have a feeling that one of SE of AI that is not written in the books is that makes the nerves over-reactive towards pains and aches. My theory this one
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Thank you Astrid. Yes, so many concerns. I will have to wait till my appt on Tueday. I sure hope I get some good answers and a path forward.
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H2BMe, here's hoping for answrs and happy results.
Lilly, hi!
I had ILC in right mx breast in 2012. It was a year out from silicone implant ops.
I thought for awhile it was necrotic tissue. Rock hard lumpy areas. Didn't feel like the ductal lumps I'd had before.
Also,wasn't like everyone's description of 'sheet like' stuff. was really unevem jagged, pretty large areas.
I was shocked it was ILC. They diagnosed with u/sound then core biopsy like buttons machine described. Good luck with this.
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hi, ladies!
how did you know you had or suspected mets? feeling vulnerable amd sad0 -
ucfknights, in looking at your emtire posting history, it seems that consistently you are much more anxious about your mom’s situation than she is, and often not in proportion to what the realistic situation is. Why are you concerned
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Thank you Astrid and Buttonsmachine.
Astrid, did the color of the breast where ILC was found changed? Where you able to see any changes with the naked eye? Also, what happened after ILC was found?
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ucfknights, a bug bite appearance might be nothing . Or it might be something. Generally speaking symptoms which persist for 2-3 weeks need investigation.
Does your mom's cancer agency have counselling resources? They're usually available to family members and cargeivers. Your anxiety about her health is troubling you...i think you need help addressing it so you can approach with more peace and calm.
Best wishes
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With my recurrences, there were lasting, persistent, and increasing changes.
It could be a new pain, a new area of skin redness, or a new lump. It might start out as a subtle change, but the key here is that when it's cancer it does not go away. I cannot emphasize that enough. We all have weird body things that come and go, but if you have an unexplained change that persists over several weeks, and even slowly worsens, it needs to be checked out.
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