26 years old and just diagnosed with IDC
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Hray, I felt like you in regards to spreading...worried myself so much I have myself bone pains all over. Every team is different but I am set to start chemo on Monday and my doctor ordered everything..CT scans, bone scans, MRI (which showed thickened lymph nodes), and then US and biopsy of the suspected lymph nodes...so many necessary scans and testing but I feel better knowing where it is before I start treatment (for more accurate staging and treatment plan). I understand your fears and anxiety because the unknown is so hard. Now that all the tests are completed I feel better knowing and preparing for chemo...we are here with you, al with our own set of worries and concerns. 🙏❤️0
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Mary, I pray I can get that lucky and my doctors order all those scans. Did you have to push for them to get done
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I did tell the doctor how I had been feeling and he put me at ease and said don’t worry we are going to do all these tests...be your own advocate but I have a feeling with the type of cancer we have they will run all the test
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I think with a large TNBC tumor it is likely they will scan you. The team wants to fid out the details of your situation as much as you do so they give you the right treatment.
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hray1993 - you've gotten a lot of good advice here. I was immobilized by fear in the beginning. The best advice is to breathe and slow down. The truth is most doctors are very good and they want the best for you.
Try to avoid googling too much - it makes everything seem worse. Ativan is excellent for anxiety- I took a small dose to help me sleep at night.I didn't start to feel less fearful until I started chemo. I hated reading about how cancer makes you appreciate life more, live for today - I already did those things, thank you very much.
Did you get to the angry stage yet? Lol!
It's hard to believe right now, but you will settle down and life will go on and you'll find a strength you didn't know you had in you.
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hray 1993 Hopefully scans will come easier for you based on TNBC based on what Mary said. But she didn't mention PET. That is still the hardest to get and the probably won't do full body PET since your node biopsy came back negative. I had a very hard time accepting this also. But they did CT of chest, abdomen and pelvis, and full body bone scan, all negative. Breast MRI shows more than US and mammo in many cases especially for LCIS and DCIS. And while considered precancer, they still take it out and can make the difference between lumpectomy and mastectomy. But doesn't always show lymph node invasion unless it's large. In my case, showed much larger LCIS, but did not show anything in lymph nodes, but final surgical pathology was positive for macromets (over 2 mm) in 2 nodes. Even during surgery testing they thought it was just one node. They still consider it early stage if in less than 4 nodes. If asking questions and gathering information makes you feel better, do it. That's what I did, and still wish I knew more earlier. Although we are very different in age, I'm 54, my kids are 12 and 14, and are very hyper also, especially the girl, she's ADHD and worse than then my boy and causes me much anxiety. She beats him up all the time, lol, but also helps me more than the boy. Hard to juggle it all.
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Thanks to everyones suggestions I got a nurse navigator today and I got a full panel genetics test and a IV contrast breast MRI both set up for Monday!! The results for the genetics test won’t be in by my Jan 7 appointment but the MRI results will Be. I also was very stern with my nurse navigator after she said I wouldn’t get a full body Scan unless I had symptoms they needed to look into and I told her I didn't but still wanted the scan. She just kept asking me if I had symptoms and I had had enough so I sent her this message and she finally wrote back and said the medical oncologist wrote her back and said he would consider additional screening after meeting with me on the 7th. That's better than a no. It's been a very stressful phone call filled day but I feel very productive. Also got financial assistance with the hospital process started. I feel good about standing up for myself.
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Way to get things rolling. You can pat yourself on the back!
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JRNJ, my son is 8 and my step son is 7. My son has ADHD and he exhausts me constantly but he’s also a huge mamas boy and tries to take care of me when I’m sick. For some reason he’s got it stuck in his head that I've been so exhausted lately because my stomach hurts so I'm just letting him think that till it's time to tell them what's really going on
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Thank you! They need to have a person you can pay that can do all this stuff for you. Especially all the back and forth between insurance and doctors. That is such a huge headache
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Santanarbarian , what does FISH stand for after your triple negative in uour signatur
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hray
A coworker of mine was diagnosed at 24, 19 years before I was diagnosed. She had a 2 cm tumor, 2 positive lymph nodes, high grade, and was hormone receptor negative. She had a second Dx of DCIS in her other breast about 15 years ago. So she's 39 years out from her original diagnosis and 15 years out from her second. She remains cancer free.
The early days after diagnosis are the hardest, it does get better.
Tracy
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FISH is a more accurate HER2 test that they re-run if you come up negative on the first HER2, to verify it.
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Tracy, that’s the longest time I’ve heard of someone being cancer free that had all the odds stacked against them. That gives me so much hope! Thank you for sharing that!
MinusTwo thank you. I’ll read that
Santabarbarian, thank you for replying. Does everyone that is HER2 negative get the fish test?
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Well-done getting the genetic testing and MRI scheduled. Regarding your request for a scan -Your nurse just needs to hear some reason to order it. Now think. Have you perhaps had some back pain ? Abdominal pain? Be sure to mention anything you might remember. 😉
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I'm going to meet my care team on 12/31. So far they have only scheduled another ultrasound and biopsy because they are concerned about some lymph node involvement. I will keep up with your posts and your journey! It will be interesting to see how different or similar our testing and treatments are.
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hray, the FISH test is usually done when IHC HER2 testing results are equivocal, not when the IHC test has come back negative. See link below from ACS.
Breast Cancer HER2 Status
- If the IHC result is 0 or
1+, the cancer is considered HER2-negative. These cancers do not
respond to treatment with drugs that target HER2. - If the IHC result is 3+, the
cancer is HER2-positive. These cancers are usually treated with
drugs that target HER2. - If the IHC result is 2+, the
HER2 status of the tumor is not clear and is called "equivocal."
This means that the HER2 status needs to be tested with FISH to clarify
the result.
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With regard to the full body scan, I completely understand why you want the PET and I hope that your MO agrees gets it scheduled. However you should be aware that the reason why PETs are often not prescribed until the patient has symptoms is because, like all diagnostic modalities, PET scans do not see the smallest tumors. According to the NCI, (Molecular and Nuclear Imaging), "PET scans are more accurate in detecting larger and more aggressive tumors than they are in locating tumors that are smaller than 8 mm a pinky nail (or half of a thumb nail) and/or less aggressive cancers." One study I've read (Limits of Tumor Detectability in Nuclear Medicine and PET), did find that PETs could detect smaller (but still not very small) tumors: "Modern clinical PET scanners have a resolution limit of 4 mm". In addition to the risk of missing a small tumor, PET scans also present a significant risk of false positives, in that the scan might 'see' something that is totally benign, setting off a chain of further testing. If you do a search on "PET scan false positives", you will find dozens of studies, although most are not specific to breast cancer.
Therefore the reasons why many MOs won't order a PET scan without the patient presenting symptoms are because negative results might provide a false sense of security, leading the patient to dismiss small symptoms that show up afterwards, and because positive results might be a false positive, leading to unnecessary biopsies and anxiety. That said, I think your case, with your young age and relatively large tumor, is exactly the type of situation where a PET scan is called for as part of the diagnostic/staging process.
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hray, first I'm sorry you had to.join us but glad u found us. And good for you in advocating for yourself!! Good job. Keep pushing for the scans. I often wonder if providers really understand how you getting needed testing also helps your mental health by decreasing the worry a little bit. None of knows what the future holds but making decisions that are best for you help you to move forward. You are a strong young woman. There will always be support here. Sending you best wishes. And Shetland wink wink..I'm sure hray has had some discomfort she can recall to solidify her chances of getting the scans she wants.
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Shetland Pony, I do have back pain constantly. I also have hip pain that's been worse the past few weeks. But saying that, I messed mu back and hips up when I was 14 cheerleading so I've always had back pain constantly. I did goto the Chiropractor when it happened and had to have everything readjusted. My back was thrown off and my hips, one sat higher than the other from my cheerleading accident. The chiropractor fixed them and then I got pregnant when I was 18 and it all got messed up again and I haven't been back to have it readjusted. My hip pain never really bothered me but the past few weeks it has been. I've tried to stretch it out but it never seems to help. I'm almost positive all this is from my cheerleading accident but if it would help to get the test I could tell her about it. I've also had an impacted colon multiple times over the past 3 years. I've had extreme fatigue for the past 3 years. To where I never feel like I really get any sleep no matter how much I sleep. I'm exhausted every second of every day and it was so bad 3 years ago when it started that I couldn't even make it 4 hours through work without having to take a nap on my lunch break. I also lost 40 pounds for no reason during the time it started. I've been to 4 different doctors for it and had tons of blood work done and no one can figure anything out for it. Everyone made me feel crazy because they would run all these tests and get no answers and tell me I was fine but I clearly wasn't. A 26 year old, 23 at the time should not be THIS EXHAUSTED constantly. So I've just dealt with it the best I can but now I'm convinced that this cancer has been growing during that time and that's why I've been so exhausted all these years.
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dysonsphere, I will keep up with yours as well. Do you have a thread where you’re posting everything to so I can add it to my favorites?
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hray Ditto Shetlandpony. You need a symptom. It's not the drs fault necessarily it's the insurance companies causing this travesty. The dr will need to fight them and needs justification. I had recurring pain in my side and arm. I think the dr told them ribs too. Brain Mets are rare which is why they won't do head. I had to fight my dr even with symptoms. I was so pissed. Her trainee was like sounds like a herneated disk to me. They were cancer related because they went away after surgery. Don't give to much info on past chronic pain just say you have pain in hip and back. it could also be cancer pressing on a nerve reaking havoc which I think was my issue
My 14 yo boy was total mommas boy. Cuddled every night til 13 when the annoying teenager switch went off. Still a great compliant shy academic kid but very argumentative and ocd like me. ADHD 12 yo Daughter is funny and crazy and trouble with a capital T not like me or sonat all. Many calls from school.
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Shetland pony, just looked up symptoms and y’all make think I’m just making this all up but I swear I’m not. I’ve dealt with all this for so long but every doctor keeps telling me I’m fine so I quit going and just try to deal with it.I saw one of the symptoms was numbness. I can’t recall how long it’s been happening, at least a few months, but when I shave my legs and I shave right above my kneecap to the left, it’s always numb. It feels like it's asleep honestly. It's tingly like when a part of your body is asleep. I didn't know why it was happening so I just kind of ignore it after I say that's so weird every time lol but idk if that could be a symptom or if it's just another weird thing my body does. I'm tired of having all these random problems and doctors keep telling me I'm fine or think I'm just making it all up so I hate to even mention it but if it's worth mentioning I will. I just don't want them to think I'm making it all up because I'm not.
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Though your back issues preceeded the lump, I would mention them and the numb area to your team. My approach is I tell my docs everything odd or new that crops up. For example, I had a weird "ovulation" feeling in my left ovary and when I went to my OBGyn appt I told her. Knowing I am a cancer survivor, she said, "lets just take a look with an ultrasound" and brought the machine in. Uterus and both ovaries were fine and normal, but I am glad I spoke up and she checked.
Even if these pains have nothing to do w cancer, they still might indicate a lot of inflammation which has a bearing on the development of cancer, and which might be addressed through diet and other anti inflammatory strategies. I had hip pain prior to treatment (I attibuted mine to aging) but it is now gone-- the anti inflammation diet I have been following for cancer had the sidebar benefit of knocking out those minor aches I thought I had to live with.
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what diet were you on? Did your doctors put you on it? Okay so I should tell her about the back pain, hip pain, and numbness in my leg, right
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You can google "anti inflammatory diet." It's primarily produce, nuts and seeds, and whole grains and legumes.... w/ some animal foods, favoring cold water fish, and avoiding processed foods/ junk foods/cured meats, etc. It's pretty universally-supported by doctors as a classic 'healthy' diet. I was pretty healthy in my eating habits before getting BC but my diet went to the next level when I cut the booze, sugar, and white flour out. And yes in my case it was recommended. (Of course, the chemo nurse said "Oh eat whatever you want, milkshakes, etc if that's what you want, to keep your weight up..." So, be aware that not every medical professional is equally emphatic about a good diet-- but mine was).
I would lighten up during chemo week, and be a little bit looser... if I felt like some french fries or a piece of toast, I had them... because I had a lot of food aversions during the several days just after chemo. There's nothing quite like that Hangry feeling, when NOTHING seems appetizing....
Produce has a lot of nutrients which your body needs, which your immune system needs. The problem w empty calories is they displace all the good stuff which we need.
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this Is going to Be the hardest thing for me. I LOVE sweets and there are every few vegetables I like so I'm going to have to force myself to eat things I hate till I get used to them
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Do you like salads? That's a pretty good way to up the green leafy veggies and then add in some tomato, sprouts, etc to your salad. Or soups... split pea, minestrone, chili... all those can be veggie-rich choices. Carrot or cucumber sticks in hummus is another thing most people like. Veggies can hide in spaghetti sauce easily too.
People who don't like veggies-- try them *roasted*. IMO roasting veggies is MUCH better than steaming or boiling, for flavor. Stuff like Brussels sprouts taste totally different oven-roasted ... or grilled on BBQ is another good way for zucchini, eggplant etc. Most veggies roast in about 20+/- mins at 350. You drizzle a little olive oil over them, and toss in some fresh garlic cloves, herbs, pepper or whatever you like. So easy. I roast a big pan of assorted veggies once or twice a week and then I eat them for several days.
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Happy New Year everyone! I’ve spent the last hour reading through every message on this thread, and I want to thank all of you. The information provided has helped me to focus (I should have the results from the biopsy Friday), and I’m writing down questions to have when I meet with the doctor. I just wanted to let you all know that the support here is tremendous and I’m so glad that hray has this safety net around her. Many many good wishes for all of us in this new year!
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Amy, I’m so thankful for the ladies on this page. They have helped keep me sane. I’ll be praying for your results. I should get my results from my breast MRI tomorrow or Friday and should know if it’s spread to any lymph nodes.
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