26 years old and just diagnosed with IDC
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Beesies list is comprehensive.
With no lymphatic invasion you will likely be stage 2 due to size of tumor... depending on receptor status it can be a bit better or worse also. Stage is less important than houw you respond to treatment. High grade cancers tend to respond well to treatment.
Ideas: Ask to rush any further tests you need so you can get into treatment asap.... MRI, genetics, or similar. Ask to get chemo #1 on calendar. Ask for navigator if that exists.
Now is also the time to line up a 2nd opinion, if you want one... many people suggest a university hospital or cancer center for that.
SB
(pulled from web, for staging:)
"Stage II is divided into subcategories known as IIA and IIB.
In general, stage IIA describes invasive breast cancer in which:
- no tumor can be found in the breast, but cancer (larger than 2 millimeters [mm]) is found in 1 to 3 axillary lymph nodes (the lymph nodes under the arm) or in the lymph nodes near the breast bone (found during a sentinel node biopsy) or
- the tumor measures 2 centimeters (cm) or smaller and has spread to the axillary lymph nodes or
- the tumor is larger than 2 cm but not larger than 5 cm and has not spread to the axillary lymph nodes"
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I am at a university hospital so I’m pretty confident in them so far. Beesie had said the medical oncologist would be the one to suggest further testing but I won’t meet with her until Jan 7th so I assume tests would be done after that. I figured I’d be stage two based on the info I know so far I’m just very curious to know if it has spread to anywhere else in my body. I had an enlarged lymph node they found during biopsy so they did a biopsy on it as well and it was clear of cancer but idk about the other lymph nodes or other areas it could spread to
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hray - back to what I said earlier in this thread or one of your other threads
Don't get ahead of yourself guessing worst cases. Can't remember - so far you've had just a ULS and biopsy? Did you have an MRI? No PET or oncotype or etc??? And I think maybe you got hormone status but not HER2 yet??? Wish you could populate your diagnosis & tests to date.
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How do I add all that? I’m not sure how. I haven’t got an MRI or PET scan. Just the ultrasound and mammogram. I don’t know any of the hormone receptors ue
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hello sweetie I was 42 at diagnosis no history in family was planning our 2nd marriages found lump in shower. Things will ease up once everything in place for treatment. I had 3mo chemo before and after Lmast then we got married God sent the man of my dreams. idc stage 2 0/3 nodes 7wks rads and 5yrs on Tamoxifen. We just had our 25th wedding anniversary and Praise God I'm a 25 yr Survivor also. Hang in there.
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hray - go to my profile. type in what's relevant so far. choose to make the information public - which just means us.
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congrats on 25 years!!!
MinusTwo, okau I will
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hray1993 - not sure if this was answered but you should definitely have genetic testing. If for no other reason, for your children. Since you are so young (to get BC) I'd think it would be covered.
Regarding insurance coverage, I have a major carrier and i opted for bmx against my first BS advice and they covered it. I asked the nurse navigator (hopefully you'll get one of these assigned to you. They're sent from heaven) and she said - the insurance company can't deny you a bmx once you have a BC diagnosis. I wouldn't be shocked if there are carriers who wont cover it, but I don't think that's the norm. Per US legislation, if insurance covers mastectomy they must cover reconstruction. Again - I'm sure some insurance companies have found loopholes to this, so ask, but hopefully insurance will be a non-issue.
Now I've definitely heard of hospitals who wont remove a "healthy" breast (if cancer is only in one breast) per hospital policy, so you should ask and then find a different hospital/team. Most hospitals will allow prophylactic mastectomies for those who opt to do that.
Beet of luck to you today! Bring someone with you to take notes if possible.
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HopeWins, that’s so helpful! I have blue cross blue shield so hopefully they cover it. I also found out from a friends mom that had breast cancer that my state has a breast cancer/cervical cancer insurance as well for if you get diagnosed. She said the doctor will help me sign up for it. So maybe if my insurance doesn’t cover it then the breast cancer insurance will. Keep your fingers crossed I can figure out my hormone receptor status today!
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hray, I think your friend has misunderstood what this program is:
Purpose
Through the NBCCEDP, CDC helps low-income, uninsured, and underinsured women gain access to timely breast and cervical cancer screening, diagnostic, and treatment services. NBCCEDP also provides patient navigation services to help women overcome barriers and get timely access to quality care.
In addition to funding screening and diagnostic services for eligible women, the NBCCEDP focuses not only on the behavior choices of individuals, but also on factors that influence those choices at the interpersonal, organizational, community, and policy levels. Therefore, the NBCCEDP supports use of population-based approaches to improve systems that increase high-quality breast and cervical cancer screening
You have to meet low income qualifications AND BE DIAGNOSED THROUGH THE PROGRAM to receive services, essentially through Medicaid. It is really unlikely this will supplement your BC/BS.
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Oh okay That makes sense Maybe I can get approved for charity care
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Since you have already been diagnosed outside this program and have insurance it is not likely that you qualify
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I found out receptor status. Estrogen was only 5% positive. Progesterone was only 20% positive and HER2 was negative. They said since the estrogen and progesterone were so weakly positive it will probably be treated like triple negative
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hray, being treated a triple negative, along with your age and the tumor size, means that chemo will definitely be part of the treatment plan. It also means that you likely won't have the Oncotype test done, although since you have a bit of ER and PR, your MO might choose to send in the sample to see if their testing provides any different results - quite often the Oncotype results for ER and PR are different than the staining done through pathology.
That said, when the results are different, most often the Oncotype results are lower, which would confirm triple negative status. And generally when there is a discrepancy, from a treatment standpoint the pathology staining overrides the Oncotype ER/PR findings.
Sorry if this is confusing but I'm trying to think of all the possibilities ahead for you.
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Are you saying there’s a possibility they might treat it differently or saying that it would just confirm triple negative
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It could be either.
If the Oncotype test is done and it shows both a higher ER and/or PR %, and an intermediate score (I suspect a low score is virtually impossible with your pathology), it could mean a different chemo regimen is proposed, along with a recommendation that you take endocrine therapy (Tamoxifen). That's unlikely but possible.
It's more likely that the Oncotype test will confirm the low ER/PR or triple negative status and will result in a high score, leading to a treatment plan that would be the same as for a triple negative diagnosis.
And if the MO looks at your pathology and decides that it's best to treat this as a triple negative cancer, it's even more likely that he/she won't send for the Oncotype test, since it is only done on hormone positive cancers.
Just presenting all the possibilities.
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Thank you that explains it much better! You are always so knowledgeable. Do you do this for a living
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Beesie is, no joke, a treasure here. I always, always learn from her posts.
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edj, I do too! I always get so excited when I see her name on my comments. I know I’m about to read the real deal about what’s going on lol
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Thanks! 😊
Nope, I don't do this for a living. But I'm a research junkie, and through school and my jobs, I've spent decades digging through research studies or setting them up myself - none medical, but I'm pretty comfortable reading research studies. When I was diagnosed, my natural inclination was to dig into the research so I learned quite a bit about things related to my own breast history and diagnosis. I've been hanging out here for a long time now, on and off for 14 years, and there have been other topics that have interested me that I've read up on. But there is a lot that I don't know anything about and I stay away from those topics, radiation and chemo protocols being a couple of examples. I'm retired, so I have the time (well, sometimes) and I'm happy if I can provide someone with information that helps them talk to their doctors.
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you are the best!! What kind of breast cancer did you have if you don’t mind me asking
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Early stage with a very small tumor. But lots of DCIS (non-invasive) that necessitated a MX.
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well I’m glad you seem to be doing good now. You are so valuable to so many people on here
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Can anyone tell me, when I go for my consultation with my breast care team Jan 7 will they do another ultrasound to measure the tumor again?
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Highly unlikely.
Have you had an MRI? If not, that might be recommended. Some surgeons insist on an MRI prior to surgery whereas others don't. If neoadjuvant chemo is being considered, an MRI might be done to try to get a better handle on anything that might be going on in either breast.
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No I haven’t had an MRI. Just trying to figure out what all I need to be prepared to ask about
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hray I am proud of your attitude of informing yourself. That will stand you in very good stead. Bravo.
They will tell you the basics of what they see going on/ what they recommend. You can ask for written test results, which I advise. You can also ask for clarification of anything that is recommended.....Qs like : what are the short and long term side effects of a treatment, what are possible alternatives to this treatment, if any?, pros and cons? how much does the recommended treatment improve survival odds? -- so you can evaluate the choices you have before you and feel informed and comfortable with what you elect to do.
Know you have a right to a second opinion if there is any doubt or if the doctor does not feel like a great fit.
For examples of how being clearly informed helped me: a few people who take one of my chemo drugs do not get their hair back. My doctor informed me of this risk, but then explained the other alternative drug he could recommend to kill my cancer risked *heart damage*. Of the two, I decided to go with maybe-baldness over maybe-heart damage. I felt at peace, given the relative importance to my lifestyle and happiness.. Also, I had chemo before surgery. I advocated for myself when my surgeon had in mind to take out all my lymph nodes, and I got her to agree to a sampling of nodes instead by telling her I would get a 2nd surgery to remove them all if she found any remaining cancer. She agreed... and I was cancer free, so I kept all but 4 nodes. Glad I asked!!!
They may want an MRI, especially if your breasts were at all hard to image... dense... because it provides another "look" at what is going on which might clarify the picture. In my case I already had lymphatic invasion per mammogram -- so they were also checking to make sure it had not gone further than that.
You might ask if your facility has an integrative medicine dept, as there are many integrative things which lessen side effects, assist outcomes, and keep you feeling more well. Find out about any other resources they may provide for patients, or their families.
You might ask about scheduling your chemo day in light of your young child, your job, etc. Time it to have your most "down" post chemo days occur when they are least disruptive, like you have some help around or can sleep. For me day 3/4 after my chemo was the crash-into-bed day and by day 5/6 I was on the upswing. Consider this practical aspect.
You can also ask a lot of Qs of your navigator as they come up. I found my navigator was by far the fastest responder and she knew a lot.
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Thank you so much for all that information. It is so helpful! I’ll have to write it down. Do you mind if I ask which chemo drug has the permanent hair loss and which had the heart damage side effect? Heart problems already run in my family so it’s probably best I stay clear of that one. I’m triple negative so just from what I’ve read I have a feeling I’ll be doing the red devil chemo but I don’t know that for sure and haven’t studied up much on drugs yet. I’m also trying to research as much as I can on double mastectomy so I can Be prepared when that conversation comes up in case they recommend lumpectomy. I’d much rather have the double for peace of mind
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How does everyone keep from overwhelming their family? My fiancé gets upset because he says he wishes he could get my mind off of it but I can’t help it. Right now it’s all I can think about. I have so many more thoughts going through my head than what I even tell him. I try to only tell him facts but then when I do he says he can’t get my mind off of it. Then in the next breath tells me to not feel like I'm alone because I'm not. So I try to talk about what I'm feeling and it seems like it just makes him so angry because he can't fix it. So then I feel alone anyways. I know he's scared and processing it in his way. He won't find a support group. He just closes up when he deals with something. How do I keep from wanting to talk to him about things so he doesn't think it's all I think about. Because it is and I can't help that but talking to him about it doesn't do anything but make him close down and get upset that he can't get my mind off of it. Do I just stick to only talking to people on this page? My mom doesn't really talk about it either. All my family say they are there for me but no one wants to talk about it so I end up feeling alone. I want to help my fiancé but it seems like the best way to help him is to just not talk to him about it that way he at least feels like I'm not thinking about it even though I am. Someone please give me some advice to help my family.
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It is a difficult balance. Only someone who has been diagnosed really gets it. You are in the worst part right now since you are waiting for more information. Try to let them know you are worried, but also try to keep busy with other things as much as possible. Reading here helps, but you may also want to reach out to the American Cancer Society to talk to someone, especially if they can connect you to someone young like you. Seeking counseling might be a good idea, as well. You could also let people know that for you the best way to process this is talking about it and that you don’t expect them to fix it, but you do need someone to listen.0
