Things I never knew about breast cancer
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Artista, thanks! The thing is, my doctors ARE good and smart etc. for the most part. But even the smartest doctor in the world won't know everything. My breast surgeon (not the MO) comes close though. That man is a walking encyclopedia of breast cancer. The MO is an excellent MO and a nice man. What does that mean? It means he is highly skilled at poisoning people to within an inch of their lives without actually killing them. He is also really good at managing and reducing the SEs of chemo treatment. That is why I brought my husband to him.
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"It means he is highly skilled at poisoning people to within an inch of their lives without actually killing them."
Haha! Funny but scary at the same time. oy.
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only had menstrual cycle before 12 nothing else applies to me dx at age 31
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I learned that there is a lot of waiting when you have BC. Waiting for test results drives me crazy.
I've met so many amazing people. The medical staff, friends, family, people who truly care. Our BCO sisters.
I've learned so many things since my dx. To expect the unexpected, to enjoy "now", and try to focus on the good bits of life instead of moaning about all of the crappy stuff.
And I've learned how F%($*%(% up BC really is.
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I learned that BC doesn't have to be the inflammatory variety to cause itching, after my cancer was missed for five years because no one would take my complaints about the itching seriously when my tumor didn't show up on any mammograms. It couldn't be felt until it grew to over 3cm and finally stood out from the normally lumpy landscape of my very dense and fibrous breasts, so that's another thing I learned. You can have a big ol' cancerous lump and not be able to feel it, even when you are checking yourself nearly daily out of concern for the damn itching. I also learned that many, if not most, doctors are so invested in what they think they know that they will continue to deny an obvious connection, even after I told them that I could tell it was the lump that was itching, once it was big enough to feel.
I learned that due to the extreme density of my breasts, and having an undiagnosed problem, I should have been given an MRI at least 4 years before my diagnosis. I also learned too late that you might have to ask for an MRI or other tests when they are not offered, assuming you know there is a reason to ask, which I didn't since everyone (even Dr. Google) kept telling me I was crazy.
Veronica31, my tumor was also still mobile at 3.2 cm, and from that I learned that more than one rare thing can happen to one person.
On a positive note, I also learned I'm a lot stronger than I thought I was.
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Hi Solfeo, Yes there are so many variables with BC. You have the one where you have the mammo, u/s and biopsy and then the treatments and yahoo everything is great and you are 'cancer free"??????????????????????? and bring on the pink +++++++++++++++++ and then you have the other type which doesn't 'fit' into the main stream BC and that when you really, really need to learn how to advocate for yourself especially if you are stage 1 because so many doctors think you are 'cured'. Best wishes to everyone. Love Muriel
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I didn't remember this: Nancy Reagan was a breast cancer survivor
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Things I learned:
Radiation can really suck. I knew people who had sailed through it and so I expected that, but when on week 3 out of 7, the skin slid off my nipple, I realized I was the exception. Open, bleeding sores for a whole month, and skin ripped off every time I took off my bra, even if I tried those non adhesive gauze pads. In the meantime, I was going to work, and I was frequently hearing how lucky I was that I didn't need chemo. I wasn't feeling lucky and wanted to rip off my clothes to show what I was going through.
Most people think you are "cured" after your initial treatment. They do not understand that breast cancer is insidious and can recur whenever it feels like it. As I noted in a thread I started tonight, I am five years out from treatment for Stage 1 IDC, but I am currently waiting for the results of a biopsy for a complex cystic area right under the original surgical bed. Fortunately, I realized this fact early on so I have not been proceeding blithely assuming I am cured.
Okay, getting personal here, but breast cancer can really affect your sex life. After Tamoxifen, Aromasin and hysterectomy/bilateral salpingo-oophrectomey (2012) between vaginal atrophy and very minimal libido, sex is no longer high on my list of fun times, which sometimes creates issues in my marriage.
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I did not know that breast lymphedema can have the same symptoms as inflammatory breast cancer. If your breast swells up, the pores stretch out, and it looks like you just took a warm shower and feels heavy a few weeks or months after your SLNB, don't google your symptoms and panic like I did. Try lymphatic massage.
I didn't know that the needle biopsy could miss.I didn't know that if you end up having a surgical excision after a discordant biopsy, and you have a "sleepy little cancer," people pretty much ignore you until you get to radiation. Even if you speak up and ask for it, there is no nurse navigator, social worker, massage therapist or anything else. You're all alone except for these boards.
I didn't know I would have dreams that God was giving me just a little more time left, and dreams that they found more cancer and dreams I can't remember but leave me waking up with grief. PTSD is a real thing.
Grateful to all the women on these boards who have had to fight so much harder than me. You are all so courageous. I hope this helps someone in the future.
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I learned that having an ever increasing inverted nipple and yearly negative mammograms FOR 4 YEARS somehow wasnt a red flag to the Dr's. I had NO idea I could ask for an ultrasound or any other test for that matter. I also have dense breasts and 5 seperate tumors (multifocal) were finally found after an ultrasound AND my surgery. The largest being 5cm. I jumped from Stage 1 to Stage 3a after my surgery. Thankfully(um....sorta) I am a Grade 1. Had the scans and all the others and nothing else was found anywhere. 4 YEARS people.
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I learnt that a lot of the information we google on breast cancer is out of date and scary.
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I've learned the following:
1. Having breast cancer 24 years ago, you still are not done and can get a new cancer. (yes had it at 31, different type, different breast)
2. Keeping a healthy weight, working out, eating right, is no guarantee not to get BC
3. Breast cancer can hurt .
4. There is no such thing as 'cured'.
5. Triple Negative, Triple Positive or a mix. We all have crappy odds at recurrence. They don't tell you that on TV in October.
6. So many women are alive and functioning and living life and have moved from early stages to stage IV.
7. Being stage III I have no where to go but up. So have to be 'happy' I'm not there yet. Never thought I'd say it. Happy to be a stage III. (at least until the next scan)
. If we let it, worry will drive you nuts. You wait and worry about :
a. biopsy results
b. initial scan results
c. staging
Is the chemo working, surgery pathology. Will I be PCR after surgery? Is it worse than they thought. ( in my case I'm already stage III and IBC, how much worse?)
then afterwards, lymphedema, radiation burns, then scanning, tests etc after treatment. It's with you the rest of your life, be it 2 years or 20.
Oh and I'm not ashamed to say it: I HATE PINK
I never thought an online community BCO would be my lifeline. Thanks Muriel for this thread.
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Hi all, I love reading all the info and experiences on BC.org. I am curious about recurrence rates. After my unilateral mx (which I got so I would not have to have chemo or rad), I saw my oncologist who told me that I am high risk 36% and that I should start chemo right away. I asked to get an Oncodx and it came back 15. I moved overseas in June of 2015. I have only had ultrasounds but I am having a mammogram on Wednesday because I am having my implant removed for Sgap Flap surgery. I am wondering who I should have believed. I have read so much and the consensus seems to be that it is really hard to believe anything. What do you think?
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Fe_princess - I don't see hormonal therapy listed in your treatments. The Oncotype DX score assumes 5 years of hormonal therapy. Are you taking anything?
Without knowing everything about your case that the oncologist took into consideration when making his recommendation it's hard to guess what was more believable. Your tumor was large and grade 2, and I see that you had your ovaries removed, which suggests you were younger and premenopausal. Those might be the reasons he concluded your risk was high. They take more factors than the Oncotype score into consideration when recommending treatment.
I had a similar diagnosis with an over 3cm tumor, but only grade 1 and a slightly lower Oncotype. Chemo was not recommended for me, but no one would have told me I shouldn't have it if I wanted it due to the size of the tumor. The choice was left up to me. With an only 2% added benefit from chemo I decided I didn't want it.
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Physical exams by 2 different doctors including a 'top oncologist" don't mean crap. If you feel like something is even SLIGHTY OFF - demand an ultrasound!!! I had 2 physical exams in 3 months and was all clear. My ultrasound showed several (turned out to be ten) cancerous lymph nodes including one 2 cm SOB that was half grown into a muscle so the surgeon even said it was probably hard to detect physically!
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Hi Solfeo, thank you for your reply. I am not on any hormone treatments. I thought the oncotype was for chemo benefits only?
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Fe_princess - There are a lot of people around here with more knowledge than I, but in my opinion you should see another oncologist as soon as possible for a different opinion. I can't imagine any MO not recommending hormonal therapy with your stats.
The purpose of the Oncotype is to identify women who will or will not benefit from chemo, but the score itself is based on your recurrence risk if you receive hormonal therapy.
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The OncotypeDX test not only predicts the likelihood of chemo's benefits outweighing or being outweighed by its risks, as well as the odds that it would be effective, but it also predicts the odds of distant recurrence, aka mets, 15 years later--both with and without chemo. But that latter prognostic score assumes that the patient will be receiving at least 5 years of endocrine therapy in the form of tamoxifen. Newer online tools also calculate the odds if the patient is postmenopausal and taking an AI instead (the odds of mets if given AI for the same period are 1-2% lower than with Tamoxifen). In my case, my recurrence odds with tamoxifen alone were quoted to me as 10%, with an AI alone slightly under 9%, with chemo +tamoxifen 8% and with chemo + AI slightly over 7%. (There’s another online tool that expresses odds not in terms of recurrence but in terms of life expectancy in general--and adding chemo would give me only a bit more than 6 extra months). Both my MO and I agreed that the recurrence risk reduction and short lifespan extension from adding chemo--given my comorbidities--was smaller than the increased risk it could cause something else (i.e. infectious &/or cardiopulmonary) that would be life-threatening and possibly kill me long before I'd have gotten mets. So I'm on 5 yrs of letrozole, expecting to be tested at 4 yrs. out to see if I'd need to be on it for 10.
But here's an unnerving fact I learned from instances of others on these boards: there is no guarantee, if you do get either a local recurrence or a new primary tumor, that its biology will be the same as your original one. It's possible to be successfully treated for a Luminal A tumor and then get a recurrence or new primary that's Luminal B or triple-neg. This is especially so if your original tumor was only moderately-ER/PR+ and weakly positive or equivocal for HER2. If you have a luminal A tumor that is, say. 75% ER/PR+ and HER2-, it has up to 25% of its cells being triple-negative; and if that HER2 status was equivocal, 25% or more of its cells being Luminal B (hormone-/HER2+). So I'm not feeling particularly cocky about dodging chemo, having had a Luminal A tumor with an Oncotype DX score of 16--my tumor was 75% ER+/97%PR+/+1 HER2, which is definitely but not overwhelmingly negative. It's possible that if I get a local recurrence or new primary, I might end up needing chemo, targeted therapy, or both. (The person who got a TN primary at the same site as her Luminal A tumor had been removed via lumpectomy & radiation had chemo the first time around due to node involvement).
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Hi ChiSandy, thank you for your reply. My estrogen was 95% and my progesterone was 90%. I am not sure how that enters into the equation. I guess I could go crazy trying to figure it out.
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Fe-Princess, my ER % was and is the same as yours. I was on Tamoxifen up until surgery for recurrence (I'd like to think it slowed it down or kept it from spreading anywhere else) then I had a laparoscopic hysterectomy in January so now I take Arimidex which is supposed to work very well - better than Tamoxifen (I sure hope so!). I take it after dinner and it doesn't seem to bother me much. A slight nausea or full feeling - but barely. Keeps me from snacking! ha! Usually gone by morning. Please do get a second opinion. Antihormonals should be in your arsenal.
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Fe-Princess, I was both 100% ER and PR positive. I had my last period 2 months before I started the tamoxifen, which is what they give to premenopausal women. Now my hormones are at menopausal levels, so if my period doesn't come back by September (official menopause is one year from last period) I will be switched to an aromatase inhibitor. Since you have had your ovaries removed an AI will likely be the first recommendation, with tamoxifen reserved as a backup plan if you can't tolerate the AIs due to side effects.
There is a lot to sort through but some things are pretty basic, and I don't think there is going to be a lot of controversy in your case regarding the need for antihormonal therapy. It's blowing my mind that the original oncologist didn't recommend it. Did you not see him to talk about a treatment plan after you received the Oncotype score? Were you not given a copy of the Oncotype report? The statistics that ChiSandy describes are in the Oncotype DX report, including the expectation that you will be taking 5 years of tamoxifen (or AIs, as she said, although it doesn't say so in the report). If you don't have a copy of that report you should request it.
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Hi Valstim52 and all the other ladies, Glad you are enjoying the thread! Its certainly becoming a good read and I am learning more and more about "Things I never knew about Breast Cancer". Still cant believe how many doctors talk about 'cure' as well as all the other media outlets. You would think that at least the doctors would realise how sneaky cancer is. Best wishes to you all Muriel
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Muriel, love this thread! It fell off my favorites list and finally found it again!
I didn't know That having your period start before age I believe 12 is one of the risk factors for BC. I started mine a little after my 9th birthday. It is it the only risk factor that I had. No family history of BC or any cancer on either side of my family
I also didn't know how important it is to be your advocate! Love my medical team but sometime my questions make them open up and share more.
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Sorry things got off track for a minute, Muriel. Didn't want to leave anyone with unanswered questions.
I learned something new last week. I had an ultrasound for a lump on my chest wall that they are telling me is fat necrosis from the surgery. I find myself not believing anything they tell me because they were wrong about the breast cancer for so long. I've learned that you never feel safe again. That's something I don't think most people understand - that you never "get over" having had breast cancer even when you are cancer free with a good prognosis.I have more to say about my current situation but I will do it on a different thread.
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Hello 7of9, I see you had a recurrence three years after the original (so sorry).but you were on Tamoxifen the whole time? I was pre-menopausal before dx. There was so much happening after my surgeries. When the onco told me I needed chemo I was floored because my oncodx came back 15. She said she did not understand it either. I came to Switzerland and was told that there was no need to take my ovaries! I am very nervous about the mammogram. I will talk to her about hormone therapy too. Thank you for all your answers.
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ChiSandy, thanks so much for your excellent explanation of the Oncotype and recurrence scores. Great job!
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ChiSandy---Thanks so much for that post about the Oncotype test and recurrence percentages. I am currently trying to decide whether to stay on Tamoxifen or switch to an AI. My stats are very similar to yours and my Oncotype score was 15. I've been on Tamoxifen for 3 years and had a total hysterectomy with ovary removal a year ago. I saw my BS yesterday and asked his thoughts and he said that since I do so well on Tamoxifen, he didn't think it was worth it to swap and possibly have greatly increased bone pain with the AI. He said blood clots were the major SE I had to worry about and my daily aspirin would help with that. I'm still really struggling with whether or not to swap. My MO basically said it was up to me and that he was comfortable with either. I found this calculator BC Treatment Outcome Calculator and after inputting my stats with different treatment scenarios, was given the exact same numbers whether it was Tamoxifen, Tamoxifen + ovarian suppression or Tamoxifen followed by AI. I don't know if this is considered a reliable calculator. Do you have links for others I could use to help me make this decision? My BS said yesterday that Tamoxifen reduces my chances of BC in my native breast by 50% and an AI reduces it by 60% but in real numbers (which he didn't explain), it's only a 1-2% difference. That's where his numbers match up to yours. I'd just love to find my exact statistics if possible.
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Hi Ladybird1234, I had NO risk factors
1. Alcohol I don't drink, never have
2. Excess weight , I am within weight averages and exercise daily
3. Menstruation before 12, I started my periods at age 16
4. No children, I have 2
5. No breastfeeding,. I fed both my babies
Just to add I have never had HRT either so just goes to show you can have everything in your favour and still get BC!!!!!!!!!!!!!!!!! Best wishes to you and everyone Love Muriel
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Things I never knew about breast cancer....as so many have mentioned, all the different types. I had only heard of stages before. That the size of the tumor means nothing, it's the aggressiveness. That cancer doesn't kill you in the breast, it's the spreading to other places that gets you. That the brain fog and PTSD symptoms in my case have been worse than the chemo and radiation. That your lifelong best friends who you thought would be with you through thick and thin disappear and don't even let you talk about it. And therefore are no longer your friends because you can't afford to have people like that in your life when every day is a struggle to find the positive. On the other hand people who you didn't think we're that close come out of the woodwork to help you. Those are the people you keep around. That there are so many of us...now I notice all the women in head scarves and wigs when I go to the store, I never really saw them before until I became one of them. I could go on forever, but I'll leave some for someone else. Getting a dog may have been the smartest thing I've done even though I wasn't sure I should do it, she makes me have to get out of bed and take care of her, plus she loves me unconditionally. I get exercise and socialize at the dog park instead of sitting home alone.
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