Reluctant Newbie
Hi,
I just got diagnosed a few days ago after my biopsy/lumpectomy. 9mm, ER/PR negative, HER2 positive, stage 1, grade 3, high percentage of cells actively dividing (I think it was 74%?) Will see the surgeon Monday for a long consult. In our short consult she said the recommended treatment will be more surgery, lymph node biopsy, radiation, chemo, and targeted therapy (Probably herceptin). Yeah, sucks big time. I'm doing lots of research online. Really don't like the whole concept of poisoning my whole body with chemo. My eyeballs are melting from too much time on the computer, so I will quickly mention that I I'll be looking into complementary and alternative treatments in addition to researching traditional methods.
Comments
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Yeah, I didn't particularly want to take poison either, but I have even less faith in alternative treatments. My cancer is luminal B, which is more aggressive and often acts more like triple negative. For me? There really was no question --chemo gave me the best shot at cure. I don't want to look back 5 years from now and kick myself for not giving it all I've got.
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Hi NCBeachGir, and welcome to Breastcancer.org!
There are two forums for Alternative Medicine and Complementary and Holistic Medicine and Treatment that you may find interesting if you want to discuss and learn from other member's experiences on this kind of treatments.
Please note that alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.
We're very glad you've found us! Come back and let us know how it goes at your surgeon's appointment!
Best,
The Mods
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Hi. Reluctant Newbie here too. I was told on Thursday that I have this too! I am beyond terrified. I have to have an MRI on the 13th. I don't know the extent of how bad I am so my moods run between being ok to my blood running cold. I am so worried this has spread all over.
I do know I have two lumps. One is less than 1cm and the other is 1.5cm. I only found the bigger one. I was told that it was being fed by oestrogen. I am still in shock because I have no other symptoms or history. In the booklet they gave me it says most don't need an MRI so now I'm wondering why I do?
I don't know how I will cope with all this. I've felt I'll ever since. I am floored
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We have all been reluctant....
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I had stage 1, 1.3 cm cancer and I had an MRI. I wouldn't read that much into it. I believe mine was more due to extremely dense breasts. They were able to check both breasts and lymph nodes and they didn't find anything additional.
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NCBeachGirl,
HER2+ cancer is pretty aggressive. In the past, only 40% of HER2+ breast cancer patients made it to five years after diagnosis. Today, thanks to targeted therapies like Herceptin and Perjeta, over 90% of women with early stage HER2+ cancer make it to five years. Because your lump is smaller than 1 cm., you may be able to get away with "chemo lite" or Taxol + Herceptin. Yes, chemo isn't fun, but Herceptin is usually given with a taxane like Taxol or Taxotere. There are some women who have chosen alternative treatments on BCO.org, but it's interesting to note that very, very few of them are HER2+ ((Hugs)) and best wishes!
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Hi Reluctant Newbie:
Love your handle name. It sums us all up pretty nicely.
I am so sorry you are here and dealing with this. It really is scary, but once you have a plan in place on how to tackle this and are moving forward, the terror that can overcome you will subside.
I understand feeling that you are poisoning your body with chemo - you are actually. But your body is resilient and wants to heal so I believe it can handle it and recover. It does actually. 13 years ago I had aggressive chemo, hormone therapy and I am healthy and energetic today. People tell me I look 10 years younger than my actual age. They have no idea what I have been through. I did treat myself well and changed my whole diet and lifestyle after chemo with complementary treatments and therapies. This helped me heal I believe.
I am now facing a new breast cancer, not a recurrance. I find out on Wednesday if I need more chemo. It is up in the air right now. I again have those feelings of "not more poison". But, I did it once, I can do it again if need be.
wallan
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With grade 3 chemo is your best option of killing them. They are dividing quick. I think all of us who have had to do chemo were reluctant at first. From my understanding chemo works best when the cancer is dividing. Hugs...
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Hi again, everyone.
Thanks for the welcome and replies. I had a long appointment with the surgeon on Monday. I'd been on the internet all weekend, so she didn't tell me a whole lot I didn't already know. Will go for surgery in about 2 weeks to widen the margins of the lumpectomy and do a sentinel node biopsy. While we're waiting for the nodes to be frozen and checked, my gynecologist will remove a cervical polyp which had darn well better be benign! Then if they find cells in the sentinel nodes, they'll remove the rest of them.
My surgeon explained my prognosis in a variety of scenarios. It's possible I'll just need surgery and radiation, but my gut feeling is they'll recommend chemo because of the grade 3, high rate of cell division, HER2+ business. The way the surgeon explained it, it's best to hit the cancer hard, and the recurrence rate will be lower. She said if it recurs, it's either much harder to treat or incurable, I can't remember exactly, but it made sense to do a down-and-dirty approach. I'd read things to that effect online, as well, that the recurring cancer is often treatment resistant.
I'll be seeing an oncologist after the node biopsy.
As for alternative therapy, I don't have the luxury of time on my side to do the research, tho I'm sure there are ways to cure cancer naturally, and I don't have the money to pay out-of-pocket for alternative treatment. So I'll check out complementary treatments, and use hemp oil and stuff on the side. And it sounds as if there are serious diet and lifestyle changes ahead...groan.
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numb1980, seems customary to do mri, I had one too to check the rest of the breast for any other abnormalities as initially they wanted to do lumpectomy with rads, mri showed a couple of concerning issues so I have to go back for another u/s and mammogram with magnification views and another biopsy of a smaller area/ mass that is not palpable. BS thinks it is nothing, gobblygook but must make sure. If so will mean mastectomy; however I am leaning towards that anyhow bmx with diep. Saw my PS surgeon today and seem like I could be a good candidate, have to go for a ct angiography of abdomen to make sure.
Take care and welcome- ive only been here a month and feel like a vet now!
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Exactly Jujube43: A very unfortunate choice of words. It's inconceivable that any of us were "enthusiastic newbies". Anne
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Guys your inspirational. I'm sure you know that the positivity is so encouraging. I spoke with my specalist nurse today and I should have the full picture by the 20th of this month. Definitely having surgery on the 24th of April or the 8th of May. What that surgery is exactly depends on the MRI next week.
Apart from all that I'm not sick. I have no symptoms other than a lump. I have discomfort in my breast but I think that is either from the biopsy or it's all in my head.
There is A LOT going on in my head!!
I am terrified that when they do the MRI they will find I have more. The specalist nurse said they only found a little bit in the nodes which I am taking as a positive thing but I won't rest till I have a plan. I think it's the idea of control. The plan puts this... 'thing' under the control that it needs.
As for after treatment. Well I will cross that bridge when I come to it. Nothing I can do about it because it has to be what it has to be. I'd prefer that it doesn't make me sick and make my hair fall out because i hate being sick and I really like my hair. Mind you... I used to like my breasts and now I want to take them off and give them a good wash in bleach and caustic soda!
See I'm being positive now and that is thanks to you all here. You may notice I'm trying to be funny in some parts of my post but that's my coping mechanism and not intended to offend anyone. Please don't be offended.
Thisis such a complex thing. The one thing I have learned is that smiling takes less energy than crying but crying helps relieve some of the stress of all this. I will be doing a lot of both over the next year I think.
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Hi All,
It is good to know you are here. I can't stop doing online research, day and night. Thoughts of cancer consume me. My mother keeps telling me to stop, but I can't. I want to be informed. And the idea of radiation and chemo are so unpleasant. I keep hoping to find a viable alternative. My node biopsy is in 5 days. Surgeon is doing sentinel biopsy with immediate testing, and if positive, she'll remove all the nodes. So I guess I'll know right away if my nodes were positive.
She said radiation was pretty much a certainty regardless of node status. But chemo...I just won't know until I meet with an oncologist. I found one in town who did his fellowship etc at one of those universities that's only one of about 47 in the country that the national cancer institute ranks as top notch (WakeForest in NC). From what I could tell from their website, their research program is pretty progressive, and that's what I want in an oncologist. Not just somebody who doesn't have much interest in what's new in treatment and trials.
When I told my surgeon, she lit up and said he's a good one, very smart. That made me feel better. I live in a small town, and have been worried about the level of care available here. I live 3 hours from Duke University, and will go there if necessary, but I'd sure rather not.
This is hard. I haven't cried yet, but I'm sure it's only a matter of time.
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Numb1980 - you're right......trying to stay positive and laughing helps. I saw a decal in the back window of a car the other day that said: Check Your Boobs - Mine Tried to Kill Me.
The first part of this journey is the scariest. Keep your sense of humor and keep smiling! :-)
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Below is a copy of the post I sent to you, NCBeachGirl, yesterday, in case you come here first.....i
21 hours ago Trill1943 wrote:
NCBeachGirl, we're happy to have you here! And please feel free to "wail" all you want!
I know what you mean about crying harder when you receive some TLC--I do the same thing and always have! Maybe because we hold it in and then at that reassuring voice feel free to let go and not be so stoic about it....
It sounds as if you have plenty on your plate--more than enough! It's perfectly understandable you feel overwhelmed. All I can say to try to help along these lines is one thing that I've come to realize about myself that might help you.
Sometimes when I'm stressed and feeling vulnerable I tend to heap EVERYTHING into my mental basket at once. I let things mount in my head--as if I have to deal with them all at once. If, for instance, I'm getting ready for company and feel behind, suddenly I'll think of all I have to do coming up: the dental appointment, the pile of laundry, the two return phone calls I have to make and have been putting off, the checkbook that needs balancing. Mentally they are all upon me at once and this leads to a real bad evening or night or day or whatever it is.
I don't know why I do it--but I do. Just very slowly I've learned to shut myself up mentally--to stop the train of things from getting added to-- thing after thing after thing. I'm learning to deal with what's in front of me--and stop there. NOT let the whole gang come in and pile on me. They'll get dealt with in time--but not at once.
Your mom sounds a dear but she's your mom and I have the feeling she'd feel quite upset if you turned down her help. I had a friend once who did just this with her mom---"No mom I can do it myself!" Blah blah. So she went on her solitary way, not accepting the aid that her mom offered. And I know--because she told me so--it broke her mother's heart. "That's what a mom is for!" she'd tell me--and I'd agree. But my friend persisted, as, she said, "Mom has enough on her shoulders...." It wasn't until she came upon her mother sobbing in her garden, having once again been told to, in essence, stop offering that my friend finally, very late in the day, woke up. After that things went much more smoothly between them and I could tell her mom, though at times a bit stressed-out, was deeply glad to be helping her daughter. Eventually the load lightened.
I wish you a good week ahead. I'm thinking of you!
Fondly,
Trill
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Hi, Numb. I had an MRI, too, because I have very dense tissue. The radiologist couldn't be sure what she was seeing in my two mammos and ultrasound. It was the MRI that clinched the need for a needle biopsy. I found the MRI to be difficult as it was a long time to lie on my stomach with my arms stretched out in front (think Supergirl) and it's really loud. Ask the technician to give you time markers so you know how much time has passed and how much time you have left - that would have helped me tremendously. They gave me earplugs to wear - music would have helped a lot!
Best of luck to you.
MJ
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Hi Trill and everyone else!
I took a day off from cancer yesterday. A wonderful service dog training facility (The Service Dog Project in MA) has live webcams, and one of their great danes was giving birth. I used to have danes, and i raised two service dog puppies-in-training these past few years for a local place called Canines for Service here in NC. It was really hard work, but also super rewarding. My pups both "graduated" and are paired with really great people who appreciate them a lot. I follow some service dog pairs on Facbook. It's great to see how these wonderful dogs bond with their people and become such cherished partners.
So, I took a day off from cancer, and watched a beautiful harlequin great dane give birth to 12 healthy, wiggly little puppies, and followed live, running comments from other people watching the feed, and from the folks at the SDP who answered our questions. Check out their live cams on explore.org if you ever need a puppy fix.
That said, I had my second surgery on Wednesday. BS reopened the place where the mass was and removed more tissue to make the clear margins wider. She removed one sentinel lymph node, said it felt normal, and decided to close me up without removing any more. I had done some research on whether it was necessary to take all the nodes if the sentinels were positive (because positive nodes would mean I'll need chemo), and had told the surgeon I'd like to leave them in there unless the sentinels were crawling with cancer cells, if that was okay, cuz I am NOT keen on getting lymphedema. She laughed at me (she knows I'm on the internet all the time doing research) and said "Did you read the whole Z-11 trial?" Cracked me up, because, um, while I didn't read the actual trial, I knew exactly what she was talking about and what the trial said. Ah, ladies, isn't the internet great?
BS will send the node to pathology, and we'll have a report in a few days. Meanwhile I feel like someone punched me under my armpit, and my poor boobie hurts! Oh, and my gynecologist removed a cervical polyp at the same time. Yay! But no cramps. Yay again.
So the next step is having the post-surgical appointment with BS, then meet with an oncologist. I'll be doing more research before then. If my nodes are clear, will they only do radiation? Will they still want to do chemo/herceptin? BS thought they usually do both for this type of aggressive cancer (ER/PR neg, HER2 3+Pos, Ki-67 74%, grade 3). But the mass was only 9mm, no invasion into vascular or lymphatic areas within tumor, just grade 1 (so far).
I want to kick the cancer's ass, so to speak. But the holistically-minded side of me wants to avoid both radiation and chemo. The side that's totally aware that recurrence is a very bad thing and hard to treat, often treatment resistant, maybe mets to the brain or lungs or someplace awful, and probably incurable, is pretty afraid and thinks I should take both the radiation and the chemo. But I'm also afraid of long-term side effects of those treatments, so that's another reason to avoid them. I'm pretty unsure of what to do. At this point I guess I'll just do more research! And ask more questions here on BC.org.
Any comments are welcome. BTW, I'm only 55, but I have a ton of chronic co-morbidities, among them, fibromyalgia, chronic pain/fatigue, sciatica, bipolar (tending to depression mostly), neuropathy(motor and sensory nerve damage) in both legs, , sleep apnea, OCD, ADD... and I'm sure I'm forgetting something. I'm a mess, even before the cancer!!!
Thanks for listening!
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Hi NCBeachGirl--While you were watching the pups get born I was watching April the giraffe finally deliver after having checked on her throughout every day since late February--so this felt like I was giving birth myself, as I think many many others felt...Finally a beautiful boy calf after a dramatic and exhilarating labor....boy, that was great!
I'm so glad you are over the surgery and now can relax that at least that's behind you. I understand your need to research-I did tons myself, having the same misgivings you did. The old schizophrenic should I or not? I hope things get clarified more as time passes. I'm glad you didn't have more nodes removed--that there was no vascular invasion, clear margins--such great news!
OK try not to overthink it--take that from a chronic over-thinker! I try to "leaven" the heavy times with lots of laughter--I go to Saturday Night Live clips on the internet and laugh my sides off. And look up funny things from there like that classic Foster Brooks as a drunk airline pilot routine. Laughter is the best medicine sometimes--and I do believe that those hearty gut-busting laughs are also good for the heart-give it a good massage! I've grown addicted to more lighthearted series like Gilmore Girls and am wondering what to watch now that I've seen all six seasons.....something will come up, I'm sure.
I'm wishing you a great week. I'll be thinking of you!
t
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In my opinion chemo isn't just poison anymore. The drugs are fairly targeted, sometimes to certain receptors on the cells. I'm sort of a science person; I'm a research study coordinator, not an MD, nurse or anything like that. One of the groups I work with is the myeloma clinic. They do genetic testing on all the patients and the chemo is specifically selected based on the results. I assume that breast cancer is heading in that direction.
Nothing wrong with alternative treatments for sure. But the few people I've heard about who were diagnosed with cancer and went totally untreated and had metastatic cancer had a pretty frightening outcome. Something to think about.
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H Ladies,
I have my first MO appointment Monday morning. Not the doc I'd requested, but it's a doc I've seen for anemia several times. Turns out he's also an oncologist. Guess that explains why he works in a cancer specialist center, haha! I'd always thought it was weird he works there, lol, now I know. The lady who made the appointment had about zero personality and warmth, and said I HAVE to see the hematologist/oncologist and not the guy I originally wanted because I'm already an established patient. Well, since I liked the guy, I didn't bite her head off, and...
So of course, being totally OCD, I looked him up and looked up his university and places he did his fellowship etc. Turns out he's got just as good a background as the guy I'd picked originally, and has just as positive reviews from patients. Plus the guy is THE most cheerful doctor on the planet. Looks like I got lucky!
I researched our local cancer center too, and it seems to be well regarded. It's a teaching cancer center at our local hospital, which is a good sign. I've been doing entirely too much online research and my eyes are killing me.
I have a million questions for my appointment. Yet I feel like i already have lots of answers. One question is, how do I know the breast cancer tumor was the only cancer in my body? How do they know it hasn't metastasized somewhere else? Do they do some kind of whole-body scan or blood test? And how would they know if the breast cancer has metastasized from the bladder cancer I had some years ago? There are some interesting research connections between my two particular cancers. Makes me wonder about yet another question-- do I have genomic and/or genetic markers for cancers? Well, if nothing else, cancer is stimulating my brain. Until chemo-brain takes it away! Aaarrgh!
Tired!!! Goodnight all.
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Thinking of you Monday! Be well and all will be well! T
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NCbeachgirl - I was sent for a bone scan and CT scan of my whole body before chemo started. I was also sent for genetic testing.
Good luck at the appointment today!
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Hi Cowboy up. I have the same stats as you. I am terrified to get any treatment. I can't get the Tamoxofin in my mouth. I just can't.
And for Beachgirl: I was relieved to do the MRI because it will show any other cancer (no stone left un-turned). When they don't find any (any other) then that's a good thing.
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Hi All,
I'm on so many threads that I'm afraid i can't keep them straight! And i don't even have chemo brain yet. I start chemo tomorrow morning at the crack of dawn. Blood draw, appointment with MO, then hours and hours of chemo infusions and pushes and saline rinses. My brain is absolutely fried. Part of it's the cancer--constant thoughts, worries, and research, and part is because I had to take an unexpected trip that kicked my ass.
But my mom and I will switch into Cancer Mode in the morning, and from what i can tell, cancer is pretty much going to rule my life for the next year or two. We got mother's day doughnuts this morning as a kind of farewell to sugar, and I'm off to the grocery store soon to stock up on a few things. I have no idea how my body will react to chemo, but my gut feeling is that I'm going to be very sick and flat on my back, as I have a dozen other medical conditions already. On the other hand, I'm so used to being sick and tired and in pain and having a fuzzy brain that i may not even notice the cancer treatments!
TTY'all later.
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Hi NCBeachGirl--
I posted a note to you earlier but don't know where it is right now....
Anyway, I'll be thinking of you tomorrow! I know you'll do fine! You've been through a lot with your other health concerns so I'll bet you glide through this....
I've not had chemo but the first thing I was told when I thought I'd be doing it was "This is NOT the chemo of the 1970's! We have much more targeted meds and things you can do to deal with side effects than they EVER had back then--so be calm."
So if I'd had it, I was prepared!
Happy Mother's Day to you and your mom! She's sounds like a doll--just like her daughter.
Take care--you're in good hands--
love to you,
Trill and Miss Pantaloon,
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Trill, LOL, I've lost a whole lot of posts in my day, too!!!
Thanks for the vote of confidence and support. Yes, they say chemo and associated meds have come a long way. But my cocktail, CMF, is an oldie. All my meds come with a huge laundry list of SEs. Can pretty much count on mouth sores, hair loss, significant fatigue, and plenty of pain. Oh well. It is what it is.
BTW, who is Miss Pantaloon?
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NC
BeachGirl--Hope your day has gone well! Get some good rest now, OK?
Pantaloon's my kitty--here's a snapshot of her.....she sends her best...
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Aww.... she's so gorgeous, Trill!
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NCBeachgirl, you might be surprised about the chemo. Mine took about 4-5 hours and I never felt sick. They pumped me full of fluids and antinausea stuff, so I basically just sat there and played on my computer and ate snacks. My Dr also had me return the next day for a couple more liters of IV fluid.
I won't lie. I had good days and bad days. I was very fatigued and my taste buds changed for a while. I lost my hair. I ran some fevers and got septic once. But I never threw up and i actually looked pretty good. My experience was NOTHING like you see on TV or in the movies.
Best of luck to you. Try to go into it with the attitude of a warrior. You're Boadica. You're Lagertha. Choose your spirit animal tonight and turn her loose when the start your chemo. No fear. KILL CANCER!
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btw, do you live in the OBX? Just wondering. My family is from Kitty Hawk and Kill Devil Hill.
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