If you are not Stage IV but have questions, you may post here
Comments
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Thanks for responding. Yes, I am between calling my oncologist or calling my primary to figure out what is going on.
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I'm greatful for this thread, as I don't yet know my full diagnosis. I was diagnosed on July 27, 2012. I'm not having surgery until October 22. I'm starting on arimidex sometime this week or next.
I've had mammos, ultrasounds, and biopsy, but no scans. Doctors seem sure there's nothing in the right breast.
I've met the whole oncology team, and I have a lot of confidence in them, though, not as much as I have in my God! I've even had all the pre-surgery testing, but I guess blood work will be done again before surgery.
For the most part, I'm pretty calm, but I'd be lying if I didn't say I'm nervous about the final pathology report.
Thanks to all of you for your comments.
Blessings
Paula0 -
It sounds like it could be garden variety disc pain. I've had both. Just cause we have or have had cancer doesn't mean that it isn't a more ordinary (yet still sucky) affliction. Either way it needs to be checked out. Good luck.
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My mother was diagnosed with breast cancer two years ago. She said and did nothing until the pain was so great she finally went to the hospital. She is stage four with small tumors on her lung and ribs. She has been through two rounds of chemo and has handled it well. The swelling in her arm has gone down and she can know feel two of her fingers again. They did not do blood work after her second round of chemo because they said her port site looked good and the leakage was the right color. So my question is -- is that normal? Why wouldn't you do bloodwork after each treatment? I live in North Carolina and my mom lives in Maine. We talk every other day but I am worried that maybe she is not being completely honest, she is depressed.
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Colette, I had aggravating back pain that I kept ignoring. It turned out to be a fracture and it collapsed before I was able to get treatment. Horrific pain when it collapsed. Minimum you want an X-ray of the area first to see if you may be dealing with a fracture.
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Colette, I had back pain for two years (yes sitting in a car aggravated it) that I ignored and then went to a chiropractor. Once I was dx with bc my onc ordered a PET scan due to the back pain. It came back with extensive bone mets.
My point is not to scare you but to encourage you to get an MRI. This will let you know what you are dealing with - it could be many other things besides mets. But do not ignore it. My thoughts are with you.
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Thanks everyone, this information really helps. I think I needed some encouragement that I probably should bring it up to the doctor and not ignore it. I do not want to be a hyperchondriac but I also want to be vigilant just in case. Better to find something early and deal with it then when it is too late to do anything. I know my doctor is not a fan of scans unless they are necessary. That said, I would not mind one for more information so I know why I am having the pain.
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Not a concern, but I didn't want to invade the privacy of the stage 4 forum.,
Read a news article today touting a drug called AFINITOR aka everolimus. Sounds like it is for stage 4. Good for ER PR positive advanced cancers. Says it is used WITH exemesatne after tx of letrozole or anastrozole has failed . ( Claims the BC becomes "immune " to the letrozole or anastrozole.)
In any case, they make it sound like a darn miracle drug. Maybe this is old hat for some ppl. but just in case , I wanted to spread the word in case women wanted to ask their DRs about it.Best wishes to all.
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Thanks Purple for the information.
Love n hugs. Chrissy0 -
Lots of threads on affinitor around here and many of our ladies are on it. But, it's nice of you to mention it.
I have had back pain for a couple of years. Turns out to be a disc problem. However, that pain is how I got dx'd with liver mets. I told my onc, he did a scan, and found the liver mets. It is incidental (unrelated) to the back pain. I suppose it's good that the liver mets were found since I had a resection, but I still have that darn back pain!
We always have to remember that even people who have a history of cancer can have normal aches and pains. But of course, you should always tell your doctor about them.
Biker, here's hoping your aunt has no lung disease.
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CoolBreeze, thanks. Interesting that an unrelated to cancer pain assisted you in finding cancer. I realize that it may be painful for a lot of reasons and may or may not be related to cancer. It is just so hard to control the mind sometimes.
. I will definitely bring it up to my oncologist and discuss.0 -
I am new to this stage IV thing and am finding this discussion a source of information as well as a compassionate group with good advice on life in general. I was diagnosed with a recurrence in April and was already taken off a clinical trial because of mixed results. I think I am going to be thrown off a second trial because I have a skin tumor that is getting worse. I am trying very hard to remain positive but find myself feeling sorry for myself that nothing seems to be working. I don't feel sick and am having a hard time believing that I could actually die from this. My family and friends are great sources of strength for me but I dare not let my guard down and let them see me afraid. They always tell me how I'm a model of strength. Do they keep saying this so that I will actually believe this?
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paty - sorry that you have progressed to stageIV. If you have not found it yet there is a great thread for Stage IV - come and join us for support, encouragement, information and lots of women willing to share their experiences. It is hard to remain positive all the time so don't be afraid to let your guard down once in a while. IMO I think that others need to see that bc isn't all pink and pretty. We do have fears and can not always be the model of strength that they want/need to see.
There are so many treatments available today and I hope that you find the one that will work on that skin tumor.
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Hi Paty and welcome. So sorry we had to meet this way but we're not a bad bunch.
Stage IV has good days and bad and IMO it's easier to cope with all the emotions if we can go with the flow and accept it for what it is. Sometimes we need to show those around us that it is impossible to be upbeat and strong every single day and when we are being strong, it's not for them but for ourselves.
Hoping you find what works on that skin met and it begins to heal soon.
Love n hugs. Chrissy
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I wish there were a site where you could enter all of your BC stats and find out which tests/scans and treatments are recommended. The NCCN guidelines pretty much examine each stat independently (i.e. "if you have positive lymph nodes, then we recommend..." or "if you're TN, then we recommend...") but I haven't found any literature that combines everything for more accurate recommendations.
As mzmerz and coolbreeze found out, mets don't always cause pain. It could be growing now and I'd never know it! Is it selfish to say I don't want to progress to Stage IV if I can help it?
wrsmith - make an appt to see your MO now. Don't wait.
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Thanks, I really appreciate the response and the support. I am with you, it would be so nice if we could really understand our risk, but it seems to be a crapshoot as to who recurrence happens to and who it does not happen to. I suppose the most we can all do it be honest with our oncologist and hope that they are adequately screening us for further signs that there is a recurrence.
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Paty,
I'm sorry that you've joined us at Stage IV, but come on over and express yourself to your heart's content... cry, scream, shout, swear, it's all healthy in my opinion. And hey, your audience will applaud you for it too!
I hope your skin met will begin to heal soon!
Sending love,
Rose.0 -
I had a PET scan on Tuesday. Everything looked good, liver, bones, lungs, except for a small hot spot in my head near an optical nerve. A possible glioma, the radiologist wrote. Do any of you happen to know if a glioma is a typical tumor type for breast cancer mets? My doctor is getting me more information from the radiologist after the holiday. She seemed kind of unconcerned. I don't know her well enough to know if she's down playing it or if I really shouldn't waste too much time worrying. If it wasn't cancer absorbing dye in my brain, what else could that spot be? I haven't had much luck linking breast cancer and gliomas online. Any info you can offer is appreciated.
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Hi Laura from what I've read on the subject of gliomas they are not typically known to come from or be related to BC.
Hope this helps.
Love n hugs. Chrissy0 -
Thanks for taking the time to respond, Chrissy. Your comment makes me feel a whole lot better.
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journey4life - I agree with you about the scans. There seems to be such a difference on who gets what and when. I was told you only get a PET if you're at least Stage 3, or are symptomatic.
I'm finally going for an xray for my chest and lower back. That cough that started in May is still hanging around. It's not getting worse, and I often have post-nasal drip, but I just want an answer. I wish I had scheduled it earlier (I got the scrip a month ago), but my MO said my chest sounded fine, etc, and I hate being a pessimist. But I guess I need to be vigilant. I'm trying so hard to keep my head out of the dark places. I just want to move on with my life. I'll check back when I get some results. Sending good thoughts to everyone.
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Rachel - You're definitely doing the right thing in getting that cough checked out. If I've only learned one thing since being dx, its that you have to be your own advocate. We know our bodies better than anyone - glad you're listening to what its telling you. Be sure to let us know what you find out. We'll be thinking of you!
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Rachel, haven't seen you lately, have thought about you and hope you are doing well. Are you getting back to regular life since finishing chemo? Hope the cough is something very minor. Best wishes.
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Journey4lif - Thanks.
Thanks Linda. Yes, life is getting back on track. I feel like work is leaving me with less time than ever. I still have occasional PT and PS visits, on top of two oncologists and trying to catch up with all my 'regular' appointments (derma, just in case, my dentist). Waiting to be able to go a month without seeing some type of doctor!
My gyn wants me to have a D&C because of polyps. Oh joy.
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Hi ladies, I was curious about how their can be mets if there is no lymph node involvement? I should ask my onc about this but I was lurking on this page because I am terrified of mets. I guess I was under the impression that the cells could only cause mets if they went to the lymph nodes first.
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Hi ckgrayoh I'm sorry to say that yes there can be mets without lymph invasion. On my path report it was written that I had lypho/vascular invasion but clean nodes........that means that it travelled through my blood and lymph fluids. Unfortunately for me I was unable to complete my required chemo and had a very bad reaction to Tamoxifen so I was not protected and found the mets just over five years from original dx.
Mets are not good but most of the time they do not stop a person from leading a good life. Living in fear of them will take from you the joy that you should be able to gleen from life in general. Try not to worry as that only causes you stress and stress is something we can all do without.
Loven hugs. Chrissy
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I was considered early stage until my PET/CT which was ordered just before surgery. I was stage iv from the beginning with a tiny met on my spine. I never had breast surgery so we'll never know for sure if I had lymph node involvement, but I had 4 doctors tell me they didn't think I did just based on scans and that fact that none were swollen. My original breast biopsy report said there was no lymph/vascular invasion either so I think everyone was surprised something showed up on the PET. My oncologist said somehow some tiny little cell escaped through my blood stream. I don't mean to frighten anyone with this, but bc can be so sneaky.
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Rachel: ask your gyno about getting a Hydrothermal Ablation instead of a D&C. I had it done in 2008 for a huge fibroid and a polyp. Basically, they put saline in your uterus, then heat it to around 180 degrees for 10 seconds or so and voila...cooked endometrium.
Other than cramping for about a day, it was an easy procedure and no risk of scalpels cutting the wrong thing like in a D&C.
If you get it done, it does mean you can no longer get pregnant. Well, you can conceive in the Fallopian tubes, but you wouldn't be able to keep it as there is no endometrium for the egg to attach to in the uterus. So, if you are still thinking of having children...Nevermind.
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SuperFoob - Thanks for the suggestion. I think he wants to do some pathology to make sure there's nothing brewing, so I'm not sure that work. My chances of having kids is already close to nill (now in chemopause at age 43, and not allowed to get pregnant anyway for 2 years because of chemo).
I still get annoyed that I was constantly told not to worry about rushing to surgery - took 3 months between finding my lump and having my bmx, and no one ever offered neoadjuvent option. I was grade 3 from the initial biopsy, and bmx pathology showed vascular invasion, even though all nodes were negative. My doctors all kept saying that studies showed no change in outcome within a three-month window. I just have to keep hoping for the best.
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Rachel, I was told the same thing about the delay in initial treatment not affecting the outcome. I am not really believing it, as I had a "normal" exam in March of 2010, found a lump that felt really big to me in July 2010, had "diagnostic mammogram" and ultrasound and found the lesion that was almost 100% sure it was cancer, but couldnt get in to see the surgeon until August, then ditzed around with a punch biopsy instead of going straight to excisional biopsy (which would have been basically a lumpectomy with maybe some extra attention to getting clear margins), and finally surgery in September, then chemo 3 weeks later in Oct. PET scan was clear in Jan 2011, had recurrence July 2011, and now again. When it grows that fast, I think earlier excision is a better idea, but I couldn't get the BS to move any faster. Now dealing with second recurrence and NOW she wants to rush me back into the office to discuss additional surgery.... I am older and wiser and not prone to rushing these days - am over that.
So sorry you are having to deal with gyne problems. So unfair!
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