If you are not Stage IV but have questions, you may post here
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Hi All,
I appreciate the support that I have received in these forums. My mom has since allowed me access to her medical records and I have found the following:
Diagnosis:
Peritoneal Carcinoma, ER-, PR-, possibly HER+ that is consistent with her original breast cancer diagnosis in 2005.
I have not seen the HER + confirmation report yet, but I spoke with the doctor that treated her in 2005 and he said that the treatment would be Herceptin (if HER+) , Cytoxin, and Adriamycin. Her pathology report states "Separate Report to Follow" under HER2 status.
A few questions and comments:
* My first plan of action is that I will inquire regarding when the FISH test or the Inform HER2 Dual ISH test to confirm the HER+ diagnosis to ensure that the Herceptin will work.
*Does anyone have experience for treating this using the Herceptin (if HER+) , Cytoxin, and Adriamycin?
*Naive question- Since the peritoneum is essentially a lining of the stomach area and not a vital organ, why does this show as a poor prognosis? Why is it so hard to treat?
* Is a combination of cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (HIPEC) an option for treatment?
Thanks all!
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Hi All,
I finished radiation - the end of last year. Now my ONC is having me do blood-work every so often. (The first set of blood work was in January).
Anyway - She wants to include "tumor markers" in the blood work that I'm to have done next week. She said she's doing this - because I'm very high risk...
I am new to this test (never had it done before) and very scared that it will be abnormal/high. I was wondering if anyone else here - has had this test before and what happens - when results are abnormal? Does that mean a CT and/or Bone scan needs to be done? Or do you get retested in a few weeks or so?
I'm freaking out about this...I feel like based on my original dx - there *must* be some cancer lurking somewhere in my body....
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TMs are accurate for some people, and not accurate for others. In your case, you could consider this test an an early warning system. It will not say whether or not there is cancer again, but higher TMs would alert your onc that a scan should be done. Oncs will tell you that finding mets earlier does not mean longer overall survival, so that is the argument for avoiding the anxiety of TMs, and not doing TMs or scans without symptoms. On the other hand, finding a recurrence earlier may mean better quality of life; for example, getting treatment before a bone break appears, or being able to use hormone therapy instead of chemo as the first line therapy.
Being high or low risk is only about statistics, not about individuals. Your onc is being careful because of your stage; it does not necessarily mean she thinks you will recur. Talk to her about the TMs some more, until you feel more comfortable with the decision.
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You are correct. Tumour markers may be used to check if cancer has returned, stopped responding to treatment or to establish a baseline to guage recurrence risk. It can also check on results of treatment.
TMs are not accurate for all.
Try not to agonize. It does NOT immediately mean more cancer. Your team will take care of you. Hugs your way. Keep us posted.
Above info from www.cancer.ca
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Because TM are not accurate as they can be effected by other things going on in your body, they are used more for watching the trend over time. Should they trend up over repeated tests, your onc will then order further testing to see what's going on.
For some people they are wholey inaccurate........I'm one of those.......and show nothing but the norm even when we know there is active cancer.
Please don't stress over this blood test as it is a very normal one done as part of your on going care.
Love n hugs. Chrissy
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Thanks Everyone for the very kind words and support...this is such a difficult time...and your words help so much!!!
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What is the treatment for bone mets. Does arimidex work. Thank you for any insigh
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Hi melmcbee, yes, arimadex is a powerful treatment in a little pill. Please don't think that it will not work. I have bone mets and my first treatment was Arimadex and it worked for fifteen months before I had a small progression. At that time my doc changed me to Femara (same family of drugs just put together a bit differently ) and that has gotten me to NED (no evidence of disease ) and I have been that way for five years.
The way the docs treat mets is with quality of life first and foremost while trying to contain or at the very least slow down any progression.
Keeping everything crossed that the Arimadex works well for you with few side effects.
Love n hugs. Chrissy
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Thank you Chrissy
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So orig dx was Stage IIIC, I think the MO is taking way to long to get things moving. Had a CT of abd chest pelvis, met the RO and she got the CT report something with the Kidney she sent me to a Urologist and ordered a PET Scan. Met the Urologist he said to remove the kidney. Spot on the bone in spine from PET. Disappointed in the MO that she never responded to me about the DX of the CT when I physically left the report at her office. MO put me on Arimidex (anastrozole). So is this acceptable treatment? No Chemo etc? I am getting a second opinion from a different MO. just need to vent
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Hi goincrzy8, Anastrozole is a normal first treatment for hormonal positive mets. Just because it's 'just a little pill' please don't think it won't work as I can assure you it really packs a powerful punch.
Oncs the world over treat mets a little different to first time round as it is no longer about a cure but about quality of life while trying to keep the cancer in check. The AI'S (Anastrozole - Arimadex, Letrozole - Femara and Exemestane - Aromasin) are a normal first line treatment and chemos are kept for much later.
Goodluck withbyour second oppinion.
Love n hugs. Chrissy
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TY Chrissy
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Please get a second opinion from a major cancer center before you consent to surgery, Goincrzy8.
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My onc doesn't do TMs. Should she? She says they are inaccurate but then she says I'm high risk. I've asked her before but she doesn't feel it's necessary. Should I push?
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Artista for some people they are pretty accurate while for others totally useless but to find out which catagory you sit in you need to at least test for a period of time to watch the trend.
Always keeping in mind that tm's can also be effected by other bodily inflammation so this is why some docs consider them unreliable.
Hope this helps.
Love n hugs. Chrissy
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Hi all, 6 months ago I switched to an onc that does TM's. last August all were within normal limits. TM's redone last Monday. Last night my MO called and told me ca 27.29 was up 10 but within normal limits, CA15-3, elevated only slightly from last time but still within normal limits. My CEA however had gone from 2 to 4 which is above normal limits. Then he asked me if I had any symptoms, I told him only lower back pain but it was ongoing for some time and I figured it was due to a ruptured disc and the fact that I'm on my feet all day at work. He said, "well, we'll start with a bone scan then". Hopefully I'll get the scan this week, thoughts anyone?
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I just read a message in a breast cancer support group I'm in. I think it can go into the don't say this. A woman is very worried because she's stage IV & was told she only had a few months left, I don't know what treatments or any she's on. She has school age children so was worried about them etc. This lady, answered that her mother died of breast cancer leaving 4 children & it was devastating for them. I think that's not very nice. She's already worried about telling her kids, the last thing she needs to be reminded about is how devastated they'll be. She knows & doesn't need anyone to repeat it. So just be kind. Let your friend know she can honestly tell you her feelings. Don't push anything. Everyone needs something different. Some want to vent & talk where as some just need company.
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Artista - I wish my ONC did not do TM's! And, she tells me I'm high risk - too. But, in my case I'd rather her *not* do them as this test truly scares me. It's giving me a great deal of anxiety because I feel like there must be *some* cancer hiding out somewhere in my body. I feel like I'd rather not know...as I'm not in any pain and rather have a mental break from BC until my scan that is scheduled for July...
Genny - I'm sorry I don't have any answers for you...just know you're not alone in this TM torture...(((hugs))).
As for me...I had the dreaded blood work done on 2/20 but still no results. I'm worried (also) that my blood work might have gotten lost because at had it done at another medical facility (because it was easier to get to). I guess I probably should have had it done at the same facility as my MO's....
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Scared, I'm just the opposite, I hunted around till I found an MO that did TM's. I always have aches and pains and when I had the TM's 6 months ago and they were normal it brought me tremendous peace of mind. I'd like to know about mets earlier rather than later but we're all different. I think the TM thing should be up to the patient. Good luck with yours and try to relax, easier said than done I know.
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Genny it's a good thing that your pain is being checked.......it's way better to know that there is nothing there than to be second guessing and stressing over it.
Keeping my fingers crossed for you.
Love n hugs. Chrissy
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Thanks Genny...good luck to you as well!
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Did any of you who are now a Stage IV start out with Stage I, IDC, non aggressive, small tumor, no lymph node activity, ER+, PR+, HER2-?
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Update - after one week and one day of pure stress - just got the call that all my lab results and tumor markers were "fine". I had to ask - over and over - to make sure I heard her right - but - she said they are all "Ok"!!
Now just need to wait for the bone scan in July (that was already planned - but - glad I get a *break* from worrying at the moment!!!)
Still shaky from the phone call and was crying afterwards - everyone in the office thought I just got bad news!! I guess it will take awhile for it to sink in - that my news was good!
Thanks Everyone for ALL the support on here - it has been a nerve wrecking 8 days!!!!
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Scared, woohoo!!! Great news, now do something extra nice for yourself tonight!
I am in the waiting room at Cleveland Clinic, waiting for contrast injection then bone scan at 6:30. Hopefully results tomorrow. Wish me luck!
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Great news Scared! You can now relax and start to breathe again.
Keeping everything crossed for you Genny........hoping the result are good.
Love n hugs. Chrissy
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First of all, I'm a worrier, so need some words of advice.....I am a little more than 5 years out from a Stage 1A Grade 3 IDC. On December 23, 2016, I fell hard on my left trochanter bone (hip). Before that, I had had right hip pain when I walked for over an hour, since late summer 2016. Just a dull pain. Because of the hard fall, I had X-rays of my hips (he wanted to compare the right and left, but the left was the one I fell on). Nothing was remarkable (nothing broken, but maybe some bone spurs). Since the fall, my right hip "pain" (still just a dull ache) has gotten a bit worse. Now, when sleeping, I can only stand about 10 minutes on my right side (I'm a side sleeper) and I get some associate pain in my thigh and right shin (like sciatica, but not down the back of the leg).
My question is, would that X-ray have shown any bone cancer lesions (taken early January)? Do bone mets cause constant pain, dull ache, only under pressure??? What should I do next? I feel my hip now, but it's just like it is there.
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Hi everyone,
Sorry if this has already been covered but my question is: How bad is the pain from stage 4. I guess it depends where is spreads to? How do you manage your pain and would you say it is effective?
Thanks
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QuinnCat, if you are worried, take action to ease your worry by making an appointment to investigate. You can ask your onc for a bone scan in order to set your mind at rest. Another idea is to see a physical therapist for a possible diagnosis; for example, trochanter bursitis causes hip pain that makes it hard to lie on one's side. If you are protecting your left hip, your right hip may be getting more stressed. (I'm not a medical professional, just someone who has experienced both the worry and some injuries, so I know how hard it can be!)
Jadisn, could you tell us the reason for your question, so we can answer helpfully?
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jadisin, you will probably get different answers from different women who are stage iv. I have been living with the disease for 6+ years. I have joint ache from the meds, but it is not debilitating. When I am sittng, I most often feel comfortable. When I walk, it is not with the bounce in my step I had before bc. I mentally push past the discomfort and I have learned to pace myself, and simplfy my life to make things easier on myself.
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Shetland - thanks for your response. I happen to be walking with my gf who is married to a surgeon so I asked him this morning if X-rays could show lesions. He kept asking "plain X-rays" and finally he said yes, they could. So that was good news since the radiologist didn't say anything about cancer. Funny, my friend's husband mentioned bursitis too. At my last MO meeting, my doctor suggested possibly taking Faslodex to prevent bone mets. I didn't give it much thought, but now I am!!! And since I see her in a couple of months, I will probably let this ache go (I'm big on not knowing things if they are bad). I also think there is a possibility when I hit my left trochanter so hard, it could have misaligned my pelvis area and even though this is my right trochanter area, there are many tendons coming together in that area that could have suffered some trauma in that fall. At best, it is just annoying and will resolve.
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