TRIPLE POSITIVE GROUP
Comments
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I don't know anything about implants, but someone will come along soon. Wanted to send you hugs though and good wishes to feel beter soon. Have you tried taking your pain meds? You have been trough so much, your poor body! It will get better.
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Hello red and sooooo sorry to hear abiut your pain and suffering. I also suggest you take whatever pain meds you were given asap. After all the meds my body has been thru in the past few months I no longer put off taking those pain pills I used to forgo in hopes of having a healthier me.
I know nothing about implants personally but have gotten great advice from ladies in this forum on implants because I am considering BMX and did not want o go the DIEP route.
The feedback has been overwhelmingly positive with the TE implant choice.
Wish I could be more helpful but I haven't had even a lumpectomy yet. I do hope you find relief fom your pain. Please know that my thoughts are with you as you face this huge challenge in your life.0 -
Red,
So sorry things didn't work out the way you hoped.
My experience with the tissue expander is this: Since it stretches the pec muscle, your chest will be sore (like a throbbing muscle ache) for a few days. And mine hurt when I lay down for a couple months, but strangely, getting fills made it feel better...
If the pain is constant and doesn't get better in about 2-3 days call and make an appt. They can always remove fluid until your pec muscle gets used to it. And they can rule out infection or anything else that might be going on.
The cycle typically works like this:
TEs are placed with some fluid in them. It is uncomfortable and sore for about a week, but for me after the 3rd day the pain started receding.
You go in and they fill your TE with saline....this stretches the muscle more, which can be painful. Usually within 3 days though you should start having relief (if you have pain at all).
Once you are expanded to your full size, or a little over, you go into the OR and they swap your TE for an implant. (Unless you have a TE that IS an implant, then I think they just remove the tube).
Most of the time, if there are complications with implants it comes from Rads. There are too many to list, but you can read about them on this forum.
Hope this helps.....
t
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Cowgirl,
Did you have a lumpectomy?
Lumps almost always get rads clear nodes or dirty. I chose a MX in hopes of skipping rads...but my nodes weren't clear so I got it anyway!
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TonLee I am so grateful you showed up. I felt so helpless . All I could do was cry !
Did you see this?
"
Fairly consistent data suggest that simply counting CTCs represents a useful prognostic tool for certain cancers. One of the first published papers in the field, by renowned breast cancer researcher Massimo Cristofanilli, MD, now at Fox Chase Cancer Center in Philadelphia, found that between 60% and 70% of patients with metastatic breast cancer (MBC) have at least two CTCs per 7.5 mL of blood, while such cells could rarely be found in healthy controls. A minimum of just five CTCs per 7.5 mL of blood predicted poorer progression-free survival (PFS) and overall survival (OS) compared with those who had fewer.
With varying thresholds, researchers have found CTC levels to provide similar prognostic value in prostate and colorectal cancers—hence the expanded approval for the Veridex assay.
But simply being able to predict who will do better and who will do worse is of little value to the patient, other than knowing who needs to get their affairs in order more quickly. Clinical utility depends on actually being able to shape treatment choices based on the information provided in an assay.
Can CTCs do that? Maybe. It seems clear that they can accurately measure response to treatment in the cancer types for which they’ve been validated—again, breast, colorectal and prostate. Studies by Dr. Cristofanilli’s team and others have found that in patients with nonmeasurable disease, a decrease in CTC levels two to five weeks after starting systemic therapy correlates with improved PFS and OS. In the recent Phase III CAIRO (Capecitabine, Irinotecan, and Oxaliplatin in Advanced Colorectal Cancer) study, patients with three or more CTCs per 7.5 mL at baseline had a 1.5-fold increased risk for progression (P=0.0003) and a 2.2-fold increased risk for death (P<0.0001) compared with those with low counts.
There are other ways of monitoring response to treatment, of course, but some studies have found that CTC analysis may be more accurate than these existing options, such as imaging in breast cancer"
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Okay, what are CTS? Is it something all triple positives have?
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Kay. I was going to ask others. Apparently it is circulating tumor cells. The only blood tests I know of used to detect cancer is the tumor marker tests during my chemo. I know there will be more after treatment but have no idea of this is what they are referring to.
From what I've read previously...blood tests weren't the best indicator.
I have a google alert for Her2 positive breast cancer and this one really threw me off.0 -
Red - I hope you feel better soon.0
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Tonlee- thanks for that info. So yes my pecs are sore ,not too bad if I'm upright and sitting and walking, the pain was ridiculous when I went to bed. Last night and tried to get up to pee. I couldn't get up and had to get my hubby to help. Me up. I hope it ain't gonna be rough like this every night. Maybe tonight I will sleep on the comfy sofa downstairs where I. Can sleep more upright. And go to washroom with ease.
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Red some people do experience a little more pain than others when the tissue expander is placed. I assume you are in so much pain because so much has been done all at once. Like TonLee says, take the meds if you are pain. You shouldn't suffer. If the meds aren't working call your doctor and get stronger meds. The first PS I saw said that what my BS did (removing breast tissue) isn't what will hurt. What he does (placing the TEs) does. In time it does get better.
I would be sure they expand you slowly. I think I was expanded 60cc weekly. If you are in that much pain after expansion you can ask for maybe every other week. Some PS expand with more ccs. I found the first 7 to be rather painless. After that I took Aleve before I left the office to relieve the pain. I only needed it for a day… but I was pretty lucky in the sense that I don't believe I had as much discomfort as others.
I found the exchange surgery (when they switch the TE's to implants) much easier. Did your PS say what kind of implant s/he plans to use? There are several types.
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Hi lago.
I came downstairs at 5am and just retired to my comfy couch.And just slept due to sheer lack of sleep from last night. When I lay down for the the first time, honesty my words were (sorry if this is offensive ) You've gotta be fucking kidding me !!!!!!!! I was like how the fuck am. I supposed to get out of bed!
Anyways, I woke my hubby up each time as I went.
I'm on strong pain killers. But nothing is really taking away from that stiff peck muscle feeling. It's only really when I lay down. Tonight I'm sleeping on the couch.
They told me at the hospital what implant but I was too drugged up to. Remember. All I know it's silicone on outside and saline inside, and it's an expandable type of implant. So once all the fills are done, there is no exchange.
I would like to be ale to to eras arch the implant I got but I forgot the name.0 -
Red, then you have saline implant.The nice thing about saline is it will always be the temperature of your body. I find now that it's winter there are times my silicone implants are ice cold to touch… good think I'm numb there.
Yes I remember getting out of bed hurt. I used to try and roll on my side to get out of bed but that hurts too. It takes time but you will eventually feel less pain. I really do feel you are experiencing more pain than most because of all the surgery that was done. Some people do find it more comfortable sleeping in a recliner. I didn't but used a ton of pillows to create a wedge behind my back and head in my bed. This way I could sleep on an incline rather than flat. As I felt better I removed pillows… but it was at least a month before I went flat (don't remember exactly). At the time I bought cheap pillows from Target (It was back to school time so lots of deals for collage).
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Great advice lago
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red - you might see if you can get a prescription for a muscle relaxer like Flexeril or Soma. Sometimes that pec muscle will spasm from the instant stretch. Take it with your pain meds. I did the bunch of pillows too but I know some ladies did better with a foam wedge augmented with pillows. Also I know you have had a LOT of surgery but gently stretching in the not too distant future will help you with that tight feeling. I don't know when you will be cleared for a proper bath but I found that helped as well. I stood in the shower until the hot water ran out and put my hands up on the wall to stretch out my chest, also helpful. So sorry you are uncomfortable
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I'm not allowed to life my arm yet but I will be seeing my surgeon for a follow on Tuesday to remove bandages and staples.
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redninrah if you have drains you will not be able to lift your arms till they are removed.0
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Hi ladies, I wonder if you might be able to help me with a little mystery: after my first radiation treatment, my entire breast became red and also swelled up slightly to the right of my nipple. My surgical scar was also itchy the morning after. I use Calendula lotion as recommended by my RO and tested it on my other breast to make sure it wasn't an allergic reaction and had no reaction there, so I don't think it's an allergy.
Any ideas? Anyone have this happen to them after the first radiation treatment? I saw the RO on call (she was awesome!) and she thought it might be fluids building up in my breast, but it certainly is a mystery to everyone!
Thanks!
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My RO told me at my first appt that breast swelling starting in the first few txs is a common effect of rads and it may or may not go away afterwards.
Breast shrinkage can also be an effect. I'm hoping for the swelling so my BC side matches the other side, but I rarely get what I hope for these days :-/
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Ashla,
Very interesting. Thank you for the link. Looks like you can order this test yourself straight from the lab and then go to the Dr for the blood draw. It sounds promising, and like it's been available to BC patients for awhile.
My Onc assures me every time I see him there are no "reliable" blood tests for cancer. Says when there is, he'll give it to me. (And as far as I know there aren't any recommended standards of care if they do find CTCs in the blood but no actual mets. I'm not sure my Onc would treat me unless he found cancer that could be "seen." Right now this seems more of a prognostic tool (who is likely to have their cancer come back) as opposed to a tx tool.)
I'll mention this to him though...
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NWArt,
I'm no Rads specialist, but it seems odd to me that you are having a reaction after a single tx. The effect of Rads is CUMULATIVE...it builds over time. So maybe it's not the rads at all but something else.
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Ton Lee, yes I did have a lumpectomy. and by the way, i really like this thread. I mostly lurk and always check it. I'm 18 months past my last Herceptin and it took me quite a while to feel good but now I feel better than I have in years.
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I hate to say this, but it could be LYmphedema. I swelled up from LYmphedema after my first rads tx, but it was in my hand and lower arm. It can be in the breast as well though.
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You should post in the LYmphedema forum and see what the more knowledgable ladies there say. There are some experts there.
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Thanks everyone! This is definitely something that requires more research on my part. I had never even heard of breast lymphedema! Oh, the things I have learned the past 6 months...
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Red - Those expanders are definitely not that comfortable. I could never sleep on my side while I had them. Also, I think I slept in the recliner for about a month. The pillows behind your back should help too if you don't have a recliner. You should start feeling better soon but I would definitely take pain meds if you can't sleep. Hope you feel better soon.
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Hi Ladies Just catching up here, Yay Special K, so thrilled for those of you finishing H. I have 2 more to go..I scheduled my port removal the same day as last H, can you tell I want it out?
Red - I had my TE's put in right after my mastectomy and what I thought was ME pain really was TE pain. For 3 weeks I was in terrible pain but I did the excercises and they really helped shorten the lifespan of the pain and I really got full range of motion back much faster. I propped myself up with 12 pillows and slept upright for 6 weeks,stay medicated and it will end.
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nmoss - Thanks! Just waiting to see if some of this aching goes away once the usual three weeks pass and there is no more Herceptin! Went early this monring for a bone density scan - checking to see if I have any more loss from Femara and considering whether to take an injection for it. The next two "h's" will go by fast and then you will be done and de-ported!
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SK good luck on the Scan! It's always something with the dreadful disease!
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nmoss - I had to get them before BC since I had a total hyst/ooph 10 years ago. They are no biggie - totally non-invasive. I am just worried about the osteopenia being worse. Here is a funny - the tech finished the scan and I am in the hallway with my gown and sneaks (I wore track pants like a dufus instead of cute crops and sandals) - not a good look for sure. I had to wait for him to check to see if he got good views, and this older couple comes. Wife goes for her scan, and I am conversing with the husband in my ridiculous outfit. Their tech comes, says all is well, they get dressed and leave. The tech looks at me and is wondering why I am still there - that is because my dude forgot about me! He comes running back, all apologetic, and says I can go. So silly.
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Hello Ladies, I am new to this board. I had a BMX on 12-8-2011 and was to have started chemo in Jan. However I got an infection and had to have a TE removed and so will be delayed. I chose TE's with saline because I did not want the longer surgery. I am still happy with that decision even if the left one did not work for me. I got an infection, who knows how, at 6 weeks post surgery, just when I thought eveything was going along fine. I will get it placed back in when I am done with chemo. Gonna be way lopsided thought, LOL- crater on one side and boobette on the other. I will probably opt to fill the right one so it is easier to match a fake one on the left. At first I did not realize that I was a triple +, until someone stated the + meanings on the path report. Now I get it. I am still waiting for my copy of my path report for all those details. But It should be pretty complete by now, all the testing is done, and my Onc will have a copy for me next Monday, when hopefully I will know when I start treatment. Sorry for the long post.
I am sorry, I havent read all the way through this forum yet, but I am working on it. Thanks for being here.
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