If you are not Stage IV but have questions, you may post here
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I have never heard of preventative rads! That would have me confused too.
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I'm being told and also through some reasearch I've done myself that the next stop for mets to present is brain mets with being lung and HER positive. Chemo doesn't break the blood brain barrier so if micro mets are there they wouldn't be wiped out that way. CT scan didn't show any thing and I can't have an MRI right now because I still have my TE in. I was hoping to have already completed by recon by now but all this kicked up in July. So its like should I be grateful that this is an option or what??? I was so bowled over when my MO told me the positive news 3 weeks ago I never thought to ask about staging. Then I met with the RO a week ago. scheduled the mask fitting and rads TX and figured I could get some answers in the meanwhile
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I can't specifically speak to the preventative end, except to suspect they may want to do it since lots of us HER2 gals/guys can develop brain mets. I was a brain met only person.
WBR is doable with a few things added. If you do it, be aware you will lose any hair you may have. You may be put on steroids, though if you do not have brain swelling, you could probably wean off sooner. Biggest SE's are fatigue, nausea while getting. The fatigue will last a couple of months, rest a lot. Get ranitidine for stomach protection.
Since you are not having neurological issues ie headaches, seizures etc, you should have good results. Normally, those issues can get worse before getting better. I did not have any issues, so treatment was doable. There may be some short term memory loss. My experience a couple months out is that it no different than chemo. Making lists makes all the difference.
If your onc thinks this is needed, it is worth considering. Better than waiting for lesions to possibly show up and cause neuro issues. FYI, please do visit Brain Mets Sisters. A few of us have had WBR with good results. Good place for any other questions about it.
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Thanks Mara51506
I wonder if the dose is low with prevenative vs not.. No mention of Steroids at all or nausea meds either. Yes was advised about the hair loss. Damn and it was just growing back. Hopefully it will again. Edited to add that I did well with the 6 doses I received in July for the heart tumor. Had some fatigue but that was about it for SE's
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But what are they zapping? There must be something they are aiming for.... I just don't see how radiation now can prevent brain mets later.
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Okay, I've read up (Googled) some cases of "preventative" WBR but am still concerned for you. There see to be issues of cognitive difficulty afterwards, I just can't imagine. I am currently being checked for brain mets and wonder if they offered me wbr if I would even do it without a definite diagnosis! There ARE chemos that cross the blood/brain barrier that must surely be less invasive.
From what I remember when Frankie had WBR, she only lost her hair where the zaps went. The rest stayed.
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Barbe1958. Because my lung cancer was small cell carcinoma the next stop is brain mets in all liklihood for me I;m being told. PCI is now the standard of care in preventing or prolonging the DX of brain mets if a patient has had a complete response to TX for SCC. They're could already be micro mets lurking that chemo can't get to because of the blood brain barrier. My HER DX also plays a role in being at a higher risk for mets to the brain.
I have to say though I'm kind of freaking out thinking about SE's long term but then again if I don't go the PCI route and and DX with brain mets I'll be kicking myself
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MyLeftBoob - I'm with Barbe. i would definitely get a second opinion. It was my understanding that BC mets usually to go lungs, liver, bones or brain but I haven't heard of preventative rads.
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I'm going to call my RO in the morning (or his nurse). Would I be correct that if I have PCI that in the event I do somehow get DX with brain mets down the road that I wouldn't be able to have WBR? You can only have radiation in one area one time right?
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MyLeftBoob - do you have an MO (medical oncologist)? I would guess calling an RO would include discussions about radiation, but you need to discuss other issues too.
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I found a great article, I hope this links: http://theoncologist.alphamedpress.org/content/5/4...
It is a very, very small dose daily of max 2 gys up to a total of 25-40. If you consider that I just had 9,500 gys to my chest wall, neck and left axillae, it does seem to be a very small amount. Is it worth it??
What I understand you saying is that your lung cancer was NOT breast cancer, right? So you have both the risk of lung AND breast cancer mets to brain. Do I have that correct? I'm getting it now....
The article does say it doesn't help morbidity. In other words, you still have the same death risk, it just delays the final diagnosis. Tough call, sweetie. I'd like a panel to discuss my case, as I'm sure your's has.
Your hair will not grow back where they zap. My heart goes out to you, gentle hugs.
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MLB, this sounds like a situation where getting expert advice including a second opinion, and individualizing treatment, is essential. One thought, maybe a silly one, but could you choose to have the TE removed in order to get a brain MRI?
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I'm having the same MRI issue as I have a non-compliant pacemaker and can't get an MRI. They won't change it out unless I had an infection as the surgery to get the leads out is pretty invasive. So I'm getting a cerebral CT angiography on Dec 7th and a 4th CT in February if the Dec one doesn't highlight what we need to see.
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Minus Two and Barb1958. I did speak to both my MO and the SR MO, the attending MO and my RO and they're all highly recommending it and I do in particular totally respect my MO and the Sr.'s MO's opinions. I also have 2 friends that are stage IV and they said they would do it in a heartbeat. Particuarly one gal who mets to lung, liver and bone where treatment is no longer working for her and she doesn't have this option. So I am reaching out everywhere for opinions and feedback. I read that article Barb1958 among others but I appreciate you sending the link.
Shetland Pony
I've actually called my plastic surgeon to see if she could do the swap out in the very near future for that very reason. I was going to have a lift to the good side but I'll just leave that alone. Why bother really.
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Glad to hear you have good trust MLB.
WBR is a fairly hot button topic, there are those of us who support it, those who do not. A lot of articles will say it is heavy handed. My feeling is that not enough good results are reported and there is a great deal of fear. I had the same fear myself, but would have kicked myself as well if I did not do it and got more mets sooner. There are no guarantees on anything.
You could ask RO about hippocampus sparing radiation and/or taking the alzheimer drug Namenda which is clinically shown to lower the possible cognitive decline with few SE's.
I think you will have some good questions for you RO/MO, I totally see why they want to do it between the Her2 and the lung cancer. It would be a good chance to lower the odds of mets. Good luck with whatever you decide. I also know that some considerations have to do with what OHIP will cover. Glad you trust your team. I trust my MO as well to know what would be best given the likelihood and risk of future mets based on your dx. Some of the advice offered by others may have added more for you to ask about, that is always good.
Re the hair not growing back, it can and usually does grow back. See recent picture of SusaninSF on the brain mets thread, link is below. Though there is a small risk of it not coming back full or at all, to say it WON'T grow back simply isn't true.
https://community.breastcancer.org/forum/8/topics/777599?page=166
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Mara
You read my mind I think. I actually just made a note about hippocampus sparing to ask about that. I'm also going to do some more reading here about WBR, I didn't realize it was a hot button topic. I just came back to BCO a couple of days ago actually so need to spend more time reading through the threads.
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No problem. I made it sound like censorship. WBR just elicits strong opinions both pro and con. Glad I was able to help with an extra question to ask. Keep us posted on the brainmets thread what you decide.
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MLF I hope you understand we post out of concern and to gain knowledge. As you said, you wanted feedback. All is not rainbows and unicorns farts here. This is where the rubber hits the road. There are others reading these posts learning off your experience and our questions. It's all good.
About the comment of permanent hair loss I've only known of 6 or so friends here that had WBR and none had their hair growt back. My underarm hair isn't growing back and my RO told me to not expect it to. Pardon my ignorance.
I am still confused about your stage 4 friends wanting WBR. I am Stage IV myself and am holding out on something like that as long as possible. And certainly not before mets is confirmed. I do believe it is VERY effective and pray it all works out for you.
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Barb
I do totally want the feedback, good, bad all of it Since I've posted yesterday I've call my RO's nurse with questions and made a further list for today. What my 2 friends eluded to was if PCI was an option for them to prevent brain mets, they said they would do it. I spent a couple of hours reading through the posts on the Brain Mets Sister Thread and I've hardley scratched the surface but I'm going to keep on reading over the weekend.
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Good morning.
I am the youngest daughter of three and we are all trying to pull together to pay for my moms next round of chemo. Please visit the link below. Have a blessed day.
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So I found a pea sized lump a little while ago (just next to my implant). Saw my surgical oncologist today and showed it to him. He said if I hadn't shown him he would not have noticed it. He did feel it but said it was very small (size of a pea) and so it probably wouldn't show up on an ultrasound or they wouldn't be able to tell what it was. He said it didnt seem "serious" and could just be a gland, but that's also what he said about my original tumour. He said to just watch it and to go back in 4 months or sooner if it gets any bigger. It wasn't very reassuring but also not negative. Does this sound right?
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Very common to take the wait and see approach. He's looking for growth or for it to resolve itself. Also, your period can make a difference too. I think pea sized would show up on ultrasound...how small are the peas where you live? LOL
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Stephanie, I'm not in Canada, so don't know how followup protocols may vary from here, but If that pea sized thing continues to bother you, I would ask your medical onc about it. There are several things it could be, including scar tissue or a simple cyst. But why worry about it for the next 4 mos. if an ultrasound or MRI could reassure you? I would favor bugging someone for some sort of imaging, not only to be on the safe side, but for peace of mind. No one except me could feel my original lesion, which gave me false reassurance for many months that it was nothing. You have a bc hx. Unlike something in your lung, for example, or other difficult place to do anything, where a wait & see approach makes sense. I wouldn't be comfortable w/the wait & see approach, as even something benign probably isn't going to go away on its own, so why wait around And if you don't try to image it now, how will anyone know for sure if it's changed? (((Hugs))) Deanna
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Stephanie, I am with dlb. Sometimes we have to keep bugging due to limitations of our free health care. Hopefully it is benign, but you should NOT have to wait for months. Keep pushing for a test until they give you one. Good luck. I hope it will be benign.
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thanks guys, I agree with you. I am scheduled to see my medical onc next Monday so I will ask him for some sort of imaging (unless it's gone). I needed to hear that from others, was beginning to think I'm being overly cautious.
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Stephaniegee. I would push too. Pea size is big in my book. Why wait months when it can be check out ASAP.
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I had stage 1 IDC in May of this year. They found 4 tumors/ lesions (don't know what they called it exactly). They were small and mixed type but it was still stage 1. I did have a BMX in June so all the cancer is gone. They did ct scans and I'm clear. I am finding that I'm utterly exhausted now. I didn't have chemo or radiation so it's not that. But I really cant function. Has anyone seen BC become stage 4 within 6 months and have you seen fatigue be the only symptom
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Even though you did not have chemo or radiation, that does not mean with the cancer and surgeries you have had and will have that your body has not been through a lot. Fatigue can also be part of being dx with cancer, early stage does not mean much less stress than a more advanced age you would have been, and still are dealing with it. You probably still are dealing with tissue expanders being filled, that is also taxing too. These things alone can account for fatigue.
I cannot say I have never heard of an early stage cancer being found later to be advanced. It can happen. In no way am I stating that is the case with you, but it is a very good idea to mention the fatigue and your concerns to your doctor looking after you. If you don't have an oncologist, go through whoever is taking care of your breasts or even a family doc. Keep an open line of communication and if you feel you need it, keep up on scans.
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Hi Mom2fourplusmore. I know that you feel the exhaustion and it takes you to dark places but really it's your body just trying to recover from massive surgery. Having a double mastectomy is a huge surgery and leaves your body with huge wounds under the skin that it needs to repair and then you had a foreign body replace your breasts which your body has to work to accept.
I think what you are feeling is very normal for what you have undergone. Please give yourself time as I think you will find that it most unlikely that you would be stage IV.
Love n hugs. Chrissy
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Mom2four, in addition to just needing more time to heal physically, as Chrissy and Mara suggested, don't overlook what an emotional shock just having a bc dx and tx can be -- to the point that PTSD is quite common amongst survivors. If you don't rally with some extra time and self-TLC, be sure to get a total work up for things like thyroid function. Low thyroid is also very common amongst those dx'd with bc.
PTSD can manifest in several ways, including having low energy and just feeling "flat," with no enthusiam for life. Here's a link to a recent thread on the topic. Not suggesting this is the total cause of your exhaustion, but even a touch of it can greatly magnify physical fatigue. (((Hugs))) Deanna
https://community.breastcancer.org/forum/102/topic...
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