If you are not Stage IV but have questions, you may post here
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Thanks. I'll be seeing my PCP next week anyway - I'm supposed to have my exchange next Thursday and I'm hoping this doesn't push that off.
It's great that you started this thread. I feel like I've got my feet in two separate worlds now - the 'normal/healthy' and the 'what if/what's in store.' You all are good guides along the way here.
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Chrissy and other Stage IV ladies that chime in.....bless you for this. It is a wonderful thing that you are doing for those of us who are NOT where you are but still have our fears and concerns. I appreciate it so much.
I'll try to make this short. I am triple negative and have had the "beast" twice. First in 2007, 1.2cm tumor and no positive nodes. I had a lumpectomy, chemo (Taxotere and Cytoxan) 4 rounds (once every 3 weeks), and radiation (33 rads). I had great odds of it never returning and had just gone past 4 years from my date of diagnosis.....4 years, 1 month and 2 days to be exact......and there it is again. We did a stereotactic biopsy and found IDC again. Tri-neg again. 3.2cm this time. Didn't even show on the mammo from the year before so it grew pretty fast. Had BMX and DIEP reconstruction and nothing else. They discussed AC with me but I said no. I said I didn't trust the chemo because it was supposed to take care of this before. Couldn't do rads again. So I am spinning in the wind.....waiting for the "beast" to come back again. My question is.....and only because I am second-guessing myself now.......should I have done chemo anyway? I was still only Stage 2 and I feel a little silly about worrying about this. However, I thought I was in the clear the first time. And now because of a recurrence within 5 years they have put me at 40% chance of it coming back again. I know, I know....that means 60% chance that it won't. And I am already taking Lexapro for menopause symptoms.
Just tell me what you think....that's all I want to know. And I am currently reading "Dancing in Limbo" which is helping my anxiety but it will be a while before it totally goes away....I know me. I am trying my best to LIVE in the here and now but this nagging voice in the back of my mind won't leave me alone!
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I forgot to say that I've never had any positive nodes, either time. Also both times I was a grade 3.
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Chemo will help put it off for a while. And 60% chance for good. Was chemo so very bad last time? There seem to be many options for those of you with triple neg bc. Maybe the onc can come up with something that would not be as bad if it was horrendous last time. Just because you said no at one point doesn't mean that you can not continue to explore and choose options.
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Rachelvk, We all get worried with anything new, however sometimes we forget we also have family doctors. I still see my family doctor a lot for some of the side effect things. If it does get cancer related they call your oncologists and get you started. That happened to me.
wrsmith, we always second guess our decisions. You can always go back and do chemo if it will help you feel better. This is really your personal choice and not for us to decide. Not having nodes does not change the 40/60%.
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My mom is in stage IV. I'm pretty scared. I think I'm in denial. My siblings and dad think there isn't much time now. I keep thinking there is hope. Am I being a fool?
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Velociraptor, there is always hope. What have her Drs said? Even with hope, though, now is the time to maximize your time with your Mom. Whether she has weeks, months or years, enjoy each other as much as you can.
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velociraptor - my aunt lived with stage IV for almost 15 years, so there's always hope.
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velociraptor - a stage IV dx is very scary and often the first thought is that there is not much time. Many women live comfortable with stage IV bc for many years. I hope that your mom is doing well and that she is able to be with you for years to come.
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Kayb ~ I found the brain MRI to be WAY easier than my breast MRI. It only took about 15-20 minutes (as opposed to 45 mins for the breast one), and it was far more comfortable because you lay on your back and don't have to hold your arms over your head!
The contrast is quick and painless, administered through an IV. The biggest nuisance is the noise, but even that is no big deal. You'll be in and out in no time!SAN
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Honestly. I have had both. I fell asleep in both... But the brain one is easier positionally, and much shorter.
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kayb, you can drive yourself. If you don't want to wait you can go to medical records and get the report and already know what it says before you go to the oncologist.
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Hi Ladies
My mum has liver (2 spots), lung (1cm and a bunch of small spots) and bone (femur is almost or may already be fractured!) mets and is TN. All nodes were positive but they couldnt remove the ones on top of her arm so shes getting rad there and on her leg, and chemo as well starts next week.
The bone mets is definitely advanced. What kind of hope do we have? Otherwise she seems fine - no nausea, vomiting, jaundice, no coughing or difficulty breathing. And she recovered great from her mastectomy. Am I in denial?
She's only 60. I still need her around. I'm not ready for this. She was cancer free for almost 3 years.
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Hi Velocirapter. I'm so sorry to hear that your mom has had progression and gone to stage IV. That is indeed the hardest thing to hear. Being TN will make her treatments harder to take as it will be chemo as she would not respond to the hormonals but there is every hope that she will respond to the chemo and be well for a long time.
Unfortunately no one can tell how long that will be, all we can do is make the most of every second that we are given and then there can be no regets.
If you have any more questions please just ask.
Love n hugs. Chrissy
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Thanks Chrissy. I am worried now most about her comfort. She is in a lot of pain in her leg. It really advanced quickly. They have put her on gabapentin and are afraid she may already have a fracture. She had planned on being active during chemo and now she's worried about injuring herself further.
I don't want to lose my mum, but I also don't want her in pain. She has always been an active vibrant woman so this is affecting her mood as well.
At what point do you need to start thinking about comfort vs quantity? I always thought that bone mets werent as bad as a met on an organ, but now that I've seen how much her pain is increasing every day and have read more about how bone mets can progress, I'm most afraid of this one.
This sucks.
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Velociraptor, has your mother seen a palliative care specialist? This is NOT hospice - these folks help improve quality of life for ANYONE who has a life-changing disease, not just someone who may die in 6 months (that's hospice), including folks with heart failure, COPD, and cancer at ANY stage. I think you are very sensitive to your mom's needs - it's not just about quantity but also quality of life, and working with a palliative care specialist can help a lot. I don't think anyone who has NOT experienced the pain and fatigue of cancer can ever really "get it" - I know I did not understand my best friend who kept saying she was "so tired" after chemo for ovarian cancer - she had been out of treatment for several months and I just could not understand why she was still complaining. Now I KNOW. I know the fatigue is NOT the same as the fatigue I have had when I was healthy, and the pain is NOT the kind of pain that you can even describe to someone who has not had it. I really depend on my PCP (who is a palliative care specialist as well) and my integrative health care team to keep me comfortable physically, mentally, and spiritually. My own mother is a 17+ year survivor, and I know how precious the time with her has been, and am grateful fo it. Blessings to you and your mom.
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I agree with Linda and the palliative care.
They sometimes do radiation for bone mets or surgery if the bone is already fx. That nwould help her pain.
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as a breast cancer survivor, i am always concerned of my fellow sisters still fighting. i just read about a smart bomb... that has increased the survival rate of those in urgent need. anyone hear of it.
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Thanks for posting that Helen, it is very interesting. Because it is herceptin based it seems that it is targeting the Her2+ but it will be interesting to watch and see what happens.
Love n hugs. Chrissy
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Over the last couple of months I have noticed the following symptoms:
Abdominal pressure, fullness, swelling or bloatingPelvic discomfort or painPersistent indigestion, gas or nauseaChanges in bowel habits, such as constipationChanges in bladder habits, including a frequent need to urinateLoss of appetite or quickly feeling fullIncreased abdominal girth or clothes fitting tighter around your waistA persistent lack of energyLow back painI am very concerned. Has anyone had metastasis to their ovaries from stage 3C? And did you have these symptoms beforehand? I have my scans coming up in two days. I am so scared.
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Hi Sharon, take a deep breath and let it out slowly...... that whole list of symptoms can all be put down to the meds that you take and the anxiety you are feeling about your up coming scans.
I would mention them to your doc and ask if he could give you something or recommend something that will give you some relief.
Good luck with your scans and please let us know the results.
Love n hugs. Chrissy
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Sharon, discuss a prophylactic ooph so you won't have to worry about this. As far as I know, it is pretty standard to do this in cases of locally advanced ILC. I had it done with da Vinci surgery and it was no big deal.
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My best friend was dx'd with her primary bc 15 years ago when we were just 31. I guess it was pretty likely she's have mets someday since she was so young.
Last month she got the bad news that the extreme lower back pain she'd been having wasn't just a pinched nerve but was actually mets to the bone. She had at least 3 fractures and scans have shown she has tumors all the way up her spine and on her skull. It's pretty alarming.
The first concern was dealing with the pain which was being caused by the fractures pinching her nerves. They did a surgery to inject a substance into the bones and she experienced immediate relief.
Next she began 10 days of radiation to a large area which has resulted in severe nausea and weight loss of 15 lbs. The dr thinks she should've recovered from the nausea by now so is sending her to a GI dr.
Which brings me to why I'm posting here... I discovered this site in December when I was undergoing tests for bc. I know it was very helpful to me... but I was receiving a lot of encouraging info here that made me confident that my results would be negative, which they were. I thought it might be helpful for her to come here and be with people who can really relate. But, I don't know quite how to approach it.
Also, I've been trying to understand if mets to the bone automatically makes it Stage IV. I don't feel comfortable asking her such technical questions when what she really needs from me is just a listening ear. I'm just really confused about some of this terminology and what it means to her prognosis.
And finally, is it very unusual among those here to have so many tumors as my friend has?
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Hi Frazzledmom. I'ts good to hear that your troubles turned out negative but so sorry to hear about your friend.
I'm sorry to say that yes, she would now be stage IV as the cancer has metastesized to a distant place outside the breast. Having a lot of mets to the bone can indeed happen and quite often does and there may come a time when there will be more. As for her prognosis, well unfortunately she will now be on some form of treatment but no one knows nor can they tell you exactly how long a person has. If she responds well to treatment it is not out of the realms of possibility that she live for a long time.
To suggest she might like to come to this forum perhaps could be approached by letting her know how well it helped you and she may like to check it out. To read, she does not need to register or join but if she would like to pose a question she will need to join.
I hope this has answered some of your questions.
Love n hugs to you and your friend. Chrissy
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SRB- I understand your fears. I am IIIc also and my PET scan said I had what appeared to be ovarian cysts. I still don't trust it because that is one place Lobular likes to go, so when I have my TE exchange the ovaries are going out with them. I have similar symptoms and they said mine were cysts so I will prayer that it is the same for you.
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Hi all you amazing women warriors! I am not a stage IV (was dx at IIb) but as I await getting x-rays and a possible bone scan done day after tomorrow, I have some questions for y'all. I have been diagnosed with TNBC (detailed dx is below in my signature) and completed 8 x dose-dense ACT in January and 33 rads + 5 boosts in April and in the last month, have been experiencing pain from my tailbone, down through my hips and thighs (right side more predominantly). In the last couple of weeks, the fates have decided to add some upper rib pain about a hand-width from my armpit on the right side, just for giggles. Sometimes it is a dull ache but at other times, I have to take a lortab with 800mg Ibuprofen to relax. I will admit that I am a bit concerned and would like to hear from those of you who have experienced bone mets yourselves. Thank you in advance...
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Thanks a bunch Chrissyb. We'll see how things go. I feel a little more informed now.
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mmizerak, sorry to hear you're having pain in your bones. It could be from your meds, or from other causes, but if you're concerned about bone mets, ask for a bone scan.
My bone mets didn't really bother me until I started exercising quite hard, and then suffered from a compressed vertebra. I had pain in my chest (from my ribs) and in my upper back. X-rays showed nothing, but the MRI showed all the mets. Later I had a bone scan, which showed small scattered mets throughout my ribs, spine and hips. I hope your pain is nothing, but to be sure, ask for a scan.
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I have a few bone mets and wouldn't have had a clue without the scan. They don't bother me at all. I've even messed with the area after I had a bone biopsy to see if I could make it feel different so I would be able to tell if it showed up in other places. I got nada.
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Sandilee and Stormynyte ~
Thank you so much for your input. I already have an appointment scheduled for Thursday but was just needing some insight before then. They are starting with x-rays of my chest and hip areas and wil decide on the bone scan and/or PET scan after those and the exam are completed. I have racked my brain to try and explain things another way and simply can't. I was going to wait until my next 3-mo. check on July 27th but my husband flipped and made me promise I would go in before that. When I was diagnosed, my tumor was classed at a Grade III with a 75% Ki-67 proliferation and in the 2 weeks from biopsy to surgery, it had doubled in size (taking me from a stage I to a stage II) so he was not going to wait and see what happened after 2 months. I can't blame him but I just don't want to be paranoid and calling my MO every time I feel a new twinge!
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