If you are not Stage IV but have questions, you may post here
Comments
-
Thnq chrissy.We are waitinng for biopsy results but the mass on the breast lit up badly with max suv=6.3.I hope all comes good. I am too much worried.
0 -
Hi Ladies
I saw the GP about 3 weeks ago and had some blood tests which I was told today were clear. I explained to the receptionist that I had still had intermittent arm pain still and what was i to do about that?
She said she would get a GP to call me and todaY, she called and said she had he letter in front of her form the Prof of onc (he must have seen the blood test results) and she said he says something like poss mets to chest wall and that I need reviewing and an MRI might be then ordered, So she says can you come into tomorrow for a thorough physical exam and I said no. meetings at work tomorrow. So she says Thursday and i said yes. so at 6 it is. She asked me about the pain: it is intermittent and sometimes goes for weeks and then is back and goes from shoulder to hands/fingers and up/down the arm (cancer side) and is a real deep pain. then it goes again.
Says she: mets pain is constant and tends to get worse over time and it doesn't sound particularly worrying. but let's have a look at you. I told her that no one had contacted me either about the Onc letter or blood tests. She apologises and says 'Yes you seem to have drifted' sorry.
The NHS here in Blighty is a real mess - but really if I had not been in touch I would have been left.
It's my eldest sons birthday today he's 24 and honestly I don't know how I stopped from crying when I spoke with him on the phone to wish him HB ; I didn't tell him about the latest.
Any thoughts any one?
Please.
0 -
Wintersocks, I'm so sorry about the worry and stress you're going through. My first thought is that I agree with the new GP -- mets pain probably would be increasing and not remain intermittent. And as sorry as I am it's happened to you, her choice of the word "drifted" is stellar and a bit amusing because it seems to put the blame on you, rather than them "dropping the ball" or letting you "slip through the cracks," more commonly used euphemisms here in the US.
So if the blood work you had is clear, I do not get where the "possible mets to chest wall" is coming from, or why IF that is a possible concern, you are being referred back to a GP. Something isn't adding up. I'm not a doctor, but the intermittent pain sounds like something possibly to do with your spine, which an MRI will divulge if they include the spine. And your onc sending you back to a GP for a complete physical doesn't sound like he is overly concerned about mets, so it just doesn't quite make sense to me.
At any rate, you are so right about needing to be our own advocates! I'm glad the new GP can see you quickly, and I hope you get an answer to your pain that has nothing to do with mets! Please keep us in the loop, and In the meantime, try to enjoy and celebrate your son's 24th birthday!
Lindahood, I'm going to offer another explanation for your friend's absence, which is simply that she might have something major aside from mbc going on in her life that's taking up her time and energy at the moment and putting seeing friends on the back burner. In other words, nothing at all to do with you personally, but she just has other demands (an illness besides her own in her family, for example) that needs the often limited amount of energy we have. The other explanation might be a sudden turn in her own health, in which case she might be totally focused on trying to get things back on a better track. I would probably just try to give it some time, but continue to communicate that she's on your mind and you look forward to getting together when she's up to it.
genny, great news on your MRI! So happy to hear all is clear and that you're feeling better!
Hugs to all, Deanna
0 -
Hi Wintersocks,
I'm so sorry you're going through this and am glad you can see your GP tomorrow.
I have to say that when I read the explanation of your pain and how it presents, my first thought was lymphedema. I imagine you've seen a lymphedema specialist - ? If you haven't, ask to be referred to one. Those of us who had lymph nodes removed and then radiation are at great risk for it. The pain my lymphedema causes is deep and intermittent, often shooting, and wearing a compression sleeve helps tremendously.
Send me a private message if you want to ask more questions about this.
I'm not stage IV but thank all of you who monitor this for us.
0 -
MRock
Thanks for this, I was wondering about lymphedema too. I did have it very mildly when I was first dx. I saw a nurse about it and she gave me a sleeve, It was so tight that I abandoned it, I didn't realise lymphedema can cause that kind of pain I just though the limb swelled. I will mention that tomorrow. I may pm you tomorrow once I have seen the GP.If that's ok. Thanks for taking he time to tell me this.
dlb823
Yes, 'drifted' is a little amusing isn't it? say 5 years ago I would have been back to the onc but the NHS is in a real state here you might have read about it. I think the Onc is advising the GP what to do next. I think it's cost cutting and it's not making me feel good. I think it will be the GP who decides whether an MRI is indicated. Thanks for this too.
So, I will update tomorrow
0 -
Hi - I am new here and posted in another thread and thought I'd also post here. I've read about 80 of the 144 pages here and have learned a lot. Thank you all for that.
My question is - has anyone ever had a bone biopsy after a suspicious MRI and PET for a bone met?
I am 15 years from a Stage 2a, 1.5cm 1/23 node IDC ER/PR/HER2+ dx. Did surgery, AC+T, rads, 18 months of Herceptin and 11 years of Arimidex (lupron then complete hysterectomy). I was 33 when dx and am 48 now.
My annual Breast MRI showed a spot on my 2nd anterior rib so Onc ordered blood work (all normal) and a PET scn. Rib was bright on PET but all else clear. It is a 5.1cm x 2.1 lesion. Onc thinks it odd to have only 1 met and for it to show up first on a rib. Also odd to be this shape and size. Hence biopsy this past Monday.
I will see him tomorrow for results and I'm just looking for any hope that this might not be Mets. Dr Google has not been helpful in finding a reasonable alternative. ☹️ Also - Ihave no pain there, no matter how hard my Onc pressed on it.
0 -
Lauren, it's very hard to say if this will turn out to be a tiny metastatic spot. Hopefully, it's not. But what might surprise you and is excellent news is -- even if it is a tiny spot of mbc, it would be considered ogliometastatic, which is not viewed the same as other metastatic recurrences, and is actually treated as curable.
I hope and pray your biopsy is negative, but I hope this information will ease your mind.
I'll check back here to follow up with you tomorrow. Hugs, and I'll be thinking of you, hoping for only good news. Deanna
0 -
Deanna - thank you so much. That gives me so much hope. I have seen that word on this site but it was new to me. I will do some reading and if I get the news tomorrow that this is Mets, I will discuss this concept with my MO and perhaps consider more aggressive treatment.
Bless you for your kind response.
Lauren
0 -
Hi Wintersocks, we hope to hear it's "just" lymphedema. I've sent you a private message. Many hugs
0 -
wintersocks-My gut reaction to your post screamed "Lymphedema".
Best, MJH
0 -
Wintersocks, I went back and reread your original post after MRock suggested lymphedema as a possibility, and agree that it very well could be that. Read up on truncal LE as well. It's not always just in an arm. And not sure if it was mentioned, but heat can exacerbate LE, so if you can connect any of the pain flares with something like hot baths or hot tub use or even an intense work out, that might be a further clue to LE. Deanna
0 -
Hi All - Well, I got the news I wasn’t wishing for but somehow I have a calm peace about it. This spot on my rib was positive for MBC. Waiting for those results was torture and I am one who likes to have a clear plan in place.
Deanna - you were dead on in your analysis and My MO is treating it as oligiometestatic (sp?). He wants to radiate it even though I have no pain, along with hormonal and targeted therapy.
Thanks so much for your support!
Lauren
0 -
I finished chemo a couple weeks ago but am concerned about this growing spot on my leg. It's not painful. Itches only a tiny bit. Blanchable. Not a bruise. Is this a skin met? I'm confused/concerned. Any experience/feedback on this would be appreciated. Thank you. Top picture Jan 29. Bottom picture today 2/150 -
I am certainly not an expert, but this looks like contact dermatitis (allergy to something that touched the skin) or an infection to me. I get contact dermatitis all the time and it looks exactly like that. Try an OTC hydrocortisone cream and see if it clears up.
I don’t think skin Mets are likely to show up on a leg. I have only ever read about them on or near the scar and perhaps also on the scalp. Maybe ask your MO or a dermatologist.
0 -
Lauren, I’m so sorry. Your outcome is never what any of us wants to hear. But it sounds like you have an excellent onc and are handling the situation as well as can be expected. Feel free to continue to reach out to us if we can help. And just know that many women in your situation quickly reach NED and stay there.
0 -
there is no cure. Don't know why people use the word curable. Ned is the best case outcome for the rest of our lives, any stage...
0 -
Dear Ladies
Thanks for your thoughts, I saw the GP and she said nothing looked amiss after a physical exam; but she wanted to refer me back to the onc within the next 2 weeks, She turned the computer round to show me what he had written and I could only see 'poss mets to Brachial plexus' - which is a bundle of nerves I think in the general breast/ shoulder area.
The Gp said she did not think it was mets as it was not getting worse and I can go for a few weeks with no pain at all then it comes back. In his notes he wrote I may need a bone scan with isotope?? Meanwhile she has put me on amitriptyline to help with the pain. All my blood tests are normal = I don't know what to think now!
0 -
I got copy of my mom's pet/ct report.Can anyone explain me about the lung nodules.Breast lesion was confirmed as Fat necrosis by needle core biopsy.But the lung nodules are suspicious for mets.She has atleast 10 nodules in bilateral lungs all are smaller than 5mm-6mm.Is there chance that it is mets??All are ground glass nodules.
0 -
Katie, lung nodules are VERY common. If you give the person on the street a PET/CT it is likely they'll find nodules. I have one and it hasn't grown in 10 years so it's not cancer.
The nodules can be inflammatory, or infectious or some other kind of cause. What doctors usually do is wait for 3-6 months then scan again. If they haven't grown they aren't cancer.
The wife of a colleague of mine had this problem. A whole bunch of lung nodules. They did all sorts of tests and never did figure out what caused them. Eventually (a year later?) they disappeared from the scans.
So they may not be cancer, particularly if the breast lesion was nothing.
0 -
Thnq pajim.My mom diagnosed stage 3 tnbc in May 2015.That was her first pet/ct scan.Bilateral lung nodules were found on this.
0 -
Hi there, I had CTs, bone scans, brain MRI and heart test prior to starting FEC-D regime yesterday. Scans all clear with the exception of lesions in liver that are not suspected as cancer. I agree the lung nodules are something else. The FEC-D regime is a heavy dose of chemo. My oncologist told me we are going to hit this hard and breast care nurse said the same - using the big gun!
I think the comment about not going straight to FEC-D means if your wife had mestateses further afield e.g. in lung the diagnosis would be stage IV then treatment becomes palliative. Aggressive chemo would not be be the best choice first up.
My stage is 2b with lymph node involvement triple negative. My tumour is small but because of triple neg and the node the chosen regime is FEC-D. It appears FEC-D is not a commonly used regime in the USA...
Re lung nods is aquestion for your next consult just so you are clear. I have found myself with many follow up questions and keep a book to write then down.
PS. Yesterday day one I felt YUK, headache and waves of naesea, slept on and off with several periods of wakefulness but this morning so far slight heache but that's it. Mind you I haven't gotten out of bed yet!
Wishing your wife and you good luck on FEC-D. Love to hear how it goes....
Helen.
0 -
Katie, I understand your worry particularly if she was triple negative. But if the docs suggest waiting and scanning again in three months that's reasonable. If they want to try and biopsy one of the lung nodules that's reasonable too.
The recommendation could mean either (a) follow-up scan at some interval or (b) have some other kind of scan -- I guess a CT scan. But that's probably not going to tell you anything more.
Remember that in these days of litigation the radiologists will point out every last ditzel. They don't want to be accused of missing something. BUT they say the nodules are not FDG-avid. Ergo they are not made of fast-growing cells and are unlikely to be cancer. The higher the FDG uptake, the faster the cells are replicating.
0 -
thnq Pajim for your taking time to reply.The right lung nodules are not fdg avid. But the left lung nodules have shown mild fdg uptake as you can read in the report.Also these fdg avid lung nodules are pleural based.
I also met with her pulmonologist to consult about lung nodules.And he simply told that he can not do anything with these nodules.Because of the size and location
0 -
Hello again, I dropped out of the conversation because I didn't have my setting set to tell me that some of you thoughtful people responded to my question. Thanks to LEAPFROG, MJHJAN and DLB for your insights.
I have finally had a chance to reconnect and it was a bit of what all of you said. My friend is in pain, not very mobile, can't drive and is tired of talking about cancer. It was so helpful to read what you all wrote even if it was after the fact. So I thank you again.
indahood
0 -
indahood, I'm so glad you were able to connect with your friend, although sorry to hear about her situation. As you may realize, mbc isn't always a straight decline. Situations can and do improve, especially if a med is failing and a new one ends up working much better, even for a few months. Hopefully your friend has some better times ahead, and perhaps you can continue to stay in touch with her, especially if you have wonderful past stories to relive with her. Also, since she can't drive -- and assuming you're in the same area -- is there anywhere she might like to go that you could take her -- the beach, the mountains, the town she grew up in -- or anywhere she may be reluctant to come right out and ask someone to drive her? I think that would just be such a lovely gift if she's not very mobile but well enough for a few hours out of the house.
0 -
Hi Everyone,
My mom was diagnosed with ILC a couple of months ago and had her surgery back in late-January. She recovered amazingly and recently just had her appointment with an oncologist to discuss treatment plan. It looks they are recommending chemo (Taxotere and Cytoxan) + radiation therapy 6 weeks after her 4 rounds of chemo. I've heard so many different stories of chemo and it all varies, but obviously my mom is nervous and considering just doing radiation. Is it worth getting a 2nd opinion? I feel like most doctors would say that chemo is something she should get given her diagnosis.
For reference, they originally thought she had 2 tumors, one almost 5 cm and others were around 2-3 I think. Turned out they were connected and it was actually 10 cm! But I've heard this is not totally uncommon with ILC. Her pathology seemed good though, nodes were all negative and margins were clear. But stage is 3 because of the size of the tumor.
She is getting a bone scan today, does anyone have experience/knowledge of having bone mets but with negative lymph nodes?
Thanks everyone!J.
0 -
Hi, Johnny. I'm sorry about your Mom's dx, but just with the little you've shared here (ILC, large tumor), chemo does sound necessary. But a second opinion IMO is never a waste of time, as all oncs do not think alike, and some just have different ways of communicating the same info' that gives us a lot more clarity and understanding about the recommendation at hand. And if your Mom isn't already at an NCI-designated facility, that would be my first choice -- just because they are exceedingly thorough, they see the most breast cancer patients, so will have the most expertise re. her particular subset of patients (her age, ILC, any pre-existing conditions, etc.), and they are on top of the latest research because they're the institutions doing it.
As far as mets without positive nodes -- yes, it happens because bc cells can also travel via blood. However, what I've observed is that it tends to happen later. In other words, someone had bc 5 or 10 years ago, turns up with metastatic disease, and is dismayed because it wasn't ever in a lymph node. However, new research is showing that bc cells can and do travel to and seed in distant sites without positive nodes, so all the more reason for a recommendation for systemic tx, because with a large tumor, it's probably been there long enough for this to potentially happen, depending on the aggressiveness of the cells.
Hope this helps. I hope even more your Mom's bone scan is totally clear, as I think it will be. And let me give you a link to the list of NCI-designated cancer centers.
https://www.cancer.gov/research/nci-role/cancer-ce...
Please keep us posted! It's wonderful that you are reaching out and supporting her this way! Deanna
0 -
Thank you Deanna! This is incredibly helpful. I think my mother will go through with the chemo. I actually live in Canada so not sure if the NCI designation is applicable here? But thank you for sharing that link.
The bone scan is my biggest worry right now, but will stay positive until we get the results. The cancer was deemed as pretty slow moving but was very large so who knows.
Thanks again and I hope you are staying strong and fighting the good fight!
J.
0 -
Indahood...glad we could help you. I agree with dlb. The worst part of being Stage IV with bone mets for me is that I'm not independent at the moment because of the amount of pain killers I need for the awful pain. Your friend might appreciate being taken out. On the other hand, she might find it painful sitting in a car. I take two cushions wrapped in plastic bags, one for each foot, to brace my feet against the floor of the car and I have one behind my back plus a neck guard and then I'm fine and we have a a (I think you in the US call them SUV) which is really comfortable with a soft ride so be prepared for her to not want to be driven or to take lots of cushions since she's in pain. Perhaps she might just like to sit outside with you for company but without talking. Take your lead from her but, yes, don't talk cancer. For me, I'm totally sick of it and just want to talk about normal things. I'm still me. I'm not defined by my illness. It's great that you want to help her because some of us find that the friends who helped in the early days drop away after about a year if nothing dramatic is happening and a fresh face would be great. Good luck xx
0 -
Thanks again DLB for the advice. I have for sure offered to go for a drive with her and I know it does me well too. At the moment she hasn't been into it but I'll keep offering. I know with my own cancer and since I am going through the chemo at the moment, I know I feel different on a day to day basis, and friends who don't give up are a blessing.
Blessings on your journey
indahood
0
