If you are not Stage IV but have questions, you may post here
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I realize the anxiety yal feel. My health is . Ibc , idc , brac 2 hers 2 pos Er pr neg stage3 b grade 3. Due to heart problems thanks to chemo. Oct 2013 had ac taxotere which had bad reaction. 3 rounds of herceptin , one taxol and one perjeta before the plug was pulled . Heart damage thanks to chemo. Went to rads twice a day then the boost for a week. Now I feel like I'm just a ticking timebomb. I was suppose to have at least a year of herceptin. I guess I feel cheated.scans keep showing more nodules and opacities, cannot rule out malignancy.. Stranding of soft tissue on on cancer Side left. Could be recurrence of cancer watch it .
Was going to tackle the what to watch for ,when a rash appeared on right side above mast scar , called last week about it knowing I was having regular scheduled. Appt with onc today .said to just wait for appt. . Over weekend found pea size lump in soft tissue above the right mast scar. . had to mark it because it is a booger to find . I have to hold my body a certain way to feel it . Also a puffiness along side right arm pit which looks to be a slight indention that outlines it. About 3 in . I called Monday and had opening Tuesday so moved me up. She thought rash was not cancer and I swear could not find the lump. And the puffiness apparently had always been there. If not so much surgery on left I would have it there too. She did scedule to see me next month but said if she had an inkling it might be something She would have it tested . Oh how she knows me . I. 62 Shes 30 something. I do love her . And I have had many Echos scans a mri, pet. Referral to. Cardiologist and surprised my heart won't come back.
So today it started itching , applied hydrocortisone and it helped . I was going to push her Tuesday for ultrasound and skin biopsy. I have yet to present anything textbook . But I backed off . But when it began itching and of course I founf the tiny lump I called and left the message I really wanted the above mentioned test. No call backs today. Sigh. I have trouble moving on. Remission I responded so good to chemo.
Also had a hysteritomy brac 2 prevention. Does skin mets present many ways And do lumps act like mine. . At some point when I have the energy (anemic) keeps going down. Anyway I will write about how this all came about on my birthday weekend . Boom out of nowhere .. Thanks for your patience if you read all this . I need to be more involved here as I have husband and sick sisters .
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There are lots of little boney bits and things around that area which are part of your make up. I know that I've felt around there on occasions and thought OMG what's that? Then felt the other side and had the same thing there, which made me feel more relieved as I realised it was just part of my make up. Hopefully, that's all it is for you
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kayb, I doubt what you're feeling has anything to do with a recurrence, but it's good that you're on top of any changes. Perhaps you could call or email your onc, describe your concern, and let him make the determination if it merits moving your appointment any sooner. I don't think it does, but hearing it from him may make a 6-week wait much less worrisome. I think lymph nodes get can get clogged or congested - especially if you've had an ALND, so have fewer nodes to do the work. But that would just be my guess -- a clogged node, or perhaps a bit of infection going on somewhere in that area.
(((Hugs))) and keep us posted! Deanna
Edited to correct a typo spotted when I reread
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Ugh. I hate being here. I'm going through a chest wall recurrence scare right now. Biopsy is tomorrow. I finished the hard-core chemo in June, had a MX with a favorable, but not complete response, in July, radiation Sept-Oct and I've been on targeted therapy since (TDM1 trial). Also started Zoladex and Femara.
If this biopsy comes back positive for cancer, does that mean I'm pretty much dead? I mean I would think that having a recurrence soon after or still on aggressive treatment would mean that the cancer is highly resistant and will just continue to spread. Is there any hope for someone who has a quick recurrence? BTW, I had a clean PET prior to starting treatment so unless mets developed in the two weeks between that and my first chemo, I know this isn't a case of undetected mets from the start.
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Bad, let's just hope and pray this is NOT a recurrence! And, no, if the biopsy comes back positive, you are not pretty much dead! It just means your medical team will have to rethink their treatment plan, but there's no reason to think one of the many other drug options ("A to Z" as my onc refers to what's available) won't put you into remission.
I'm so sorry you're dealing with this, but glad you don't have to wait very long for the biopsy. Hopefully, this is just a horrible scare!
I'll be thinking of you tomorrow. Please let us know what you find out! (((Hugs))) & prayers, Deanna
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Deanna, thank you for your response. I know people can live for a long time with recurrent and/or metastatic cancer. What worries me is if this is a recurrence, it must be very resistant to treatment because I've had EVERYTHING. And it appeared to work, given the response in my breast and nodes. That's what makes me feel doomed.
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Julio and others please do not ignore pain that last more than two to three weeks. I had pain in the sternum for about two years. I was told it was the right breast implant. I was about to have a smaller one put in but felt I needed a mammo on the left breast as it was due before removing the implant. I just wanted the sternum pain to stop hurting. I complained about it but since I was dx a few earlier with only stage 1a and had a mx they thought I was clear for a recurrence. The mammo last April showed a nodule that ended up being cancer. It did not look like previous cancers so I asked for a PET scan. The PET scan lit up like a Christmas tree. I had nodules all around the implant, numerous in the sternum (lungs, liver, bone, spine and brain). I went from stage 1a to stage iv in just a few years. I did have a bone scan done several months earlier and they checked the sternum and said it was arthritis. After MBC stage iv dx last June, I went to see my bone doctor. He said a woman with a history of breast cancer with sternum pain should have further test. He said it is rare to have pain in the sternum from arthritis. I said it is water under the bridge. He said, yeah, a lot of water under the bridge. He was angry I did not have further test in that the rad doctor took twice as long on the bone scans due to concerns. All the concerns were cancer.
To answer regarding to reacting to Herceptin. I was pulled off it by my cardio doctor, do to Herceptin side effects, heart problems). Now I have to be on it to live. Since my oncologist saw Herceptin was toxic to my heart, she put me on it again in lower doses. I go every week for Herceptin tx at 90 minutes. So far I am able to tolerate it and my EF is stable. A good oncologist will work with you to make tx work.
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Bad At,
After progression to my shoulder blade while on anastrozole for lung mets, I've gone on to Faslodex, which is for ER+ but works differently from Femara and Arimidex. There are lots of women on the Faslodex thread who have been on it for years! I looks like you've had a lot of chemo, but there are still a variety of antihormonals. My second opinion at Sloan-Kettering told me that after you've gone through several, you can start over because the cancer cells affected by a particular drug increase while you're using something else, so tumors regain sensitivity.
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Bad at users,
Thinking of you & sending positive wishes for your biopsy tomorrow.
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I think what scares me is that I've already tried out three of the four Her2 medicines. The only one left is Tykerb. So if they didn't do the trick I worry nothing will. But I just came up with the theory that, if proven malignant, this current lump may be a new primary. It's not anywhere near the original tumor. If it has a different pathology (Her2-), hormonals may be my magic bullet
I should add that I've been concerned about roving hip/pelvic/thigh discomfort I've had for several months. My onc said it didn't seem to follow mets patterns, it was so mild, and I was just too scared to deal with scans and whatnot so I dropped it and stuck my head in the sand. Of course now I'm convinced it's spread, especially knowing the stats on chest wall recurrences and mets. Plus, my recent luck with biopsies isn't exactly good (my mom had a positive biopsy for BC three weeks after my original diagnosis, then my aunt had uterine cancer last fall) so it's hard to wrap my mind around actually getting good news for a change.
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Just an update: Results came back as BENIGN! Just leftover lymph node fragments that managed to consolidate and solidify.
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That's wonderful news! Now go out and celebrate!
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Fantastic news Bad_At_Usernames! So happy for you!
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I haven't been posting for a while. I found out I my breast cancer is back this Thursday. It changed it's spots so Tamoxifen was no help. Came back as triple negative metastatic breast cancer on chest wall, skin and hot spots in lymph below that area. I kind of shut down at that point when doctor was showing the pet scan. I get my port put back in on Tuesday and chemo Thursday on Gemzar and Carboplatin. It's a three week cycle. This is happening fast. I don't even remember what I packed to take to chemo.
My doctor has me confused and I hope someone can explain. He said I was stage 3 tast time so I was still stage 3 but now with triple negative metastatic breast cancer. He also said I would always be in treatment. Am I stage 3? or 4? Also treatments would change over time. I don't know what to think as I guess I'm in shock as I had 3 years after TAC, rads, then Tamo. Any clarification would be appreciated.
I pray for all of you, Cathy0 -
Hi Cathy, so very sorry you find yourself in this situation! It is a lot to take in, for sure.
There are some threads around somewhere that explain how scientists will still call you "stage III with mets" based on your initial diagnosis, but you are now what most of us refer to as "stage IV" and you should feel free to post on this board without hesitation. I'm sorry you have to join this group, but at least we're a great bunch and will try to answer your questions and support you in any way we can.
The "always in treatment" part is true, at least except for a very few in very specific circumstances. It's basically because now that they know the cancer is active in your body outside of your breast and armpit area, they will be using different tools (meds and possibly some radiation or surgery, but mostly meds) to keep it in check. Some of the stage IV chemo and triple neg threads on this board will give you a much better idea of what to expect, but in general at stage IV, there is a better balance between side effects and quality of life than there was at stage III (or pure stage III without mets or whatever), so it should be easier to live with than it was when you had your earlier chemo and they were trying for a cure.
Please jump into any threads you'd like on these boards or start a new one and let us know what other questions you have or just to vent or get support.
((hugs)) and best wishes. I think most of us will say the initial part when everything's new is the hardest, but in time it gets easier to take in.
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dreidteacher, sorry to hear of your recent progression. Roses gives a good explanation to your questions and gives good advice to seek additional threads out for more indepth info. I don't blame you for shutting down, it's alot to deal with. You will find support and some answers here with us. Hugs and prayers to you.
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Hi Cathy and welcome although I would rather not need to welcome you to the stage IV threads.
Some docs call progression to areas other than the breast/armpit area stage IV but in truth technically that is untrue but in reality it is just semantics as the result is exactly the same. Terminology can really be confusing at times but Roses gave you a great description in this instance.
So, so sorry to need to see you on the stage IV threads but you will be made oh so welcome and meet up with some wonderful women who can help you be no quite so confused.
Love n hugs. Chrissy
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Hi. I hope it is okay that I have posted here, but I have a question regarding hypercalcemia. This is my wife's account and she is stage 3C breast cancer, but I asked her if I could post a question concerning my Mom, who just turned 69 on Saturday and was diagnosed with stage 4 breast cancer with bone metastasis about a year and a half ago. The medications that she has been taking have been working well up until about 3 or 4 months ago, but she recently had to switch to another hormone medicine because her tumor markers were climbing. Now just yesterday, my Dad had to take her into the hospital with weakness and disorientation. They have discovered that she has elevated calcium in her bloodwork. I imagine that this is due to the bones releasing excess calcium due to the cancer. Her kidneys are struggling as well. My understanding from my Dad is that they are currently giving her IV fluids to flush out the excess calcium, but she will need to go off the cancer medication and start taking a med that will counteract the bone breakdown while they get her body back in balance. I am worried about her prognosis, but have had to deal with all of this along with my wife for the last 4 years with her cancer ups and downs. Is there anyone who has some experience with this, and can lend me some of your knowledge? Thank you all for sharing with others who need help. I understand and appreciate SO MUCH that you are willing to give, even out of your own need! May God bless you all for your generosity!
Jay
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Hello Jay, elevated calcium with your Mom's symptoms is a medical emergency and she's getting appropriate treatment. You don't say which medication she is getting to lower the calcium level but there are different types such as Zometa, Aredia, Xgeva etc. My calcium level tends to go up once in a while but are controlled with Aredia with monthly infusions. My levels are monitored every month and sometimes more often when they get out of whack. People with bone mets are very often treated with these meds for bone strengthening. I'm no medical expert but other drugs are available to lower calcium levels. If she is getting one the above meds, she may experience flu-like symptoms for a few days. I hope this helps and that your Mom's condition improves quickly. Keep us posted.Linda
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Thank you for the information, Linda. I was able to get a little more information through my sister this morning, although I am not sure what medications she is getting to lower the calcium levels. My sister said that her levels were at 17 mg/dL when she was brought in, and they have now dropped to about 14 mg/dL in about a day and a half. She is still very weak and extremely tired. My understanding is that 8.5 to 10.5 mg/dL is the normal range, and anything above 13 is still considered critical.
It sounds like you were able to get back on your primary cancer medications once calcium levels returned to normal, and your levels are monitored and treated as necessary on a monthly basis. I am remaining optimistic that my Mom can get through this. Moving forward, are there symptoms that she should be aware of if her levels are going back up again, or does the monthly checkup that you have seem to keep your levels in check for the most part?
Thank you again for sharing your experience. Your knowledge of this is invaluable, and has been very encouraging to me!
Jay
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Jay - I would just like to clarify that I never had to stop my cancer meds because of calcium levels. Other than constipation and nausea I never had any other symptoms. Calcium levels can be tricky, hence regular monitoring. Sometimes, my Onc requests blood work a few days after my Aredia to ensure I am within normal levels. Note that the ionized calcium is also used as a benchmark. If my calcium level is slightly high but the ionized normal - my Onc is happy (and so am I). My kidney function is also getting a bit out of whack and my Onc is adjusting the Aredia dosage downwards because these treatments are hard on the kidneys. Always something but manageable. High calcium levels can indicate bone mets progression, but then again, my Dec bone scan showed all mets are stable (which is music to my ears!).Happy for the excellent improvement in your Mom's levels. I am very much interested to know how it goes. Invaluable info for me too.
Linda
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Thanks again Linda. I just got info from the hospital that my Mom is doing better this morning. The doctor is optimistic that they are on the right road to getting her levels under control. I will try and find out what medication they are giving her for the high calcium levels. I am guessing that she will be put on a similar monthly infusion to keep her levels from spiking again. I am breathing again! I'll keep everyone posted over the coming days.
Jay
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Hi. An update on my Mom today, and I am hoping someone can lend me some insight. Even though her calcium levels have dropped some (as far as I know, she is still above 12 mg per dL), but my Dad says that she is having increased confusion and nausea. The oncologist has ordered an MRI and/or CAT scan. From other's experience, is there something specific that they may be looking for? I am 4 hours away and want so badly to just leave work, jump in my car and go there.
Thanks.
Jay
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Sorry to hear that Jay. Unfortunately no insight from me, sorry. Maybe others will chime in soon.Linda
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Another update today. MRI came back clean for no cancer in the brain. Great news! Evidently that was their concern with the confusion symptoms. I called my Dad this evening and she has shown some good improvement since the MRI. I even had a chance to talk to her and she has been walking a bit, which I understand is really good for battling hypercalcemia. She still needs to get her appetite back and she hasn't had a bowel movement for over a week. Her kidney function is coming back and she is urinating frequently. I am cautiously optimistic that things are on track again.
I'll keep everyone posted on her progress. Thanks for all your help
Jay
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Wow, that's really good news! She's on the right track. One day at a time.Linda
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Definitely a day at a time. My sisters were at the hospital yesterday, and my Dad said that Mom seemed to perk up with them visiting. Maybe it was nice seeing a face other than the nurses and my Dad (haha)! I come from a big family (I am one of seven), so my brother and his wife are going to visit today, and my wife and I are going on Sunday. She is going to be in the hospital for awhile yet, but we are taking the small victories and celebrating every advance that our Mom takes. She is a fighter and we want many more visits with her for the foreseeable future!
Take care of yourself Linda, and have a great Valentines Day weekend!
Jay
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And to you to!Linda
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I wanted to post an update for my Mom from this last weekend. She is still in the hospital today, but it looks like she may be discharged today or tomorrow. There were some definite ups and downs over the weekend. On Friday, it looked like things were beginning to come back into balance for her, until they found that her potassium levels were low (more than likely from not being able to eat and the effects of flushing out the excess calcium over the last half a week). They began an IV, I believe, but at some point on Saturday, they had to rush her up to ICU due to the fact that she went into A-Fib with 178 beats per minute. They were able to stablize everything, and moved her back into a regular room yesterday. My wife and I visited her and Dad, and had a great time talking with them. It was good to see Mom sitting up, and talking with clear focus. She even thought that she could eat a hamburger, and who were we to say no!
She ate half of it, which was a huge step for us. She is still showing some slight elevations in her blood pressure and low hemoglobin, so they are watching those as an indicator that she can go home. She is ready to be back in her own house! I did find out some more from visiting. She is on Zometa for her bones, although I did confirm that they had taken her off of her cancer medications until her levels are balanced, and she will see her primary oncologist this week. She is taking a combination of Aromasin and another drug (which I forgot to write down). The oncologist saw progression of cancer in the femur and rib cage when taking just the Aromasin, and has some optimism that this additional drug may help stop the advancement. She has been on the new drug for only a month, and the oncologist wants to try it for at least 3 months. In talking with my Dad last night, he is concerned that another 2 months may be time critical for Mom. I told my Dad to make sure and ask alot of questions, write down questions that he might think of when the oncologist isn't around, and do not be afraid to ask for a second or even a third opinion. My Dad seems comfortable talking to me because we share the common experiences of having our loved ones going through this arduous journey, so I am thankful that he feel he can use me as an outlet.
We are so thankful for a good result today, and remain hopeful that the doctors will find the right "cocktail" to stop Mom's cancer advancement! I'll keep you all posted on things. I am going to sleep now because I haven't slept for about 36 hours! Good night.
Jay
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Oh...one more thing! I was so proud of my wife, who told my Mom last night that she would like to come and help out with Mom being home this week, and to give my Dad some support so he does not feel like he needs to do it all himself. My Mom was SO excited that she could spend some time with my wife, and my wife is energized that she can be of help! It just shows that there is SO much benefit in helping others, and supporting others, even in our own need. It reminded me again of all of you women who are going through all the things you do, yet you come on here and lend your support to each other! I believe that there is an extra blessing to you all, and I pray that you experience that blessing today!
Take care,
Jay
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