TRIPLE POSITIVE GROUP
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Went for my every 6 month dermatology skin check today - I have had a lot of skin cancer removed, like 20 of them. I thought all was fine but they found three places on my back - so I have 3 new biopsy sites - none of which I can reach, and DH and DD are out of town all week. I am pretty sure I can't train the dog to treat the spots in the next several days, lol! The latest development is a spot on the rim of my lower eyelid, just above the lashes - I have to go next week for a possible biopsy of that - fun times!!! Also, DH just flew up to Washington, D.C. this morning for a Pentagon visit - very bad timing. I imagine his day was complicated, but thank goodness he was not going to the Navy Yard. We were stationed at Fairchild AFB in 1994 when they had a hospital shooting there (DH was the Wing Exec Officer) 6 dead, including the gunman, 22 injured, including one whole family with gunshot wounds. So sad for all.
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Welcome Carolyn, this is a great board, but I am sad that you have to join us.
Special, if it's not one thing it is another
Sounds like you will have a few more scars to add to the collection.Ashla, I am so sorry that your sister has now been Dx'd. I am sure you willbe a great comfort and encouragement to her.
Pbrain, it looks like you might be one of the lucky ones who loses weight on Arimidex! It is always nice to find something positive on this journey.
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Bren - I am a fleepin' road map, lol! I had 8 breast cancer surgeries, not counting the biopsy, but I have had 8 surgeries prior to being diagnosed with BC and that does not include the skin cancer surgeries - a number of those involved stitches, so not necessarily simple ones! I have an incision line right next to my port that everyone assumes was from port installation - nope, skin cancer! I am a bit nervous about the eyelid though - I really, really don't want to have it biopsied, but I will if they say I have to.
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SpecialK - I had a mole removed from my upper eyelash line (it was making my eyelashes grow crooked). I had it done by an opthamalogist who also was board certified in plastic surgery...as I was really afraid of scarring/lash loss. Just an FYI that if you can, you may want to research the type of surgeon doing this biopsy.
They put numbing drops in my eye so that I wouldn't be bothered by the work around my eye. It was much easier than I expected, minimal pain post. I did look like I had a shiner, though, for a few days!
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dance - that is exactly the kind of doc the derm has referred me to, an oculofacial plastic and reconstructive surgeon - glad to hear it was not as scary as it sounds! The bad part for me is the possibility that it is cancerous.
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Special K, I saw a derm doc for the first time while I was in the Lower 48 recently for a spreading rash that is really hounding me, so I'm sporting 3 bx sets of stiches on my back and derriere.... getting steroid lotion spread "thinly" on the back is definitely more of a 2-person job....
A.A.
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Hi all...I will be vacationing at the hospital tomorrow for my blood transfusion...I sure do hope they have those drinks with the little umbrellas!
OMG...there are too may things going on with all of us...I say prayers for all of you!
♥
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Thank you everyone for your support. her medical group didn't have the full pathology report yet so we don't know too much. She's er pos but don't know if she's her2 or anything else. She's having surgery next Tuesday and will have radiation. It's very early. But until we hear more, won't know about chemo. Her dr is ordering the Brca test because of me. I knew exactly how freaked out she was. I kept saying. Research is on our side. You'll be ok. Her dr was very nice. my sister doesn't research or ask questions. She just assumes the dr knows everything.
She's 8 yrs older. I was very different research everything. Asked everyone on this forum. Questions. Had my folder all set. I guess we're all different she just called again. Those first few days are the hardest.
To everyone here. I wish you all the best0 -
AA - stuff on your back is hard to reach - you are right it is a 2-person job, but all my persons are AWOL! Good thing I have some nice friends and neighbors I can press into service, lol! I hope you can get a handle on your issue - if you look at me cross-eyed I get a rash - so I really sympathize. I had a bunch related to treatment - when they did my BMX they irrigated during surgery with Bacitracin and I am allergic to it, gave me Levaquin, allergic to it, yanked my drains and gave me Prednisone and then I didn't heal and lost my expander - arrgghhh!
chickad - hope you have more pep in your step after the transfusion. If you have questions let me know.
shasha - hang in there, this has to be hard for you.
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Thank you for those of you who asked how my son is. He is doing fine, we where just in total shock. The town is slowly getting back to normal now. Over 4 thousand people showed up for the officers funeral. Anyway thanks to you all.
On another note I had my check up everything seems fine my yearly mammo is Oct 7th
for those of you who wrote me about painful & dry sex I thank you. My doctor proscribed me something so we will see
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ang - glad your son is doing well - it is a difficult situation.
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Dana, the only thing that scared the crap out of me in this entire ordeal was the blood transfusion. I was so sure that since I've been on the marrow donor list since 1993 and have never been called that I had some wonky typing going on. So even though I'm good old A+ and I saw the blood was treated for CMV, I was still freaked out. (I worked for years as a clinical pathologist and saw a few, um, gaffes with our blood bank). Plus, to make it worse, I didn't have my appointment until 5:30 that evening, so I could ponder over all sorts of transfusion reactions all day.
It was a breeze. I only got one unit of packed RBCs, so it took about 3 hours. I watched Netflixs on the iPad and had lots of peanut butter filled pretzels. I'll tell you, the next morning when I woke up, I felt so very much more alive. And it got better all day. I sincerely thank whoever donated that unit for making me feel so good. It was exactly what I needed :-)
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ChickaD,
Thinking of you.....0 -
Thanks my friends...sitting in the chemo pod...they took 3 tubes of blood...nurse tells me they have 3 teams that will independently type and cross check my blood...consult with me and Onc before tx begins...they really seem to take this seriously....
Miss Jane...i am a bit freaked out too!
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Sasha , Im so sorry about your sisters bc . May god strengthen you / all of us going through these times
Ashla , please inbox me the info to the place
Chicka , I hope all goes well
Wishing everyone health n happiness0 -
From MD Anderson on exercise for cancer survivors
http://www2.mdanderson.org/cancerwise/2013/09/5-exercise-truths-for-cancer-survivors.html0 -
chickad - blood, and blood products, are considered drugs - and are governed by the FDA just like your chemo drugs. Just like they would check your chemo drugs, or go through several checks at the pharmacy, blood transfusions are handled the same way. Hope all goes smoothly and that like pbrain, you feel better quickly.
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Miss ChickaD: hope all goes well and you feel better. Never had a transfusion, but I guess we all have our problem areas. MO says I have a small area of lymphedema below left "side boob". Not too swollen, but very tender. Only had one sentinal node removed: go figure. Have second rad simulation (ISO) in an hour. And start Arimidex (anastrozole) next week. FYI-if you don't have Rx insurance, Costco has the best price--by $160! Target: $281.99 Costco: $22! Cheaper if you're a member.
Thoughts and prayers to you, Chickie. Have an umbrella drink for me. I like gin!
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Hello all. I am here on behalf of my mother who was diagnosed with IDC in January of this year. Age 41. I have been doing a lot of research about all this. But I wanted some feedback from real women who are going through this. Her tumor was about 2.8 cm. She had a left lumpectomy in Feb, the margins were not all that clear so in March she had a left Mastectomy. Her tumor was er pr positive (like >90%) and Her 2 positive. Out of the lymph nodes they took out, all were negative. (I have a nightmare. i dont know if its possible or not but i have a nightmare that they might have missed a lymph nodes that was affected and things will spread. Like if they took out 7, what if the one next to it was affected? I dont know much about how that works but I guess im trusting the doctors). Because she had the mastectomy, she wouldnt need radiation. The samples were sent for testing, (the lab results would apparently show her recurrence rate based on this test). They waited for the results to decide treament. Then they decided she wouldnt need chemo, only tamoxifen. So now she is only on tamoxifen. Which seems to good to be true for me. Should she ask for herceptin bc shes her2 positive??
They didnt want to do a scan of any sort after the surgery until she had symptoms. All her lab work came back great. But a few weeks later,... she had some rib soreness so they ordered a bone scan.. which came back negative. So that was great.
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Hi Bluevalentine
If your mom is Her2+ she most definitely should be getting Herceptin - not sure why she is not. It is THE targeted therapy for Her2+. I had similar stats as your mother....3.1 cm tumor, clean margins, negative lymph nodes, Grade 3, ER/PR positive and HER2+. I'm older though at 59. I had a lumpectomy, just finished 4 months of chemo and am in my first week of radiation. I was given a good pr0gnosis (and doc told me I would live to a ripe old age!) but was told I needed to treat the cancer with everything available because of the aggressiveness of my tumor (Grade 3, Her2+). They also gave me PET and Bone scans before surgery to verify that it had not spread. Not to scare you, but breast cancer cells can spread via the blood system as well as the lymph system, so clean nodes are good but not a guarantee of no re-occurrence
I would question her docs about her treatment, especially at her young age. Most doctors treat HER2+ very aggressively - but I'm assuming she must of had a low re-occurrence score and that is why they are not? Good luck and feel free to ask any questions.
Annie
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OK, that took all of 10 minutes. Have X-rays tomorrow and begin rads Thursday. Here we go!
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Dana, they do take it very seriously. Type and cross match samples are treated almost like drug tests with chain of custody. And you can be typed and crossed on Tuesday and it "expires" and needs re-done a week later. Special K can tell you all about it :-) I still can't figure out why it freaked me so much knowing all that they do. You are in good hands :-) Let us know how you feel afterwards. It is slightly short of miraculous!
Oh, but one side effect I had was my feet and ankles puffed up for about a week afterwards. I had serious cankles.
Ok, so I may be losing weight a little more easily on the arimidex, but my face is a mess. I use my Clarisonic every night and also African black soap (I love the stuff!). I use retin A. Nothing seems to be stopping these little, red painful zits. Anybody have any suggestions on taming them? I feel like I'm back in junior high...
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I don't have any suggestions, but can commiserate. I begin Arimidex next week. So... teenage acne: done that; mega menopause symptoms: done it; fibromyalgia joint pain: been there, sort of in remission. So NOT happy about the prospect of any of this.
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karenrm -- I have fibromyalgia also. Has Herceptin helped... made it worse, etc. I am about to start by once every three week Herceptin and have been trying to find fibro people to get a feel for "what's next"
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I've never tried to reply to a message from a previous page before but I hope this ends up on the new page...
Ashla,
One question I have in thinking over the breast density issue/Karolinska studies is this: Is it possible that the patients with dense breasts who would respond particularly well to tamoxifen actually would do better on tamoxifen than on an AI? I'm thinking that maybe if it were standard practice to put patients on tamoxifen for 3 months and see which ones had their breast density disappear, and then switch the rest whose breast density didn't disappear after 3 months on tamoxifen to an AI if that is what they would normally get, maybe they would find that those whose breast density disappeared didn't recur.
I liked the link to exercise, which gave some information that is new. At the same time.... once again I think that lumping breast cancer survivors into one group and giving advice about treatment, diet or exercise is a mistake. My experience is that as each one of us experiences chronological aging added to the on-going aging from treatments, it genuinely does have additional effects.
Those who are in the first parts of post-chemo treatment have a different challenge to face. They are often recovering from the long period of repeatedly low blood counts and reduced musculature from repeated periods of not getting much exercise to maintain pre-treatment musculature when they were just feeling too bum. If they are under age 55, they likely still do have somewhat higher testosterone levels to help them gradually work back into better shape.
Those who have passed through that stage continue to lose testosterone and are less and less able to build or even maintain musculature. There seems to be a lack of recognition that the vast majority of breast cancer patients are diagnosed for the first time after the age of 55.
Different strokes for different folks.
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SpecialK,
My husband also had a reaction to Levaquin while in the hospital, which the young assistant to his specialist insisted was protocol for him despite my protests. I'm just glad that enough citizens worked together to get that drug classified with a black box warning on the package insert (which we were not given, even though it was in effect), so that more people might be aware of the problem of tendon damage from it. The problem with it in particular is that so many patients tend to think, well my muscles are just stiff from lack of exercise, so I'll just "work the kinks out", which is absolutely the worst thing they could do on that drug.
As for my rash.... I've never had skin problems in my entire life. One night last winter I made some spicy tomato sauce and had it with eggplant parmesan, and that night the rash broke out and I've had the rash ever since. My PCP said my skin was too dry and to apply lotion. I have never used lotion before because it always leaves my skin feeling greasy and sticky. I tried it and it made no difference with the rash. The derm doc put me on steroid creams because the rash had gotten so bad front and back. Despite that treatment with daily tepid showers, the rash is gradually creeping up my breasts and onto my throat. I wonder if it has something to do with a change in my immune system from chemotherapy and/or rads.
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6cats, I haven't had any problem with Herceptin, but I've been on the low dose so far. Next week I start the higher dose every three weeks, so I guess we'll see then if it affects FM. I much more worried about Arimidex, whose possible side effects include joint pain.
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Shasha10,
My older sister to this day completely refuses to think about or talk about the various considerations involved with bc. It is much too scary and complicated for her. This has made it difficult to find any way to help her evaluate her recommended treatments, since as we all know, recommendations can vary depending on which facililty or specialist one deals with. She is also massively overweight and although she has never had recurrence of her IDC, 2 years ago she was dx'd with IBC. She was fortunate in that she is among the minority of the minority -- (IBC only affects 4% of bc patients to begin with, so they are a minority, and her IBC remains in remission at 3 years from dx with it, which is a minority of a minority). She is on Arimidex, which has made her joints so painful because of her added weight, that she is using a cane and has difficulty getting around. It just is hard to see her struggle with it all.
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Alaska Angel...
Glad you are back. We miss your wisdom here when you are away.
My MO seemed very impressed with the study. His reaction to it was...' well why did it take us so many years to discover this link?' I think you have a great idea but from my limited and almost all very recent knowledge of the medical establishment...change comes very slowly . The only thing that seems to move things along more quickly is if a treatment appears effective and saves money. ....with the money part heavily weighted.
I don't know how long they've considered breast density a risk factor. My recent readings seem to show it to be a pretty powerful risk factor. In fact for me....other than being a woman..it's my only known one.0 -
Thanks Ashla! I am grateful for the exceptional wisdom that you and SpecialK provide, to help so many who are new here and struggling.
The progress with mammograms has been very slow. It took a long time just to have the standard set for women to personally be sent the results within a definite brief period of time. The standard disclaimer about breast density that is on mammograms has been there for at least 15 years now, so they knew it was causing radiologists to miss seeing breast cancers because of it, but it hasn't been until the last decade that they had MRI machines in most places. When I had the mammogram that showed especially dense breasts and that resulted in dx eventually, it was standard practice to provide me with an ultrasound because of the scattered calcifications that they were able to see on the mammogram. There was no MRi machine available then anywhere near where I live. My surgeon continues to want mammos for me to watch for more calcifications. Now that my breasts are not dense the MRI wouldn't be common for me but because I have had rads damage that created rads necrosis in the affected breast, he uses the MRI to help see better.
I actually did ask about the correlation between density and the tamoxifen when I saw that my mammogram had changed so dramatically in just 3 months of being on tamoxifen. The response was that the density was gone because the tamoxifen had resulted in the loss of estrogen that maintains the structural support frame for the breast (which then causes sagging).
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