2017 Diagnosed-- A Place To Share "Whats Next"
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OK Ladies,
I have flown into Crazy Town with a couple of 👮 Cars, the Paddy 🚙 wagon and The EMTs with Hypodermic syringes pulled out to knock me out.
Back in March I had a month of scans- Bilateral Mammograms (my 6 mo scans post Rads), A brain CT and carotid artery U/S ordered by my GP because I've been walking around Dizzy like a Drunken Sailor. (I thought/think it is a SE of Tamoxifen) Had labs to check my tumor markers for my Thyroid Cancer, an U/S of my ovaries by my Gyno due to pain near my left Ovary, etc. etc.The tech at the Breast Center called me back down the hall after my Mammograms and told me I could leave, that everything looked good. The CT showed the same damage as previous due to a stroke as a child, nothing new. The U/S of my Ovaries showed one small cyst that will be monitored. But, I received a letter from the Breast Center two weeks later that stated they saw something that wasn't there in my previous Mammograms that they would look at again in six months that was (probably) B9. No other explanation was shared. Not even which breast was the area of concern. I waited through the rest of March, April & half of May for my appt with the Nurse Practitioner in my Breast Surgeons office. The Breast surgeon was the one who had ordered the Mammograms. I told the PA that I had been worried since the letter was received in March and couldn't understand why no one shared the actual report from the radiologist and I couldn't understand why. She told me I had a Birads 3 score and would probably always have a Birads 3 score in the future. I was stunned at her response. She made no offer to show me the actual report or even tell me which breast was involved. Much less tell me what they "saw that was different" from my post Rads Mammogram. I was so shocked at her attitude that I simply left.
I have another Mammogram scheduled for Sept.. Anyone have that kind of response. Am I crazy for thinking that at the very least she should have given me a copy of the report? I thought each finding on a radiological report was given its own score. Why would she state I would probably always have a Birads 3 score? Am I off the wall or is this unusual?
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Dodgersgirl - yes yes yes! I started chemo at the end of last summer, but I was just saying yesterday that I feel like I’m 90 years old the way I’m complaining about the heat - and it’s not even really hot yet! When I’m out in the sun it feels like on extended never ending hot flash.
I’ve been blaming Tamoxifen, but our bodies have been through so much, who knows.
I get so embarrassed when I get hot flashes - always at the worst times - in line at the store, getting my hair trimmed etc.
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VL22– welcome to a “new” summer!! I don’t think I am sweating under the arm that I had surgery on. So wondering if my body is trying to cool down another way?? I go outside to work in the yard and sweat starts along my hair line. NEVER had that before and hair used to be down to almost my waist. Really weird
Thanks for replying!!
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Does anyone else get itchy from being in the sunlight? I never had this reaction in my previous life (bc).
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Hershey - I do get itchy but I really think it is my seasonal allergies. They are very bad this year and do make me itch.
Are you on tamoxifen or anything like that? I’ve read that they can cause itching, but usually with a rash. Also makes some people sensitive to the sun, which I’m sure could cause itching
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VL, I take Aromasin but haven't noticed a rash. We've been in the garden alot, so I may be reacting to the pollen. I'll try Benadryl and see if that makes a difference.
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Oh my goodness yes with the heat. We had field day yesterday and it was unbearable. I had to sit down at one point. This something we do every year and in the heat and while it is always hot yesterday wiped me out. I found out today my radiated side tissue expander has leaked and is now flattened. My exchange surgery has moved up from July 11 to June 7. Also have to cancel my vacation ...2 years in a row now. We are going to try and reschedule for July.0
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Annbee—. Oh my. Sorry you had to cancel a 2nd vacation and hoping you can reschedule. Surgery just around the corner now. Wishing you the best with that. Is that an overnight stay or out patient surgery? Seems to be surgery should always be with a hospital stay but seems to be less and less likely now-a-days. Total knee replacements are done out patient ... hard to imagine.
School out yet?
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I love the heat especially after the winter we had. Haven't noticed the heat but do feel cold most of the time unless it's 28 C (82 F) or above. The only other thing I noticed was during chemo I had watery eyes and runny nose so bad it looked like I was crying all the time and had a constant cold. Well, the watery eyes are back. Not as bad. I guess it's allergies??? I use to get hot flashes all the time but now only the odd one.
Chemo definitely does weird things to our bodies. I still don't have any armpit hair back and very minimal leg hair. But oh, my mustache, chin hairs and side burns are growing like weeds.
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pink_is_my_colour— hair!! Oh my gosh, yes. No hair under arms... but for a while I felt like a monkey or something as hair grew in all over my face... white, fuzzy fur like hair all over the side of my face. I asked for a flawless shaver for Christmas and used it nearly every day until finally those weird hairs stopped growing (thankfully)
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Hi Everyone,
I have been reading through all of the posts and am so sorry so many of us are going through challenging times lately. You are all in my thoughts sending you all positive energy and warm hugs!
I had a mini scare that turned out to be nothing. I got a call about my mammogram results this past week saying I need to come back for more tests because they found something. (Freak Out Time!) I went back on Thursday and after the mammogram and ultrasound they said I had a cyst. I was so happy I went out and bought myself a bag of chocolate chip cookies to celebrate that it wasn't a tumor.
Now I need to call my BS next week and see if I can get my cyst drained.
Sending good thoughts to all and lots of Love and Hugs,
Sara
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I found a lump, freaked out, had a mamm, they said it was a cyst. I have had it a long time. I have NEVER been able to feel it, but for some reason it came bouncing up to the surface to freak me out. In the office my regular doc said he'd just drain it and I'm like, umm, no, I'll take a pass on that. He was a little surprised. But seriously, I do not do needles well and I need to work myself up to having a needle jabbed in my boob and since he sort of sprung it on me it was a big, fat, I DON'T THINK SO, BUSTER! It does not bother me and when I do notice it, I know what it is. Just saying that unless it's causing you grief, draining it might not actually be necessary.
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Last day of school is Friday. I have never been more excited. I started my third AI yesterday. Hoping this one works. It has been so nice having a ‘medicine vacation.’ I have felt totally back to myself minus the Achilles tendinitis and that is getting better. This probably what got me in trouble with the leaking tissue expander. Cleaning my classroom and moving things around. I could have bumped it and never felt it. The exchange surgery is out patient. I am over the needles as well. Less needles the better. I think that is my anxiety over the surgery too.0
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Dodgergirl how is the trial coming along? How are you feeling?
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Annbee— the trial is going well. I still don’t know if I am taking 10 mg of Afinitor each day or 10 mg of a placebo. My daughter is sure I am on the chemo pill as I am more forgetful, or so I have been told. I have had 3 mouth sores so thought I was on the chemo but my first blood work, 6 weeks in, didn’t show much lower white or red blood cell counts.
Very tolerable so far. I do have to use a prescription mouth wash a few times a day and then nothing to eat or drink for a hour after using the mouthwash which is a bit inconvenient but not a reason to give up on the trial.
School is almost out for you. How exciting!!
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sm627– sending positive thoughts and hugs for the draining of the cyst. Hope the procedure is quick and painless
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Dazzlingeagle—. Thinking of you. Hope you have a plan in place and that all goes well.
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Annebee are you out already? We have testing this week (bleh) and then one more week for the kiddos. They are wound up now. I think testing days should be half days and the only kids who need to come next week are those who didn’t “pass” the tests. But... my classes still have work to do so I’m thankful for the time in class. (Go ahead, call me crazy)
I am dying to work in my classroom and costume shop. I need to organize and update what I know that I have. After the kids get out I’ll be working my tail off. Gonna have the maintenance guys move some things for me. I know I “could” do it, but I also know I should not do it myself.
Good luck with your exchange surgery
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Hello everyone. DodgersGirl, I got the results of the scans today and they are clear. I went over to the local clinic so I could have copies of the reports, and itdoesn't seem as if there is anything to worry about. With reference to the bones (I have osteoarthritis throughout my body), one page of the report said that there was no appreciable change in the points where there are sclerotic spots, and another page said there was NO change. So the oncologist is ordering another bone scan (my last one was six months ago and it sounds like she does this on a regular basis), so I am hoping it won't be too long a wait, and then we have to go to Winnipeg to see her after that is done. So, to some extent, my mind is at ease, but I am finding that it is true what others on these forums have stated, and that is that we will ALWAYS be aware that recurrence could come at any time. One product that I have been using for about 15 months is Young Living Sulfurzyme, which is for joint pain, and I can say I have so much less pain than before I started it. This week has been my best in over a year - two full days of yard work, planting flowers, canning, etc. Went for a two mile walk today and hope to get another mile in before bedtime. So - I feel and hope I will continue to do well.
I think of those of you with ongoing treatments and issues and just want you to know I don't forget you and keep you in my thoughts and prayers. Hugs to all of you.
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My first mammogram after all this started came back with nothing. Yeah! Everyone is asking is I'm relieved. Well, yes and no. They don't seem to understand that it's always in the back of my mind that this could come back and not necessarily in the breast. As much as I don't like the idea of it coming back I think it's better knowing because I don't take life for granted the way I use to. Now, every day is precious.
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pink_is_my_colour, I totally agree with you. Right now, I am willing to take every test and scan the oncologist offers, because if I don't and the cancer recurs, I would have to start all over at the local level and work my way up to treatment; last year from mammogram to treatment took months. I am so glad your mammo was clear and hope that everything will go well.
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yeah on the good scans. It is always on the back of our minds.
TaRenee: I like the idea of half day testing. I took a half day to get all my pre op stuff done. It was nice getting out early. Tomorrow is the last day and luncheon on monday. End of the year is not favorite. I would have help with the heavy stuff. I over did it, but all ok.
Dodgersgirl it sound like you may have the chemo and I am glad it is tolerable. I still wish there was something I could do. I am still struggling with the AI. Oh well.
My exchange surgery is set for June 7th. Nervous and ready.0 -
53NANCY- woot woot!! So happy to read your great news!!!!
Pink_is_my_colour—. Woot woot to you, too for a clear mammo!!!!
Every day is a gift. I think we appreciate that more now than before diagnosis
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Hello everyone and it's great to hear all the good news - mixed of course with the realism of our "new normal." My only issue currently is that I've developed tinnitus, which was doubtless coming anyway given my moderate hearing loss but also probably hastened by Tamoxifen. I get a follow-up MRI in a couple of weeks and see my MO, but at least my six-month mammo was clear - whoo hoo. Meanwhile good weather, good friends, interesting work and a precious husband and dog who love me. Holding onto all that and wishing you all the best!
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I was doing really good despite the reccurence and now I'm probably the lowest I've ever been in my life. So what's going on is swelling in subclavicle area, which is a local recurrence of breast cancer and my MO already started me back on herceptin and perjeta and once biopsy results are back maybe more chemo. (My mammogram and Cat scans were clear by the way.) Went to the MO, he said go to the surgeon. Went to the surgeon, who said it was inoperable, go back to the MO. Went to the MO who said get a 2nd surgical opinion, go to Rad. Onc.
Went to Rad Onc. who said no surgeon is going to do surgery on me. So decided to have radiation on the clavicle area. Then I ask rad onc. if he has biopsy report and he says yes, he has the prelim report which says small cell carcinoma. Which the rad onc. said it was terminal cancer, no surgery would even be done for me because it's already spread everywhere and the radiation would not be curative, it would be palliative. WHAT???
I just really really hate this doctor. This was the first I had heard of any of that and the way he delivered the news was awful. He told me I can't be wishy washy, I either start rads or delay them further while seeking a second surgical opinion and let the cancer keep spreading.
I went and got set up for rads today, the little tattoos, and then rads are to start next week. Am still really confused. Have been having really bad few days here. I know I need treatment but at this point I just hate the rad doctor and the radiology place so much I am thinking of just cancelling and sticking with whatever chemo the Medical Oncologist might give me.
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dazzlingeagle-
Nothing like getting the run around! So sorry this is becoming so difficult, your RO sounds like a jerk, no people skills. I didn’t like my RO either out of all my docs.
I don’t know where you are located, but i think I would want to head to a major cancer center at this point. Even if it is just for a second opinion. The delay is the problem there, right? What if they could get you in within a week or so? It might be worth checking.
Is there another radiology place nearby? Cancer is hard enough without having to deal with docs with shitty attitudes.
((Virtual hug)), or glass of wine, or shot of whisky...
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Oh my goodness, that is horrid! First I hate the bad news for you, but then I am also furious at the RO on your behalf. Doctors can be such jerks!
Personally tho I would start the radiation while seeking a second opinion too. I believe both MD Anderson and the New Orleans Center for Restorative Breast Surgery do consults via phone and skype, if you have the energy for that. A good friend of mine recently had a recurrence, then a bad interaction with her local surgeon, and ended up getting great care in New Orleans. Her insurance paid for everything but the plane fare.
But really, I just want to say I'm sending love and warm thoughts your way. Let us know how we can help.
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thanks for the replies. They help a lot. I am worried about the timeline too. I'm afraid the tumor is going to infiltrate the braxius plexus area and affect the nerves in my arm. But that could also happen as a side effect of the rads so there's no good choices. There are a couple other places but just the thought of starting over at them is too much. That's why I forced myself to go back today for the rads prep. Just get it over with and never ever go there again. In a way it's kind of freeing, all the hate. I don't feel it necessary to act pleasant and smile. I cried and just let them do their prep.
I have Herceptin/perjeta #2 of this new cycle next week, then the week after that I think the rest of the biopsy results should be in and I have an appointment with the MO to see if there is any more information. I just want to know now if I will be on chemo again.
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Dazzling: Sorry you're having to go through all this. Some doctors don't realize the impact their words have on us.
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DazzlingEagle- sorry you're going through this. One thing I just can't get over the fact that your RO is making treatment decisions based on a preliminary path report?
I mean, don't they have to wait for full and final report? Also, can you get copies of the pathology reports? I'd want to see them all and get a firm diagnosis first as they seem to be saying this isn't a locoregional breast cancer but a totally different cancer?? I mean, that's a totally different thing.
It seems like your team is not working well as a team
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