2017 Diagnosed-- A Place To Share "Whats Next"
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22 hours ago DodgersGirl wrote:
@DodgersGirl: Agreed that making memories is so important right now. My energy level comes and goes, but I'm also now fighting off a cold (I think) which I'm sure was thanks to airplane germs. So I'm going through boxloads of tissues and I came home last night, did a little more decorating at home, then sat on the couch and took a nap...or two...finally going to bed around 10pm. I have no gifts wrapped, barely have them purchased, and am just hoping to get around to cards.
@VL22: Yes Disney was fun..we love it there and this was my 5th trip in 2017. We have annual passes so I made the most of them. Good luck with the cookie making! I'm hoping to get that done at some point also. All this upping of protein is news to me...something I hadn't been told and I try to avoid most meats, will do chicken though and then stick to fruits/veggies and fish.
@Rhyfelwr: Sorry to hear about your issues with the burns. I do not that feeling, but I HAD to have the support on or the pain was much worse for me. I'm definitely doing so much better and hope your time goes quickly also!
@Brneyegrl6608: Sorry that you have tojoin this party but welcome. Wow how scary to have the diagnosis that you had, and it makes me wonder if I should be looking into doing a colonoscopy earlier than 50 (I'm 45 now) since I have a family history (maternal grandmother died from it back in 1990). Keep thinking positively. I also have a different genetic mutation, but mine is the ATM gene, which puts me at higher risk for breast cancer at an early age (yep diagnosed at 45) and also slightly higher pancreatic cancer risk. Scary things for sure.
@TaRenee: Thanks for sharing your tamoxifen experience. I feel like I would like to wait a bit just to give myself a little break. I will see what happens maybe after Christmas.
@LoJo100: Sorry to hear about the rash, here's hoping it's nothing.
@tlfrank: Glad to hear you are done with RADS! Hang in there, you will be feeling better very soon, trust me!
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tlfrank- I used calendula lotion and then a mixture of aquaphor plus Radiagard (has lidocaine in it and made for radiation patients-- RO gave it to me). And where skin itches used OTC hydrocortisone cream. Trick with Tefla pads is shiny side towards the skin
I covered area with the aquaphor/Radiagard mixture, applied Tefla pads where needed and wore a wife beater style man's tshirt to help keep pads in place and protect my skin.
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catlady72-- I was reading reviews for oil of oregano from The Vitamin Shoppe yesterday and saw that many of the reviews dealt with how incredible oil of oregano was at stopping colds. I haven't checked yet to see if ER/PR + BC patients can take oil of oregano or if it acts like estrogen in the body but thought I would mention it to you.
Hope you feel better soon!
I am an annual pass holder, too, at WDW. Love getting away from the world while there. 5 trips... awesome. We got in 3 the year before my dx but canceled 2017 trips due to treatments but am planning my next 2 week stay there.. can't wait!
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Everyone are talking about calendula cream, just want to confirm is this the cream you are using? Currently I’m using Miaderm and Aquaphor, I’m thinking to get one more cream to alternate. Thanks in advance
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Nervous a bit because I am going back to work Jan 2nd. About to walk into team party.
My employer was extremely supportive that I practically did not work the entire 2017.
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Paulette, yes, that's the cream I've been using.
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PauletteK-- I used Calendula Lotion most of the time but am using the Calendula cream curren
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Castigame-- enjoy the team party and may this be the start of your return to normal life once again.
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@Paulette, that’s the cream I use also. I use Aquaphor and cocoa butter too.
@Lego, My port’s been out for about 5 weeks and it is still tender and sometimes it feels like someone is sticking me with tiny needles around the area. I assume that’s the nerves waking back up. My port liked being with me and the surgeon had a really hard time getting it out. There was no redness or swelling but I saw the PA of my breast surgeon a week ago because it felt like the pain was getting worse and I thought there might be a stitch still in there. She said everything I felt was a normal part of the healing process and it would get better. (And chill a bit on the daily free weight training ...lol) And honestly other than the needle pricks it does seem like the pain is lessening. So hang in there, it will get better.
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I didn’t know taking out a port could cause pain! Oh well, I hope that will be the last pain we need to go through for awhile.
Castigate, congratulations you are going back to your normal life. I’m hoping I will be there in few months. It looks like after radiation I will spend my time with lymphedema PT to get rid of the fluid I got from radiation. Just can’t win !
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Thanks Sydsym! Glad to know I'm "normal" in at least one part of this process. Glad your needle pricks seem to be subsiding. I'm not really in pain just discomfort from swelling and a deep looking bruise where the port was. I. Going to try to get my husband to do the the lymphedemic massage to see if that takes the swelling down a bit. Even if it doesn't it will feel good. Lol.
Castigame, I kind of enjoyed my time off work too! I worked from home and that was great but going into the office more now. I missed my coworkers but I was so much more productive at home by myself. We are both fortunate that our employers have been accommodating. It is nice to get back to a "normal" routine though.0 -
Greetings to the 2017 group! I was diagnosed in April at 47 yrs old. A mammogram in Dec'16 did not show anything. A few months later, I felt a lump in my left breast which lead to an ultra sound followed by biopsy and the fun began. In May, an MRI found another area of interest and a suspicious node. Both tested positive. Off to neo adjuvant AC+T dose dense chemo I went. I tolerated that well.
On Nov 20 I had a unilateral mastectomy and sentinel nodes removed. While I responded well to chemo, there was still some residual cancer in the breast but 4 nodes tested negative. All doctors were thrilled with my response to chemo. But it now presents a dilemma on whether or not to have radiation. I'm in decision-making mode right now. Current standard of care would dictate radiation (since I had a positive node originally) but newer studies are being done to see if it is necessary after becoming node negative since my tumors were small.
Timing is everything.... Maybe in 5 years they will have a definitive answer and eliminate it but right now, they can't say for sure until the trials are completed. I can agree to rads, refuse rads or enter the clinical trial and be randomized. I'm struggling.
There is one other little tidbit that I'm waiting on to make my decision. The pathology report from the mastectomy mentioned one of the tumors was HER2 equivocal and being sent for FISH testing. It is the original palpable tumor that started the whole process. When first biopsied it came back as highly ER+/PR+ and HER2 (+1) which is considered negative. The other cancer found by the MRI came back ER+/PR+ and HER2 Negative.
2017 is definitely not the best..year..ever. Not by a long shot.
So happy to read through this thread and see how many of you are finishing up treatment and ready to move on in 2018. Congratulations to all of you for getting through!!
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PauletteK, what I am using is Calendula Ointment. It is in a jar and is green, more like a salve. I am having issues with itching tonight. I think maybe I should wear glovess to bed tonight!😆 Have a goodweekend
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Peachy welcome to our thread! Glad to see you.
Nancy maybe you need to put some cortisone cream.
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PeachyJeanne-- welcome!!
Best of luck deciding whether or not radiation is right for you.
Please let us know how you are doing. And join us in kicking 2017 to the curb
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PeachyJeanne, wishing you the best in making your decision about rads. I felt I should do it, because I said no to chemo. While 2017 has not been the best year for my husband and I (he suffered sudden and permanent hearing liss in one ear literally overnight on Jan 1), I can honestly say this has been a good experience for me because it was the wake-up call I needed to make me proactive about my health. I won't forget the possibility of recurrence, but I want to go into 2018 with a positive attitude and deal with things as they happen without worrying about it constantly. It won't always be easy but I feel very much at peace now
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Hi Dodgers girl....I've been looking for a place to share what's happening and to ask for advice and support. I was diagnosed with breast cancer in early November this year. I'm going into surgery tomorrow for a lumpectomy and a sentinel lymph node (or two) removed. I underwent the injection of the dye process today. I had myself so worked up with worry that I'm sure I caused myself more pain than perhaps it should have been. When the pathology report comes back, I'll be able to share exactly what I'm dealing with. In the meantime, I would sure appreciate any and all advice. I'm told I will have to undergo radiation in 4 - 6 weeks after this surgery.
Thanks everyone..
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JeezLouise-- glad you found us. I am sure the ladies here will have great words of wisdom for you.
One thing I think we all learn is to take the journey one step at a time. Surgery tomorrow, then move to recovery. Pathology will help define a plan. If you need radiation, worry about that closer to rads. For now, surgery and recovery are the focus points. Personally, surgery was the easiest of the treatment steps. I hope your surgery goes well and that recovery is as pain free as possible.
Please let us know how you are doing, ask questions, and know that you can do this... and we will be here with you.
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Hi Peachy! Your story is interesting to me. I had a similar situation (except I'm her2-) with a node that was positive before chemo but negative after. My case was brought up at the tumor board as my BS did not think I needed radiation but the RO thought I should still do radiation. I ultimately ended up doing the radiation on that side. I THINK the ultimate deciding factor was my margin which was 1.5 mm instead of the 2mm they wanted. I was actually enrolled in a trial that would have randomized the radiation if my node had tested positive at surgery. I believe we will learn a lot about the need for radiation, and its role in survival for those with 1-3 positive nodes Asthese types of trials complete.
I'm glad you responded well to chemo. Good luck with your continued treatments.
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I never thought I am a needy person until this bleeping crap.
I worked all year to take care of myself (235 medical claims and $245,000.00 actual payment by ins company) I even needed an in person drivers license renewal which included passing by my old mammogram place which failed me 10 plus mammos. It seems I am not done. Need a second opinion re multiple colon polyps. I also got the last maintenance car check 3 months early to minimize any absence from work.
Told my mgrs that I will be reporting Jan2nd. The consul is on Jan 9th.
I am sick and tired of drs appointments.
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Lego - sorry to hear about the port issues. Honestly, nothing during this entire process has gone as I expected - one bad surprise after another, and I know this experience is shared by many! I am hoping that my port removal goes as smoothly as I am being promised!
For those of you doing rads, is bloodwork involved? I’m hoping the answer is no
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I did not have to have bloodwork done for rads.
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VL22-- no bloodwork for rads. Weekly RO appointment after a rads treatment where I was weighed and blood pressure taken
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Castigame- when did you have your colonoscopy??
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VL22, I did have blood work but have learned most do not. Because I was having periods before chemo started (but not since) they wanted to test to make sure I was not pregnant - even though I assured them I was not! They also do a standard blood test to check the thyroid before treatment starts. I still had my port and that was the last blood draw I had.
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JeezLouise - sorry that you have to join us, however all the ladies here are warm and knowledgeable, many of them we went through some bad time together. We are truly pink sisterhood.
No blood work for me, however I found out after radiation my blood pressure went sky high. I always got problem in dr office for BP but never seen that high before.
Mimi - I need to be in person driver license renewal also, I didn’t do it during chemo all he’d time, I need a driver luckily my hubby took me to anywhere. He doesn’t trust my driving during chemo anyway. Will renew my license after radiation. Praying for your second opinion.
I’m going for my 7/30 radiation today, so happy it’s friday so I have two days rest.
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PauletteK - my blood pressure skyrocketed at rads too - around 170/110. The RO threatened to medicate me it was so high. I started to monitor it during the day at work and it was much much lower.
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Mimi..sorry to hear about the added stress. If it brings any peace, I understand snipping polyps is pretty effective in literally nipping colon cancer in the bud. Those that do not have the test and needed snips tend to let the disease develop. I hope just the snips are all you need.
Legomaster, we are very similar! I've had 2 conversations this morning. First was with RO and he said HER2 status would not change radiation options and prognosis is still very good either way. He even said if it does end up being HER2+ I could do the additional chemo and radiation simultaneously. He said HER2+ in the past was considered a bit more aggressive, but now with drugs available to treat , not so much.
My MO's office called after that conversation with a slightly different recommendation. For some reason the FISH test is being re-run and I'm told results should be in early next week. She said if the HER2 status does change and come back as +, she would want to do additional short term treatment prior to radiation. If HER2- is confirmed, proceed right to rads. Sounds like she recommends rads either way but I'll confirm that early next week.
So...I'm going to take this weekend to try to NOT think about this and wait until I at least get those results before asking each dr why they differ on the timing of treatments (Herceptin first vs. Herceptin/rads concurrently).
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Colonoscopy was 09/27. Did not hear for almost 3 wks plus. When they called it was right before hyst. So made an appt for a follow up right before thanksgiving. At the follow up, Was told to take 3 meds for 2 wks which made me sick. Stool test for a bad bacteria I had was done. Waiting for the result. Because I have Cowden's Syndrome, polyposis is something cannot be overlooked. I probably go w every six month colonoscopy route and do hail marys every day. In the meantime, I have been eating all dark green veggies. I hope some miracle happens which scrapes away those bugger polyps.
Guess I still can count my blessing that I am going back to old job w 4 wks vacation.
Thank you for listening again.
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Brneyegrl: So sorry to hear about the additional cancer -- however, SO relieved for you that you found it early.
PeachyJeanne and JeezLouise: Welcome -- though sorry you're here. This is the most supportive group. I literally could not have made it through the past year without the support, advice and understanding I've found here.
Hoping we all have a better/wonderful 2018!!!
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