The Hermit Club
Comments
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Okay here's my update copied/pasted from March board:
I went to my appt and immediately asked the tech about the bump while she was doing my bloodwork. She freaked me out because she said "well, you definitely need to tell them about that." Sigh. So as soon as my MO comes into the room and we get the niceties out of the way I say "I am worried about a lump near my port." And in her calm, cool, sweet way she asks "are you worried that it's cancer?" And I think "no, I'm worried it's an alien, of course I am worried it's cancer!!" But I don't say that.
Anyway, she looked at it and says she doesn't think it is cancer related and maybe there is an issue with the port line/catheter. And says "well, let's get a scan to see" - ARGH! She first suggests a chest xray but then they couldn't get me in that day and it is a long drive so she said they would set up a "port check" closer to my next appt. I have NO idea what is involved with that. So I know nothing more than I did before.
I do doubt that there is a kink or anything in it because it is working fine - both in and out.
As it stands nows, I have my RO consult today, Herceptin again in 3 weeks, but don't see MO again until mid November. Have a MUGA scan in November as well. No mention of other scans yet
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I would talk to the RO about it. They will probably want a scan. Hoping it's just cat scratch fever or a spider bite; ) Sending you good vibes and wishes!
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Oh it isn't on my skin. It's underneath. Just a hard spot.
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Kt, a port check is where you go in to outpatient, and a radiologist injects dye into the port, and views it on a screen. It doesn't take long at all; they'll probably be able to see the bump your concerned about.
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Klt--do what Sissydi sadi--it will put away u'r fears---sorry I can't think of the right words I want to say.
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Update. Just got out of RO office. The verdict is.....rads. I'm not surprised. My age was his main concern. And the fact that the original tumor was grade 3 and suspicious for LVI. He quoted me stat of 20% recurrence risk without down up about 7% with. So it's an easy choice.
Oh he said there aren't any lymph nodes there where I am worried about lol and he agreed with my MO that it's port related so I guess I will just do the check they were talking about. What would be funny is if it has been there all along!0 -
Klt----Ok is ghis a good thing or did u expect more chemo? 31 Rads? I'm sorry I'm confused--what about u age???
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Klt- do you think you'll still have a BMX? Rads were up in the air for me until my final pathology report after the BMX.
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Good Morning--It's supposed to rain today hope storms are not bad and I haven't slept yet so I'm miserable right now--so it'll be a good day to sleep. UGH
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camillegal - ugh on the no sleep - hope you can get some rest today!
I was typing on my phone yesterday so let me clarify, lol! I have 1 node positive, tumor WAS 3 cm and now has shrunk with chemo - usually rads aren't recommended unless you have 4 or more +nodes, tumor greater than 5 cm, tumor close to skin or chest wall, etc...But I am "only" 39 so my recurrence risk goes way up because he feels that with my age and the grade 3 tumor, it is likely an aggressive cancer.
So even though I am still having the BMX (a lumpectomy is an option but it is a mental thing with me at this point - I want them gone), I am going to go ahead and have rads to reduce risk of recurrence - he said something like 20% risk without rads down to 7% with. (and then less than that once Tamoxifen is added in). So surgery first, recovery, then rads.
I had researched a lot on the benefits of rads in the "gray area" of people with 1-3 nodes and there is benefit so I am on board with it.
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Klb--OK now I get more of the picture Now it makes more sense. Oh it sounds like u made a good decision.
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Hi ladies! It's been awhile (like, OMG, a week!) since I've been on here! So much to catch up on!
Things are going well. Had Taxol #10 on Thursday...only 2 more to go! Whaevah - I think I started feeling my worst with Taxol around #6. Just the cumulative effects, where I noticed it was getting harder for me to recover each week. On Taxol #9, I essentially stayed in bed for 2 whole days, just experiencing more fatigue and bone pain. My nails started hurting this past week, which I was expecting but now really annoyed with. But its almost over...and I'm feeling a sense of pride that I've almost made it.
Kltb04 - you and I are now surgery and rad twins. I'll have my BMX in late October (no set date yet), then I'll start 35 rounds of rads in November. My main tumor is/was attached to my chest wall, & I showed positive nodes in my first PET scan when I was first diagnosed, so there was never really a question that this was the route I'd take. I was 39, too, when I was diagnosed (we'll go ahead and ignore that 40th birthday I just celebrated
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But I am so excited to report that I had a second PET scan 2 weeks ago, and the results, to me, were phenomenal! The chemo succesfully shrunk my main tumor in half (from 4cm to 2.2 cm), all my nodes are now clear of cancer, and the other tumors that had popped up in my breast have disappeared! I have suddenly developed a fatty liver (stupid Taxol), but hopefully that will fix itself once all the poisin has left my body. And my biggest sigh of relief is no mets!
Wishing everyone a good weekend!0 -
U sound pretty relieved CS, bt not feeling well yea it's exhausting but u'd do it again. which I hope u never have to. Now whhen u finish with u'r operation and ready for rads--no more chemo???
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Yay CS! That is awesome!
Kltb's post now has me questioning whether I should have pushed for rads. Hmm, my tumor was 4.9 cm and technically spread to lymphnodes and I'm 31. Yikes. But, like CS, the chemo took care of the lymphnodes. Maybe I should have met with a RO? BS and MO both said rads weren't necessary with my BMX. I'm putting a lot of faith in the tamoxifen and herceptin!
I've been the busy lady. Had lunch out with friends today! I also volunteered to help at the school Monday.0 -
We're planning on the rads taking care of any leftover cancer from the surgery, but we'll play it by ear. One day at a time...
My bad days after chemo are Saturday through Tuesday. I'm still on a bit of a steroid high today, so I'm upbeat and positive. Come tomorrow, when I start feeling like hell, my mentality goes to hell with it and I get down and depressed and question how I'll get through the next one.0 -
CS, I hope you have a peaceful and restful weekend.
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CS I hope u feel better with each one--I can only hope---I know it's rough and I don't know how much comfort it is but we're here and today I'll be around alot.
Marat U'R GETTING AROUND ALOT -HMMM should u still be in the hermit club??? U'd better be cuz we're used to u now and I'd miss u here. But I'm glad u'r volunteering, u'll be glad to get out there and do stuff.
Well my diarrhea has started up again this morning, that'y I'll be around more today, unless I need to sleep. It tires me out so. But I did get a goodnites sleep last nite so that's good.
My Grandson is so happy today last nite his Tablet that he ordered came in the store, he's 8 and if he wants something expenseve he has to save for it so he really takes care of his stuf LOL he's 8 ad he's just flippin around this morning and I guess my dgtr has to call for the internet stuff? His squeeky voice is all over the house right now taking pics. I asked him how do u know how to do it and he says Just turn it on and teach u'r self. These kids now are way to smart. I don't have a clue what he's talking about. Brat
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OMG Camillegal - that was hilarious - one of my cats fell in the toilet once - he was running and jumped and didn't realize the lid was up - only got his back half wet though! Your grandson sounds precious! Isn't it crazy what they can teach themselves with technology?? Glad you got some rest last night - sorry about your tummy troubles
markat - don't second guess your decisions - I sometimes wonder if what I am doing is overkill (so to speak!) Wahoo on getting out and about!
CSMommy - glad you are nearly done with the Taxol. So glad to hear about your clean PET! I am dreading getting more scans...I don't know when/if I will. I think they said 3-6 months PFC. The only thing I have lined up so far is another MUGA - since I am on Herceptin - it isn't til November though. I am going to have 25 rounds of rads I believe - going to be a hassle if nothing else but oh well.
I can't believe I have only 3 weeks til surgery - I had so much I planned to get done before then!
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Camille lol! I'm in hermit mode today. Trying to motivate myself to clean this messy house. I live with slobs!
Kltb, I know...I'm closely monitored...still going to MO every 3 weeks. I joked with my nurses last week that I like them, but can't wait to go a couple months without seeing them. I don't think my MO will scan unless a symptom presents. She might order a PET at the end of herceptin. I hope it's before my insurance starts over next May0 -
I don't see mine again til November something - I have seen her every 3 weeks since the get go until this last time. Even though I have to go back for Herceptin I am not supposed to see her? Which I don't like because there is usually something I am worried about that I need to ask her about!
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Hmm, that is odd. Maybe because your BMX? I think I went 4 weeks instead of 3 for my herceptin because the way my surgery date fell. I still went in 3 weeks after surgery, but it was a month between treatments. That was a rough one!
Maybe you should call a double check just to be sure. I know they used my pre-op bloodwork a couple times to avoid insurance problems.0 -
Klt---Only 3 weeks wow--and u really expected to have the house all done while going thru any trestment Hahahaha (sorry) U have a grest attitude.
I worked the months before my surgery and got NOTHING done, good thing my dgtrs went there while I was in the hopital and clean--they were lucky cuz I ended being in for almost a week so when I got home I though OMG and walked in and everything looked fine to me. I was so grateful cuz I;m a slob soooooooooooooooo
Markat I'm laughig when I read u live with slobs hahaha--u have to learn how to live with them--u become one that's exactly what happened to me when everyone moved out--I wasn't always a slob it came radually ad now my dgtrs arent.
reat attitude
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markat - I am still going for Herceptin and labs, I just don't see the MO again til Nov.
I know camillegal; I am the queen of unrealistic expectations.
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Sissydi
I can relate for sure. I am a new diagnosis. I feel like I have my hands full just trying to navigate this, assimilate all of the information regarding my treatments. It takes time for me to process my feelings. So the upshot of this is that I haven't told hardly anyone, so far just doctors, my husband and my son. In reading this thread, I so agree. I don't have the energy to answer questions. My intellect tells me it is not good to isolate, so I still socialize, I just don't tell anyone. I dont know how long this will last, but for right now I need to be this way in order to cope. Any thoughts would be appreciated.
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Waiting - I understand, I did not tell anybody except my family for quite a while, had to accept it myself first....now after 4 months most people know.
Sending Hugs your way.
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Waitingfor: I did not tell many about my BC either. I, like you, needed time to assimilate all that was happening. It is a surreal experience . For now, be comfortable with your hermitude, the time may come when you will want to share but in my experience that should not be rushed. You will know when the time is right. I found that every time I chose to tell someone, it was an emotional experience for me . That surprised me!
I have friends who still do not know and I am comfortable with that. BC is personal.
CSMommy: Yay on the clean scan!!!! What a huge relief, doing a happy dance for you
I too just met with RO. Will start in December, approx 25 with boosts.
Oh. The. Joy.
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I think I've posted before that I regret telling EVERYONE that I had cancer. It was just so shocking... at least to me lol.
I thoroughly expected myself to bounce back quicker than I have. However, I think I enjoy my hermitude and don't really see it as isolating, probably because the 3 slobs I live with ;-)0 -
Waiting - I am just now (more than 6 months after diagnosis) where I am freely talking about it to whoever - I told everyone in stages - mostly by email or FB or had my mom tell (extended family). I also felt like I needed to let teachers/counselors at the schools know and I wanted to control the rumor mill in our small community so I let many people know that I might not have otherwise. For the longest time, I told people NOT to mention it on my FB public wall, etc...but with "Pinktober" coming up, I just this morning took the opportunity to share a "think before you pink" websiteon there and may be talking about it more to make people aware.Bottom line is you have to do what YOU feel comfortable with.
I don't really feel isolated either because I am on here and FB so much talking with other BC folks.
Hope all are having a good weekend...the weather is finally cooling off here so we are going to get out and about later today. This week will be a social test. My mom wants me to go with her to my aunt's house for a "Thirty One" party. A lot of older ladies I don't know...and I don't really want to buy anything - that stuff is expensive!
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Ugh Kltb, be ready for the ambush of questions. I don't like 31 either. I think I bought a makeup bag at the last one I went to. The lunch bags are pretty cheap I think.
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