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Topic: Frustrated with all the scans and appnts...Venting

Forum: Mixed Type Breast Cancer — Meet others who have mixed type breast cancer.

Posted on: Feb 14, 2012 01:53PM

Raili wrote:

I'm feeling irritable and just wanted to vent...

I was diagnosed with two kinds of breast cancer in late 2009 (mucinous stage 1, and DCIS), and went through surgery, rads, and am now on Tamoxifen...then 2 years later, I was diagnosed with early-stage melanoma, which was cured by surgery.  I'm now in good health, but I'm feeling irritable because of all of the scans and tests and medical appointments I'm going to need for the rest of my life.  I'm now 33.  This time of year, in particular, feels like too big of a trip back into Cancer Land... I had to have a check-up with my oncologist last month, and yesterday morning I had a transvaginal ultrasound to assess the heavy bleeding I'm experiencing from the Tamoxifen, and yesterday evening I had my annual breast MRI.  In a couple weeks I need to have a check-up with my breast surgeon, and a few weeks after that, I go for my 6-month skin/mole check.  It's time-consuming, anxiety-producing, and sometimes painful. 

During the MRI last night, the thing that they press against the sides of your breasts to hold them still was digging into my ribs on both sides for the whole 30 minutes...and now, 19 hours later, my ribs are still quite sore.  I'm supposed to be doing a writing project that is due tomorrow, but I really just want to go soak in an Epsom salt bath and let my body rest. :(  I don't want to seem like a complainer, or make people feel sorry for me, so I haven't let on that I'm having a hard time.  But I am.  When I was first diagnosed and going through surgery and radiation, my friends, family, and employers were all incredibly supportive, attentive, and understanding.  But now that I'm a couple years out, everyone assumes I'm all better and beyond it all.  MOSTLY I am... I'm very grateful to have only had early-stage cancer, and to be alive, and to be so healthy now, relatively speaking.  But I'm going to be a cancer survivor for the rest of my life, and I'm feeling bitter about all that that entails.  My aching ribcage is driving the point home.  Scheduling the MRI required two phone calls, one of them nearly 35 minutes long, and then the MRI itself - including travel time to and from the cancer center - took over 3 hours.  The ultrasound appointment, including driving time, took 2 and a half hours.  So that's 5.5 hours yesterday in Cancer Land... and now I'm behind schedule with my work...

So frustrating that pre-dignosis, I hardly ever had to go to medical appointments for ANYTHING.  I was so healthy.  But now that I'm a cancer survivor, it kind of snowballs.  Tamoxifen increases my bleeding, so I have to have another gyn appointment, and then my oncologist wants me to have a transvaginal ultrasound, in the meantime, she does bloodwork on me and discovers that I have anemia, and so I make an appointment with my PCP, and then, surprise, I start having Repetitive Stress Injury symptoms from too much typing at work (and possibly from chest/shoulder tightness from surgery and rads), so now I have a referral to the orthopedist... GRRR.  It seems like it just never ends.  And I'm 33 and HEALTHY.

Okay, thanks for letting me vent.  I gotta get back to work....

Dx 11/2009, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Feb 15, 2012 12:21AM jgbartlett wrote:

It's ok to vent, that is exactly what this site of for - and we all know how you feel.

<<<< hugs >>>>


Julie Dx 5/16/2011, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Dx 9/16/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 3, 0/2 nodes, ER+/PR-, HER2- (IHC)
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Feb 15, 2012 01:53PM Raili wrote:

Thanks, Bon and Julie.  A heating pad is a good idea... I'll try that!

Dx 11/2009, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Feb 15, 2012 01:59PM Jaimieh wrote:

Your not a complainer I started my cancer journey at 32 and I have spent WAY too much time doing all of the above.  It's frustrating.  I hope you get a break.

Dx 12/24/2008, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ Dx 3/25/2014, IDC, Stage I, Grade 3, ER-/PR-, HER2+
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Feb 19, 2012 09:28AM dogeyed wrote:

Dear RAILI, I remember back before I got cancer, I wound up fracturing my back in three places in a car wreck, big ordeal, wound up disabled, and there were ENDLESS visits to docs, etc., just like you're talking about.  What I FINALLY had to do, to get some peace and quiet once in a dang while, was slowly but surely get all my appoints six months apart, all in the same month each time.  I chose March and Sept becuz March was just before spring, so I could be "free" for my fav months of spring and summer, and then six months later was Sept.  And now that I've done all my cancer stuff, I've stuck my routine cancer clinic checkup right in March, goes with my other forever stuff now.  This takes a little while, but it can be done.  That way you only have to go thru the minefield once or twice a year.

As for going thru that pain with the MRI, gosh, I'm willing to let one goof-up go, but I'm all for jumping into somebody sheet when I have to pass by again.  Hopefully you won't need to do another anytime soon, but when it comes up, you knows what to do, make a majorly big deal out of what happened before, and hopefully they will either put some foam there or loosen the dang thing up, for crying out loud.

I have heard of these velcro wrist splint thinga-majigs that supposedly help prevent injury for people who spend lots of time on computer, and I also vaguely recall a woman who I used to work with years ago who had a little wrist pad thing that sat I across the front of her keyboard, not sure.  I'm sorry, I don't mean to boss you around at all, I just hate it SO MUCH that all this full-on ridiculosity is coming down the road at you!!! 

Now, as for the rest of your life having to do all these things, really and truly, if you can hit the five-year mark without recurrence or spread (with two years being excellent), then once a year, perhaps twice, will likely become your norm.  Also, once you finish your Tamox routine, you shouldn't have hardly any extra that will pop up and bother you.  Hope my ramblings help you, and if all else fails, ask your cancer doc or regular doc for some temp tranqs to pull you thru this rough patch.  GG

IBC, IDC, Melanoma/ 5 mos ACT chemo, mastectomy, rads to 11/2011, Arimidex 1 mo, NED 9/2012, two+yr survivor 5/2013 Dx 2/14/2011, IDC, 5cm, Grade 3, 2/11 nodes, ER+
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Feb 19, 2012 09:45AM odie16 wrote:

Raili - I too feel the exact same way. I can't even remember when I saw a doctor prior to dx and am thoroughly overwhelmed with all the follow-ups, poking, prodding, watching for this or that, etc........Hang in there! It has to level off at some point, right? 

Dx 6/27/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Feb 19, 2012 09:53AM Ysa wrote:

Just feeling your pain, Raili.  Sending hugs.

Courage doesn't always roar. Sometimes, courage is the quiet voice at the end of the day saying "I will try again tomorrow". (Mary Anne Radmacher); one 9 mm and one 7mm mass in right breast, bone mets/lumbar spine, Xgeva started 12/2012 Dx 1/6/2012, IDC, <1cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 5/1/2012 Femara (letrozole) Dx 11/2012, IDC, Stage IV, mets, ER+/PR+, HER2- Radiation Therapy 2/19/2013 Bone Radiation Therapy Bone
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Feb 19, 2012 10:07AM voraciousreader wrote:

Oh Raili...It does feel like a runaway train that you can't get off of!!  I had a basal cell years ago and have annual dermatology visits...Then the bc....In between I had gyno issues and now I have even MORE gyno issues while on the Tamoxifen... Also had major lung surgery years ago and if I get a cough or my back hurts....Yikes!  The doctors start circling like it's a 5 alarm blaze ON A RUNAWAY TRAIN....Oy!  I've adjusted to my new normal and appreciate a week, ANY week, when I don't have a doctor or test appointment.  Hmmm...on tap this week?  Six month oncologist appointment and Lupron shot AND a 6 month gyno appointment with transvaginal ultrasound follow up to D&C from six month ago.....

Come on down to the Bonfires of the Goddesses thread and throw some of those appointments vicariously into the fire...I promise you'll feel better afterwards...even if you STILL have to keep the appointments!

Hugs to you!  And thanks for letting me do a little ranting too!Innocent

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Feb 19, 2012 12:30PM Raili wrote:

dogeyed, thanks so much.  You're not "bossing me around" at all... I appreciate your kind words and suggestions!!!  I will definitely try to get my check-up appointments clustered and 6 months apart.  That was going well until my oncologist left the practice and I got transferred to a new one, who wants to see me every 4 months while she "gets to know me."  Argh.  I'm contemplating going back to my old oncologist, even if it means driving an hour to her new location! 

Great idea, re: foam padding for the MRI thing.  I will ask next time!  And yes, I'm trying various wrist supports for the RSI.  I'll also try and get back to yoga classes, which might help with ALL of my issues.

Thank you, odie...sorry you're experiencing the same thing!  And thank you, Ysa!

Voraciousreader, I love how you phrased it - "doctors start circling like it's a 5 alarm blaze on a runaway train"...that sounds like a poem!!  And it's so true.  The results of last week's transvag U/S show that I need an endometrial biopsy, UGH.  I will flat out refuse unless I can have it done with conscious sedation.  

Hugs to you, too!

Dx 11/2009, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-

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