Apparently I Am "Just Diagnosed." :(

LW422

Astrid!! " /> Hello there; I was wondering where you have been lately. Hope all is well with you, and as always, thanks for your unflagging positivity.

Thanks for the wig compliments; I've bought two styles and wonder if they'll ever get worn. I also bought some bangs on a headband (do you call them "fringe?") For some reason scarves and hats look a little better with a bit of hair showing.

I had Taxol #8 today and so far, so good. I was tired and sleepy when I got home so took a 2-hour nap. Naps are good! For the most part my dark days are few and far between, but if a scan is scheduled I go off the deep end with "what ifs". Thanks again for your words of support; they really comfort me.

Take care and keep in touch!

Krose53

My hair was always my best feature. Long and thick but losing it actually wasn't as bad as I thought it would be. I too, find everything on my head annoying. Hats give me a headache and wigs are just awful and itchy. I bought a wig before I lost all my hair and I never wore it, not even once. The day after I shaved my head, I went out to lunch and shopping completely commando. I decided I was uncomfortable enough with chemo and everything else going on and I wasn't going to add the annoyance of a wig to it. The only time I wore a hat, was a knitted beanie when it was cold out. It was actually kind of freeing. I didn't care if people stared at me. Most of the time I forgot I was bald and didn't even noticed people looking at me. Hang in there. It all gets much better. I'm 3 years out next month and my hair is long and looks better than ever. You'll be in my thoughts.

LW422

Krose53--what a nice post; thanks. I know it's silly... I hardly ever even leave my house since I no longer work. I just can't stand to see myself in the mirror or in the Ring doorbell videos when I walk outside. Pathetic, really. With all the other crap to deal with, losing hair has to sink me emotionally.

I hope you are doing well; three years out is a great milestone! I wish you many, many more years.

LW422

I forgot to add that at this week's chemo, I heard "the bell" rung TWICE. I was too far away to see the ringers but there was a lot of clapping and whooping for both of them.

LW422

Just an update to my progress. This week was my last Taxol and I had an ultrasound of my cancerous breast to see how I'm responding to chemo. I got good news; the SO claimed I have had "excellent" response with decreased tumor and lymph node size. Redness from IBC is almost totally gone.

I met with the breast surgeon to discuss upcoming mastectomy and my options for having a plastic surgeon make the closure to get the "aesthetic flat closure" I want since I'm not interested in reconstruction. I found that the plastic surgeon is also able to perform the LYMPHA procedure that will connect lymph channels to blood vessels after the lymph nodes are removed. I hope that this will help prevent lymphedema in the future. I won't be having surgery until August, so I'll be meeting with the plastic surgeon to discuss these options in the near future.

Next week I begin the AC chemo, which I'm dreading but hopefully it won't be as bad as I imagine. So onward we go! Hard to believe this started 4 months ago; it seems like a lifetime.

Beesy_The_Other_One

Congrats on finishing Taxol, LW, and it's great to hear of your great response thus far! It's particularly exciting that the PS can do the LYMPHA procedure! Just yesterday I had a tooth extracted (related to chemo--long story, but the quack endodontist left part of a tool in my root and while I was not on chemo, the root canal seemed to be effective but as soon as my immune system was depressed, infection started). That tooth has had two root canals now and it's just been a money pit, so I'll be getting an implant. The periodontist who did the extraction told me he couldn't place the IV and BP cuff on the same arm. I told him the left arm was not going to be used--he could use my leg for BP and right arm for IV. He argued with me, dismissing my concern about lymphedema completely, almost like a schoolyard bully. I was literally prepared to get up and walk out, but he acquiesced, begrudgingly. He honestly did a fantastic job--it's healing beautifully, but I'm not going back to a bully. I've already found another periodontist. Hopefully you won't have to deal with this because of the LYMPHA procedure!

LW422

Beesy--I'm glad you got the dental work complete, but what an ass that periodontist is. I'm glad you're finding a new one that hopefully will listen to you.

I'm happy that there is a LYMPHA specialist at MDA, but one concern I have is that I will have radiation after the surgery. I'm wondering what the effect of rads will be on the LYMPHA connections so I will have plenty of questions for the plastic surgeon. Ugh, always something to worry about but I am so hopeful that I don't ever have to deal with lymphedema.

Hey Jana. How are you these days? Yep, I'm dreading AC but whatever it takes! This is 2021, The Year of Dread. I hope things are going well for you.

Helen67

Hi Astrid,

Thank you for this wonderful reply.

I was not able to see any replies until today, hence why i did not post any.

I had a very good lumpectomy experience at an amazing hospital and for the first couple of months was in a lovely place of peace.

The past month of radiation treatment has been a bit harder and i do not have the same connection with my radiation doctor.

I was pleased to make the decision to leave my position at a community health center and use the month of low radiation treatment to build my private practice. Which i have been able to do.

I have had some wonderful friends around and have taken part in a beautiful angel healing which was delightful.

It's interesting how our mood can shift as we traverse this journey and I have to ensure that i come back to that place of faith.

I have found some time to do some fun stuff.

And need to do more of that.

Thank you again, your post means a lot.

Helen.

Helen67

Hi Rose,

Sending a great big hug.

There may be some things you might be able to do that will be pleasing to your eye.

It really can be overwhelming and shocking can't it?!

I do think it is important that we have a therapist or nurse specialist we can speak about this stuff with to help us get through the shock and grief that are very normal. Sending you such a big collossal hug again. Trusting things will get better. Helen xxxx

LW422

Hello again, Helen. I'm glad to hear that your treatment is going well. Take care and keep us informed!

LW422

Hello everyone. Since Helen bumped the thread I thought I'd post a little update. I've had one AC and it really kicked my butt for about a week. After that I feel mostly "OK", but I get tired easily. My second AC will be on Tuesday so I'm hoping it will go OK... at least I know what to expect this time. I'm hoping my blood work will be OK and that I won't have to have Neulasta... but so far my luck hasn't been that great this year.

I hope all of you are doing well, whether in active treatment or not. I will always appreciate the encouragement I received from all of you.

Anonymous

Hiay Helen

Lovely to hear from you and so glad you are doing ok if not great with rads. Connection is so important. I get it.

Great news re your new practice. Fantastic!

Keepus posted.

Sending loads of love

Astrid.

Anonymous

Hello L-Dub.

I love your updates.

I come here to check in every week or so now. So I can get news from you and Helen.

AC The red devil

Bleh!!!!!!

One down girl!

You can do this. Of course you can. And then rebuild. Yep. You will love the new model I promise.

No-one wants to go down in the muck but after....we know ourselves and therefore others more deeply

That's my experience of it down the track.

Perspective is adjusted and changed forever.

Sending a gigantic cyber hug as always.

Astrid.

LW422

Howdy, Astrid. Nice to hear from you, girlie. Hope you're doing well these days. Hugs back to you!

LW422

Just thought I'd update this thread with progress so far. I've had three AC's, though the one yesterday was "reduced dosage"; normally 60/600 but I got 50/500 due to severe SEs. I also had an echo-cardiogram this week because my heart rate has increased drastically with chemo. Thankfully the echo was normal, so that's a relief.

Also, the reduced dose AC has not flattened me like the full dose; I only hope it's still "flattening" those cancer cells! I guess my MO decided it was better to try a reduced dose than to stop it altogether, and I agree.

In other news, I already have my mastectomy scheduled! August 23 is "M-Day". I'm also having a PS do the lympho-venous bypass microsurgery at the same time, as well as the asthetic flat closure. I'm really hoping that bypass will help prevent lymphedema since I have to have two levels of nodes removed.

So my last reduced-dose AC on July 29 and surgery on August 23. Hopefully I can have all of this wrapped up before the holidays!!

Astrid--where the heck are you, girlie??

LW422

Closing out my thread... 11 months later and today was my last radiation boost, completing my active treatment. I had a single mastectomy on August 23 with 2 levels of lymph nodes removed (32 in all...none were positive for cancer). Happily received news of "PCR" to chemo. Started radiation (30 treatments) on October 4; finished today.

I was released by MO, SO and RO and will begin the every-3-month monitoring. It will be weird to be on my own, after so many months of scheduled torture and angst. I'm so thankful that it is done and also for this place where I received such great support and kindness from a bunch of faceless strangers. Thanks again to all of you. We need each other.

MinusTwo

LW - congrats on crossing the finish line. You made it, and just in time for the holidays!!! Hope you can take some time now to decompress and do things that you want to do. For example Friday & Saturday I declared personal days and did NOTHING except read a book. Truly - not one thing. And Sunday I met my nephew & his family for dinner at a restaurant that requires masking for customers & employees so we all felt relatively safe.

Wishing you the best as you sync back into your "real" life.

LW422

Hey -2! Hard to believe I'm done with active treatment; seems like just a month ago I got the news that turned my world upside-down. While going through treatment it seemed like time was dragging, but suddenly it's done.

I'm nervous to be "released" and on my own. As an IBC patient I'll see my MO every three months for the next 2 years, so I suppose that will help. Once I get healed from radiation and get some relief from the nerve damage and tightness of surgery I'll be able to put this in the past. Thanks for helping me along the way.

believegr8things

Just diagnosed with IDC stage 1 ER+ PR+, HER2- right breast last week. Surgery is set for 6/29/22. Lumpectomy and sentinel nodes followed by radiation and hormonal therapy. I’ve been taking care of my 87 old Mom. She’s in a nursing home, but care is sketchy unless family is present. She can’t safely feed herself and if we aren’t there she’s often left alone with her tray to figure it out. She falls asleep and they take her tray saying she didn’t feel like eating today. Argh! So why am I mentioning this? Last week they announced they’ve had a couple of cases of Covid in the facility. My surgeon has advised if I get Covid surgery is postponed until 2 weeks after last symptoms and it may mess up my lymph node biopsies. Struggling here. No volunteers to step up and help my sister cover meals in my absence. What would you do?

LW422

Hello Believegr8things and welcome to the Worst Club in the World; sorry you have to join us but you've come to a supportive place. I believe this is the time you must focus on yourself for a bit and hopefully your sister can manage for a few weeks. Can you speak to a supervisor at the nursing home and explain your dilemma? You certainly don't want to be exposed to Covid at this point and you'll need some recovery time following your surgery. I'm so sorry that you have to deal with additional stress on top of your diagnosis. Take care and let us know how it goes; my best to you.

Moderators

Oh believegr8things, we're so sorry you find yourself in this predicament all around! lw422 says it so well. Great suggestions. It may be that you need to temporarily hire or solicit additional help to stay on track with what you need to do for your health. We hope you get the support you and she needs to move past this difficult time.

Hugs, The Mods

dizzydodo

I am fairly new to diagnosis of breast cancer left breast. Cancer lump in lower left side of breast has been a pain. I keep getting little "zingers" thru my left nipple. Working on mobility in left arm...not sure how careful they are during the surgery nor how they pin that left arm back. Not fun anyway but working on keeping mobility at a very good level. I have young grands, tho I am 70+ so I need to have strength in that left arm and mobility. I went on tamoxifen, and have had such dizziness that it is really interfering with walking and even driving. I am going to stop it. I wanted a mastectomy, but that has not happened yet. Prior to this cancer I was quite active with gardening, walking, line dancing. Diagnosis: ER+ PR+ Intraductal is the diagnosis. Lymph nodes were all negative for cancer. Doctor put me on Letrozole. After reading the side effects I decided not to use Letrozole. Next was/is Tamoxaphen. I started out on it over a month ago. The biggest issue is dizzyness. It seems to be getting worse. Any advice on this? I had to pull over and asked my husband to drive again. We were taking turns driving to a funeral several hours away. I have never before been dizzy when driving, and it was very weird! Sitting still, looking forward, and suddenly feeling like I am piloting a spinning plane. Has anyone out there had this happen? My blood pressure is going UP also on this drug. Thank you for your comments!!! suzie

Moderators

Dear dizzydodo,

Welcome to the BCO community. We are sorry that your cancer diagnosis brought you here but so glad that you reached out to join us. You may want to check out the forum on Hormonal Therapy where others may see your questions and be able to respond. There are a number of active topics that address questions about Tamoxifen or you can start your own topic. Let us know how we can be of assistance so you can connect to the support and information that you need.

The Mods

LW422

Hello Suzie and welcome to the place nobody wants to be. Sorry for your diagnosis and for the issues you're having with treatment. I didn't have Tamoxifen but there are lots of threads about it. Use the forum search feature and you'll get a lot of information. Good luck and I hope the dizziness and BP issues will be resolved. Take care.

Rah2464

Dizzydodo sorry to hear the Tamoxifen is impacting you in this way. Please get to your MO and have a frank discussion about options. Perhaps you can go on a low dose (5 mg) and see how that works rather than take nothing at all. This medication can be extremely dehydrating which might account for some of your issues. Try adding a small gatorade daily into your increased (ha) water intake to counter some of the effects.