TCHP Ladies Late 2014 / Early 2015

DaisyQ

Lorie: I want the darn things out. It just feels right for me. My gyn was very supportive and referred me to gyn oncologist so I am scheduling an appointment early this summer. I had surgery 3 weeks PFC. Of course, I did not know my response to TCHP so I was ready to send the girls (and whatever cancer was left) packing! Are you having a BMX? I started out DD and left the hospital with TE's partially filled--about 1/3 my original size. Fills were not painful at all. I did not want to return to a DD so I stopped around a large C cup (3 fills after surgery). I was also anxious to get on with radiation. Let me know if you have any questions.

SugarCakes

Loriekg, I did post somewhere else on a post more specific to lymph node removal. I met with the BS yesterday. She was definitely thinking worst case when I was initially diagnosed. Given my response to treatment (and I think partly bc she knows I am looking into a study) she has given me more options: LX, UMX, and BMX. Good to have options, but it makes the decisions harder. As for lymph nodes, she said she is willing to test the Sentinel node(s) and the one node that was marked after biopsy (if it's not the sentinel node). If those test negative for cancer, she will stop. If they test positive, she will proceed with ALND. I sent her an email asking for some clarification. I have read that it's not always apparent which are the sentinel nodes. I want to know if she would take all possibilities or use the blue dye injection to help identify the sentinel node. Also, I want to know if ALND is needed, are we taking I, II, and III. I really want the absolute least amount of nodes removed as possible.

I am still leaning towards double MX. I have concerns about them not catching a recurrence or new breast cancer quickly given my "extremely" dense breast tissue and existing calcifications. If I knew it could be caught in time for just mastectomy, I might would go for the LX or UMX. I really don't want to go trough chemo again, even though mine hasn't been the worst. The fear of another cancer spreading is real! I knowthere are no guarantees, but Double MX may bring more peace of mind to me. BS said for us to revisit after I consult with the PSs.

DaisyQ

SugarCakes: My BS offered LX and UMX as options along with BMX. I had dense breasts too and a clean mammo 6 months prior to discovering my lump on self exam. I did NOT want to go back to monitoring every 6 months, annual MRI's and all the darn stress that came along with it. Of course, the anxiety would be worse because I know what breast cancer treatment is like. I echo all your feelings, and have not regretted my decision at all. Let me know if you have any questions.

MaryJC

question: in neo adjuvant chemo, shouldn't the lymph nodes test negative anyway since the chemo kills the cancer?

SugarCakes

I guess the nodes would have to be part of the pCR?? I'm certainly hoping for that.

BS and MO got back with me both saying somewhere between 7 and 10% chance of recurrence is same breast and same percent chance of new cancer in the second breast in 10 years. Not sure if that means WITHIN 10 years or after 10 years. Either way, I'm really thinking BMX unless PS says something to freak me out! Have appt Mondsy afternoon. Can't wait. Gotta clean up my list of questions

raleighgirl

Hey ladies! It's been a long day.. Mammo and ultrasound this morning and now in chemo.

The mammo still shows masses. My largest, however, measures at 1.7cm, was 2.4cm before. The radiologist said I should be happy that the lymph node masses have gotten smaller in size. Overall he have me the impression that there had not been much change to the tumors due to chemo. I was very upset.

I saw my doctor afterwards and she told me not to be discouraged and that the radiologist should not have been negative. His job is not in oncology. She reminded me that my tumors can not be palpated AT ALL and that clinically, that is very positive. She thought it could be some scar tissue that is being seen on mammo. Also reminded me that even if I do not get a PCR, that is ok. I can still be cured. So, roller coaster of a day.

Also met with surgeon today and I only have the option of mastectomy with ALND. So, I will do a uni and since have delayed recon(6 months after end of radiation) I will have time to decide of I want to remove to remaining breast. I'm happy I will have some time to think about that.

So, I hope I gave you girls a reminder that regardless of what ultrasound or mammo show, it is important to listen to your oncologist.

My surgery is scheduled for June 11.

Cassie Cat-good to hear your Herceptin only is going well!

Sugar cakes//Lori/maryjc-I hope I answered some questions for you

To everyone else, thank you so much for the positivity and support!!

Italychick

Do they always do AlnD with a mastectomy? I had a lumpectomy, removed 1.3 cm IDC with all margins over .5 mm, and three nodes clean. But I guess I can still do a mastectomy too, but not sure if at this point it would be overkill. Also had PET scan, bone scan and MRI, and nothing else turned up. My PCP said I will always have to be vigilant because it can turn up again. But I have seen posts where women recurred even after mastectomy. So I guess there are no easy answers.

Initially I told my breast surgeon I would go for Barbie boobs, but now not so sure. Just worried that my ER and PR receptors are both negative is why I would consider mastectomy.

MaryJC

I've read that the rate is nearly the same for both lumpectomy and mastectomy. If no boobs, where does it recur tho? Sorry if silly question

MaryJC

meanwhile I think it's important to keep in mind the legions of ladies with all types of bc that have not recurred. We may not here from them as much on these boards bec they've moved on and resuming their lives naturally. My aunt (by marriage) is a survivor, was node positive. Had chemo, radiation and no recurrence and many others.

Let's all keep the faith that we each are making the best informed decisions for ourselves. And God willing whatever we choose is gonna work!

Italychick

the recurrence posts I have seen seem to indicate it can recur in the scar. Also, they can't remove all breast tissue since it runs along our sides and in the back area some. I had two great aunts who had breast cancer in their 50s and 60s, and one lived for 45 years, and the other lived for 30 years. They died at ages 99 and 92, so I am hopeful.

MaryJC

that is very encouraging! ESP since the chemo may be diff from the time they were diagnosed. Were u brcca tested? I ask bec u mentioned your aunts. My mom had bc but was post menupausal. No other bc cancer but she does have colorectal. I tested bcaa neg.

Italychick

I haven't done the BRCA test yet, still debating. If I do it, I would mainly do it for my daughter and granddaughters. But since my mom and none of her four sisters have ever had breast cancer, I'm thinking it isn't BRCA. My MO said she would be extremely surprised if I came back BRCA positive. And since my aunts got it so late in life, probably not BRCA from what I can figure out. But like I said, still debating. And if I could get it approved. No breast cancer on my grandmothers side, only the two great aunts on my grandfathers side. And my grandfather had lymphoma in his 30s, and had cobalt treatment and lived to be 75. My great grandmother died from colon cancer in her 90s. So that could be suggestive of Lynch, but as far as I can tell, there are no treatments for that. Just do routine colonoscopies.

I can't even find out if either of them did chemo. My one great aunt did not because everybody was shocked that she didn't. But the one that lived to 99 I don't know what treatments she did. That generation was superstitious. They wanted to amputate my grandfathers leg and he said no. And he lived another 40+ years, and didn't die from cancer. So for all I know she didn't do chemo either. This was a very small Midwestern town in the 60s so who knows

Just hoping I have their resistant genes and can live a long time.

MaryJC

you'll live longer with your diet and exercise. I look at it as something we need to get out of our systems.

IndyGal35

I will be starting radiation this summer, and I have some questions for you ladies that are in/through the radiation phase:

What is the timeline/process after your first post-surgery meeting with the RO? 

Did you need a mold? How did they make it?  How long did it take to create it?

Did you get tattoos for radiation markers?  If so, when did they do that?

How long did it take to get your sim?

How long after the sim did you actually start radiation?

DaisyQ

Hi IndyGal,

I finished 28 rounds of IMRT rads almost 3 weeks ago. I'll try to answer your questions..

I met with my RO before my 5th round of chemo, then again right before BMX w/ tissue expanders (3 weeks PFC). He recommended starting rads no more than 8 weeks after surgery. The next time I saw my RO was at my simulation appt. 6 weeks post surgery. The simulation took about 30 mins and included the CT scan, tattoos, as well as the bolus and head positioning mold.

The head positioning mold material (kind of a block-shape) was warmed and softened. They got me into position and I placed my head into the mold with my face turned away from the right side cancer-boob. My ear was in the center of the mold. It cooled and was set very quickly.

The bolus is a sticky, floppy material placed over the breast. It was cut and molded to the shape of the breast. It was described to me as a second layer of skin used to draw rads more to the surface. My techs said that not all patients have a bolus for rads.

I also got tapes and markings around the tattoos to aid with positioning. They stayed on throughout treatment.

My first treatment was about a week after simulation.

I hope this helps. Let me know if you have any other questions!

DaisyQ

I forgot to mention the lung function test! The same day as simulation, I saw the pulmonologist and blew into a machine about 3 times to measure baseline lung function. There is a chance that rads "scatter" might effect my lung function so they wanted a baseline. So far, so good. No lung issues.

CassieCat

IndyGal, here is how it went for me...

I had my first RO meeting about 12 days after surgery. That was a long consult and after that, they scheduled me for the CT scan. That took place about 2 weeks later and took about 45 minutes. I wasn't prepared to be lying there with my arms up over my head the whole time, and it was uncomfortable. I had decent range of motion but in retrospect wish I had done more stretching. They made the mold that day for my arms and head (turned to the side, like Daisy), which was no big deal. I also got most of my tiny tattoos that day. I think my sim and first treatment was about a week after that. The first treatment was also lengthy, and I think I got one more tattoo that day.

SugarCakes

daisyQ, are you planning to get reconstruction with implants or are TE'sused for flap reconstructions as well?

loriekg

For those who have already had surgery--how long did you wait after your last chemo? I was told 3 weeks. My BS happens to be out of town that week (first week of June) and my plastic surgeon is out of town the following week. So now if I schedule June 17th that would be 5 weeks after chemo. I'm feeling like that is too long...am I just looking for something to worry about? Is it irrational to think that my tumor needs to be out before the effects of the chemo subsides? (I have asked if I can have the BMX a week earlier, which would make it 2 1/2 weeks pfc...still waiting to hear if BS will okay that, but I have a feeling she'll say no.)

DaisyQ

SugarCakes, I am having reconstruction with implants in late August/early September. I did not even look into flap reconstruction.. I was really surprised how easy the BMX recovery and tissue expander fills were (there are horror stories out there..). The most annoying part were the drains that stayed in almost 3 weeks after surgery, but I managed. Looking forward to the final step! How are you feeling?

PMR53

Lorie

My S0 said surgery 3 to 6 weeks after chemo for surgery. I think you need to let your body recover and begin to heal. Your within that time frame !!!

PMR53

SugarCakes

Thanks DaisyQ. I'm feeling awful, emotionally. Just feeling extra alone facing all this crap. Good to know others that are going for implants even with radiation. Anxious to consult with PS's next week. One looks all of 25 years old online. Sigh.

Had chemo this past Monday so it make sense this is one of my worst days. Still, the future just feels stressful. Next month, next year, every year from now.

Home alone while everyone is at a mega company picnic. I was there last year, happy as all get out. Even if I could have physically made it today, I would feel like crap and would just be putting on a happy face for eberyone else.

CassieCat

Lorie, my surgery was about 3.5 weeks after finishing chemo. My surgeon wanted to wait another ten days or so but I was anxious to get it done so I could finally get back to work. He made sure my blood counts had recovered enough, etc.

sugarCakes, it will get better. {{hugs}} for you.

raleighgirl

Lorie-my surgery is scheduled five weeks after my last chemo. Surgeon says up to 8 weeks is ok. I told her my concerns as far as cancer spreading. She was not worried about this at all.

Sugarcakes-I know how you are feeling. One day I will be doing great emotionally, the next day I will be very depressed and worried about the future. I am also missing my life before cancer. It's tough feeling left out when life continues as normal at work. I miss my job! But, we will get through this. It's just a long journey to get to the other side

loriekg

Thanks for answering about the time frame after chemo. I am just anxious to get things going! I never heard back from BS if I could move surgery up.

Daisy—I am so happy to hear something positive about those tissue expanders! I have been fully expecting to have two misshapen, painful boulders on my chest for a few months! (Maybe I should keep expecting that…so I will either be prepared or pleasantly surprised!) But three weeks for the drains!? OMG!

SugarCakes—I totally get it. I can be fine one minute, then something gets in my head and I feel like I'm about to shatter. I hate not being the strong, always on the go, carefree person I was just months ago. (Ok maybe not carefree with two teenagers!--but certainly no worries about my health! LOL) DH is wanting to make summer plans to go to the beach. I'm like—um, I don't think I will be feeling up to it. (Really?! Surgery mid June? Maybe with drains for three weeks? I can't picture myself sitting on a windy beach worrying about my wig blowing off…! UGH)

IndyGal35

Thanks so much for the info on the rads!!!! I met with the RO once before chemo, but I haven't seen her since. My last chemo is scheduled for 6/23, and it looks like my bmx will be 7/19. There's something about having dates on a calendar that makes me feel more in control. My 4th chemo is Tuesday, and I'm just dreading it so much. I have 6 weeks to go, and this part will be over. I just keep checking off days and trying to make them count the best I can!

I met with the PS last week. I still haven't decided on reconstruction, but he said that, if I want implants, I need immediate construction with TE's. If I opt out of immediate construction with TE's, autologous donation would be my only option. He said I wouldn't need TE's for autologous donation and that my timeline would be the same for rads regardless of what method I choose and/or forego. Hope that info helps as well

CassieCat

I think I'll bring up recon when I se my BS later this month. He thinks I can get recon done, but I don't have TEs or anything yet. All of this is so stressful and complicated. I'm small to begin with and can't find anything temporary that isn't too big for my MX side compared to my healthy side.

DaisyQ

SugarCakes,

I completely understand how you feel emotionally--I think we all do. While the physical side effects of chemo, surgery, and radiation are tough; the hardest part for me is recovering emotionally. If it helps, my lowest point was towards the end of chemo. I was sick, tired, sad, pissed off, and looked like an alien-zombie. Not even close to that person I used to be and I just wanted someone to tell me this treatment would work, that all I had been put through was worth it. It's a really hard time!

I started seeing a counselor through my cancer center about 2/3 through chemo. I knew I was heading off a cliff. She's helped me realize that I needed to mourn the loss of innocence. Coming face-to-face with cancer forced me to look at my mortality in a way I never had to before. I wanted those old days back. I've worked on processing different stages of grief. I still have days where I feel hopeless, afraid, incredibly angry, and deeply sad. But I also have days where I feel pretty clear-minded, strong, and badass. I fully expect that my badass days will outnumber my hopeless ones..

I started a Mindful Meditation class (also through my cancer center) last week. I hope it will help with my anxiety, negative thoughts, and reinforce living in the present. My core is a sloppy, flabby, weak mess. I have zero flexibility and my back is in knots. I signed up for a 12-week LiveStrong Fitness program at the YMCA (it's free!) this summer. I like the idea of taking control of my emotional and physical health again. I'll be damned if I let cancer keep those.

I find myself hanging on to the updates from women 1, 5, 14 years out who are doing so well, and live their lives without thinking about cancer all the time. I am so grateful they swing back around with words of encouragement. We're not alone. This board is filled with amazing, strong women. And I count us among them.

I hope you start to feel better as you wrap up chemo and move on to surgery. It does get better. Sending you lots and lots of hugs. Good luck with your PS appointments this week.

Amy

SugarCakes

copying and pasting to avoid retyping...

I am leaning towards skin and nipple sparing BMX. Had my first consult with a PS today. I have existing implants. He doesn't think I'm a candidate for flaps as I don't have enough fat. I wasn't really interested in that route anyway. He said I am a good candidate of either of these options: Direct Implant or TE first with exchange later. Thing is, radiation is on the table... which he did not realize and he encouraged me to question the benefit of the radiation. Like, how much does it improve my odds against recurrence. He feels TE first would lead to a better cosmetic result. He would overfill the TE which would lead to a more softened / relaxed droop. The timeline of TE vs. direct implant has me thinking UGH!!! but we are talking a few more months for something I may like more over an extended period of my life. I know it's up to me, but what do you ladies think? What have you experienced or heard? He said with direct implant followed by radiation, there's a greater chance of tightening, assemmetry, etc... there really is no fix. More surgery would create more scar tissue. With TE he could clear the initial scar tissue and though it would come back, it should not come back as much.

SugarCakes

Thanks Amy. It occurred to me over the weekend that I had not taken advantage of the support groups and counseling. I was a warrior when this thing started out and I had my (now ex) BF beside me. I'm positive most of the time, but sometime, it is definitely an act and that's tiring. I'm going to look into the groups and counseling. It's not too late. There is still a very long road ahead.