Hoping I did not wait too long

Hi ktjay, had my last tx on Friday, it went fine, I felt really good Friday night, we even celebrated with crab legs and some wine. Then Saturday came, the steroids started to wear off, then of course the Neulasta, and yesterday and today I'm feeling pretty crappy. I worked today but my energy level has bottomed out. Basically the way I've felt after the last 3, and my eyes watering and burning and heartburn... should I go on? But... it was my last one and for that I am very happy and grateful. Now I'm trying to wrap my mind around the BMX which is scheduled for July 31, I'm getting pretty nervous. I will be having the expanders put in and they will stay till I'm done with radiation. I'm taking a 10 day vacation, then I'll be off work for 2 months so I'm trying to get all my ducks in a row at work. I found someone to cover for me (I do hair in a retirement home) so hopefully everything will be alright. 

I found a PS that I like but I'm going to look for a new MO. I've seen her 3 times now and we do not have a connection at all. She didn't even say anything about my final round of chemo, now kudos or words of encouragement or anything. I'm going to do my follow up with her in August, then I'm going to someone else. I figure I'm going to have to have a MO for a lot of years so I need one I like.

From my experience the 3rd thru the 6th treatments were all the same, except the fatigue got worse and worse. Hopefully you won't experience anything new, it's just a matter of putting up with feeling lousy. Good luck with #5, You'll be all done by the end of July, then you can get on with your life. I forgot, do you have to do rads? Good luck Thursday, hope you don't experience any new SE. Time for me to go to be, have a good night.

Ktjay, I happen to land in this forum and I wish to commend on the fact that you are not getting radiation... I  was initially diagnosed with IDC and DCI to the left breast and it was changed to ILC (tumor 1cm) and DCI!.I  am going to ask my breast surgeon (tomorrow!) for a BMX but he already recommended a lumpectomy with radiation. As you know the sneaky nature of the beast with lobular cancer; I am leaning towards BMX with radiation to the left breast, no chemo...I just wanted to let you know that I have done a lot of research about the lobular cancer ( I am sure you did too) and according to research it showed that there is a better outcome for survival for women with the radiation after surgery than without. Please, question the fact that you aren't getting any..Just food for thought...take care, 

Ineke.

hi Katy - I had neoadjuvant chemo which shrunk my tumor to 3 cm but due to the size of my original tumor I am having rads. Today will be 10 of 28. I finished chemo on May 2 and had surgery June 6. 

Hope all the ladies here are doing well. 

Katy - having one positive node probably pushed you over the top. If your tumor size was borderline the positive node probably bought you the ticket to radiation. The whole breast area is treated even with an MX. If you had a skin sparing MX the skin will be treated. If you didn't, the MX scar will be treated. Also, with a positive node the underarm and possibly the supraclavicular nodes (near the collar bone) will be treated. It is not painful. Some have skin reactions and some don't. Most have some skin darkening. The level of fatigue depends on the person as well. Just like MOs and PSs all ROs are different. Some ask you to apply lotion daily, some say nothing at all. Some allow swimming, some don't. Hopefully you live close to your treatment center because you will be treated every day, Mon-Fri for 5 or 6 weeks. The treatment itself is quick. 15 to 20 min on the table. I just completed 10 and so far so good. There are great rads threads here. Join me on the Summer Rads thread. There are amazing ladies there. 

Hi all, haven't been here for awhile, it's been a busy summer. It's been 4 1/2 weeks since my last chemo, starting to feel more like my old self except for the weight gain. I hate it, started doing a slow 3 mile run every other day and working out with weights, ugghh...so hard to get back into. I was hoping to lose a few pounds before my surgery but it doesn't want to budge.

anyway...Ktjay, I am having a BMX on January 7th with immediate recon and 35 rounds of rads. I was hoping to only have the radiation to the axillary but my BS, PS and RO all feel it's necessary to do the chest as well. I am going to try and hold off as long as I can because the PS says the rads may really interfere with healing. I'm hoping not to start it for at least 6 weeks. At this point they suspect my mass to be 2.5-3 cm, with 2 nodes but my BS says she won't know for sure till she gets in there. It was only the MO that talked about the lumpectomy but my BS says that was never her intention since it's ILC and unable to be detected on mammograms. I don't really know what to tell you about the radiation, it does seem to decrease the odds of recurence by up to 30% so that's something to think about but I am afraid of the SE as well. I guess you proabably need to find out the benefits and weigh the risk. This is all just so hard

Aff, and Ineke, took my Xanax and fading fast, got to go to bed I'll try and catch up tomorrow. Hope you all and a restful night's sleep, sweet dreams

I had chemo before surgery as well. Due to the original size of my tumor - 8 cm - the plan was neoadjuvant chemo to try to shrink the tumor before surgery. My MO said she prefers neoadjuvant chemo because she can tell if the chemo is working or not. It was hard knowing I was living with cancer still in my body for all those months but I felt better knowing the chemo was working as the tumor shrunk. It went from 8 cm to 3 cm at the time of my surgery. I would have preferred a complete response but that is not always the case with ILC. 

I had rad #15 of 28 today and so far no SE. For me it was never a question due to the enormous size of the tumor. Ktjay - I hope the Summer Rads ladies were able to give you some good info.

I started Tamoxifen last night. I am so glad I took it before bed. It made me feel very strange and although I cannot remember them, I feel like I had weird dreams all night.

Hello, everyone. I saw this thread and had to weigh in. I was diagnosed with ILC last summer. I had the same experience as many of you have mentioned. I did not feel a lump only thickness in the are of my breast that had always been dense and thick. I had had a mammogram a few months earlier (been getting them regularly since I was 30 because of all the lumpiness of the tissue), and it showed nothing. My GYN had done an exam at about the same time as the mammogram and felt nothing. I'll admit to blowing off one sign. I noticed some nipple retraction, but it was gone the next day, and I wrote it off to scar tissue where I'd had a previous biopsy. I didn't go to the doc until I noticed the thickness in my left breast was more significant than in the right. By that time, I had a big (5x8cm) tumor. My oncologist said it would have been there for years. I know it doesn't show on mammograms, but none of the many ultrasounds I had saw it either. Like some of you, I was pissed at myself for not going in sooner. The only thing that made me feel better was when my GYN said she hadn't thought it felt like anything either. Just our luck to get the stealth breast cancer, eh? I had a bilateral mastectomy last August followed by 4 rounds of taxotere and cytoxan and 6 weeks of rads. Now I'm trying to decide on recon, and annoyed that nobody, particularly the PS I consulted last year, told me that I couldn't just have implants after rads.  

Good luck to all of you who are going through treatment. It's a long haul, but it does end eventually. I was actually a bit sorry when rads ended because the techs were so nice.

Amy

I'm not a candidate for a DIEP because I have a large vertical scar on my abdomen from ovarian cancer surgery 11 years ago. I really didn't want any of the flap procedures anyway. I'd like to keep my currently untouched and still functional body parts as they are. I also can't afford a lengthy recovery period where I need to be off work for 6 or 8 weeks. It would seem that my only option for recon though is the LD flap or one of the ones where they use butt or thigh tissue. The LD flap is the least invasive of those with the shortest recovery from what I've read. I'm not happy about having them mucking around with my shoulder muscle, but I also hate the way I look. There are no good choices unfortunately. I have another appointment with the PS on the 20th. I've read the book he recommended and now have many more questions to ask him. I'm scared to death that I'll lose upper body strength. He says I shouldn't to any significant degree, but some women seem to. I've been a bit depressed since he first told me I can't have just simple implants. (That's a lie. I've been a lot depressed.)  My estrogen deprivation mood swings aren't helping either! I wish I could be like the tough women who go flat and say the heck with it. But I'm not. I'm tired of either wearing uncomfortable prosthetics or hiding under scarves and other drapey clothing. It wasn't so bad in the winter, but it's awful in the summer.

I'm glad you had good luck with the DIEP. Best of luck with the rest of your rads. I hope you skin holds up well.