Calling All with Tumors 6 cm +

Hey Big Sistas,

For you all who are achey from the AIs, I thought I would share that Effexor has really helped me with the aches and pains. After 6 months on anastrazole, I could hardly get up after sitting for 10 or 15 minutes and my hands were stiff like claws (not good for a violinist). I was having horrible hot flashes and my 50-ish female NP put me on Effexor (37.5 mg). It helped with the hot flashes in 3 or 4 days, which was awesome. After about two weeks I suddenly realized that I felt REALLY good, the aches and pains were much better. I happened to look up effexor on Drugs.com and found out it is also give off label for fibromyalgia pain. I am taking it twice per day now and I would say both hot flashes and pain are reduced by about 90%. I have sung the praises of Effexor before, so forgive me if you think I'm a drug rep. I just think it could help, you might want to give it a try!

Xeloda is for...... I don't really know. MO said w locally advanced BC he wanted me on low dose while I had rads and then regular dose after that. I declined low dose during rads and glad I did bc rads fried me. Had to take a 9 day break to heal towards the end and ended up skipping the boosts.



I think stage 3 gals may start having Xeloda recommended just in case. I know at least one stage 4 gal here was applauding my MO's decision to put me on now.



I objected to the Xeloda but MO so earnestly wanted me on it that after reading about it I agreed to it. I am supposed to do 4 cycles. 14 days on, 7 days off. I am on day 3 of my 2nd cycle. I was at Disneyland during my 1st week off.



It is thus far much easier to tolerate than any other chemo.

The Estrogen Sucking Drug does suck and I admit every once in a while I skip a dose. Rebellion maybe. But then I read about a BC sis becoming an angel and I suck it up and stay on course.



Estring has been a good thing for me and tests indicate it is not increasing the estrogen in my overall body. The vag dryness and urinary SE's were killing me. I joked that it felt like my vagina was going to dry up, fall out and blow away just from walking around. Estring put an end to that in less than a week.

If I remember correctly my onc said I could have it removed but she likes to keep them in for a few more years (or maybe one more year). The reason is recurrence is highest the year after treatment stops as well as the first 3 years since diagnosis especially for us aggressive gals (like HER2+ and triple negative). Once they remove the port my treatment center will not place it back in the same place due to increased risk of blood clots.

So once she said that I got paranoid and didn't want to jinx things. Nice thing is if I need blood drawn I can get it from there. Having nodes on both sides (10/4) and LE on one side no one is sticking my arms. Not sure how I'm going to get them to draw blood from my food in the future.

Thanks windlass but these spots might just be something I've had since I was a kid. They may not need to go away… as long as they don't grow that's fine.  I've always taken pretty good care of myself except I did smoke at one time. I still have the sheet my onc gave me after surgery outlining what treatment I would get. At the top it says "Health=Excellent." I always found that funny but then I supposed I just had surgery so I was NED.

I do believe you can have your port on the same side. There might even be a chance they can put it in the same place but the  risk of blood clots goes up… that's why my treatment center won't do it. So if you want it in your arm they can do that.

Hello ladies, I hope I am not intruding. May I join this party? LOL. :-)



I haven't read too many of the comments on this thread but certainly will to catch up and get to know everybody. I did see one post that caught my eye from J-Bug discussing implants and wanted to add my recent personal experience. J-Bug's comment was that she was surprised to hear that one of the posters on this thread had implants and didn't think implants were an option. I'm assuming J-Bug meant that she didn't think implants were an option to those with large tumors (please correct me if this assumption is wrong, or if the implant discussion resulted in a satisfactory answer). I am referencing the implant subject because I did have implant reconstruction and my tumor was 10.5 cm. I do not believe the option of implants is based on tumor size, in the large majority of cases. I believe one of the many criteria it is based on is whether the surgeon can perform breast skin sparing surgery to preserve enough skin (as well as basing it on what the surgeon sees when he operates - my surgeon said he planned to do the implants but it all depended on what he saw when he opened me up - I do not know the details of that though, and as long as there was enough of a clean margin between the tumor and the skin and he was comfortable enough to spare the breast skin). The other option for implants is to have tissue expanders implanted - usually done when there is not enough skin to place the implant during surgery. One reason that implants might not be offered may be for those who will have to have radiation. For years they have not recommended having an implant if you will have to undergo radiation because of the effect the rads will have on the implant. Lately they (PS and RO) have been coming around to the idea of allowing implants prior to radiation but providing patient with information about the risks and possible harm that can occur to the implant. I've read in a number of posts about the fact that radiated skin is difficult to work with and that if I waited I may have not been able to get implants. I wanted implants rather than the flap surgery b/c my PS said that the most he could do for me is to make me a size B breast. That was not acceptable for me b/c I was a DD for most of my life. However, I got the implants with the knowledge that if the implants failed and/or I was unhappy with them, I had the option of the flap surgery (I hope to avoid this since it would be another surgery for me and it would be a very long and intricate surgery). Please note that all of this info is just my personal experience and from things I have read (I'm not good at remembering statistics and things like that) and I would be the first to admit if something I write is wrong and I welcome any suggestions.



Look forward to "meeting" you all!



Best regards, Cathy

Thanks for the welcome J-Bug! We have similarities in our diagnosis and in our treatments. How did you do on chemo? I had it rough during the 4 AC treatments. Just so glad that chemo is over. Everything else has been a piece of cake. I would do 10 BMX surgeries before I would do chemo!



I'm sorry to hear about your reconstruction limbo. It sucks to be stuck when all you want to do is finish up everything and put all of this stuff behind you. Good luck and I hope it works out for you soon.

Elisabeth that's because I coined the term Estrogen Sucking Drug. (Guess you could call it a lagoism) My NP and my ophthalmologist were cracking up this week when I called it that. They never heard of it either. Keep moving. I do have stiffness but I'm sure it would be a lot worse if I didn't exercise and try to keep moving throughout the day. I had lunch with a friend yesterday. We sat for 3 1/2 hours. You should have seen us when we got up… but withing 30-60 seconds we were better.

Cigi56 I have implants (tumor around 6-6.5cm including non-invasive in my former 34 A-B breasts). We assumed I would need  radiation but I was in a gray area and got a pass. My PS was willing to give it a try but there are complications that can happen if you get radiation. Many times the do a Latissimus Dorsi flap (taken from the back) to replace the damaged skin if the radiated skin isn't working/fails. 

J-Bug I just saw my friends reconstruction by Dr. Massey*. I think she got one of the bilateral GAP flap procedures. We kid and call them her butt boobs. She had radiation and started with expanders but got some capsular contraction with the expanders. Instead of moving forward she decided on the butt boobs after researching and learning about these procedures…

Some of us (like my friend and myself) don't have enough tissue to take it from the tummy or back. I know if I went in this direction I would have to have a stacked procedure because as much as I kid about having big thighs I'm pretty sure I wouldn't have enough for unstacked. Also remember that Dr. Massey* (as well as some other PS) do not like implants. They tend to only recommend them in cases where these other procedures aren't an option. Guess what I'm saying is all PS have their bias as what's the best procedure.

BTW I'm very very happy with my implants. They look awesome but remember I didn't have radiation. I know I didn't want anymore scars so if the implants didn't work I probably would have gone without.

*Check out Dr. Massey's site. She does an excellent job listing all the different reconstruction procedures except for Dr. Khouri method at the Miami Breast Center.

Congratulations bennetts1 Here's to NED and ESD!

Thanks Marina. I know I will. To be honest I'm not that worried about it. No reason to think I won't.

I had a large one too and so had bilateral mx and then radiation. Implants didn't work for me because of the rads. Often, Rads and implants don't mix well - casular contraction (is that how to spell it? something like this).  I had a stacked recon (both belly and butt fat flaps) at NOLA by Dr. DellaCroce. really nice whole body outcome. FYI, I know there was discussion above. 

Hey just checking in. J-Bug I'm thinking about that DIEP surgery too. Congrats on getting a date! That seems a long time off but I hope time flies for you.

Sounds like a good plan!