Alice, Hanoria and Sue

Hi Ladies,

the comdputer sent my post to cyberspace, so I'll grind my teeth and try again.

Kelly -- a movie star in our midst! Congratulations! Let us know if/when it will be broadcast. You have so much on your plate right now, I'm impressed that you can add this to this mix.
It also sounds like you have a lot of stress going on right now. Life always seems to throw it in our way, but sometimes it gets overwhelming. I attached a present to this post -- it's a tub full of hot water, some gentle piano music in the background, and a lavender scented candle. Hope it helps.

Kelly, great news. I hope Jake pulls through for you. Your friend, Robin, is also in my thoughts and prayers. Tough days. Take a minute and breathe...know we're all here for you and praying for you, too.

Jackie

hi girls,
I feel somewhat depressed, and my left breast is still painful. I'm looking for a spot on our beloved bc.org where I will be relevant; it seems my current misery is an outflow of my MammoSite experience and thus perhaps i will fit in.
Had surgery day before last to re-excise the scar tissue from MammoSite radiation and subsequent very persistent seroma. In Jan - March it was aspirated by needle 3 times, 35 ml. 25 ml. and then only 7 ml. Seemed to do better, even though there was still a LOT of tenderness.
Had surgery on 08/23/06, radiation from about 08/27til 09/05/06, then DD A/C until 12/04/06. Started Herceptin 12/14/06, every 3 weeks the big dose.

Two months ago, just after a Herceptin infusion, I got a very sharp burning pain across the ribs under the affected left breast, which the oncologist brushed off as "just a muscle spasm". It calmed a little after 3 weeks, but was still very bothersome after 7 weeks. So, in the 8th week of dealing with the "muscle spasm", I experienced a sudden escalation in pain in my longsuffering left breastie (poor thing had been through so much!) Six nights ago, as I lay down in bed and became horizontal, I felt some painful movement within my breast, then sharp pain. Whole breast became excruciatingly painful to the touch, (as though nerve endings were involved, in some way). 5:30 a.m. I couldn't stand it any more (even with painkillers) so i call my primary care doc, who is an internist. Saw him 9:30 a.m. but no diagnosis, he vaguely thinks my ribs are involved, perhaps a ligament. Very vague. So I ask him to order an ultrasound, as i have a scheduled follow-up appntmnt with my surgeon coming up, and ultrasound might help.
Rest of day in very bad pain, and thru the night. Owie, the breast does not want to be touched. Showing redness along the lumpectomy scar, and a mass can clearly be felt. Next day, Wednesday, I go for ultrasound and has a chance to look at seroma diagnosis ultrasound of 12/06, and compare. Then it showed a clear space with clean edges, filled with fluid, now it shows very jagged rough interior "lining" so to speak in this seroma space.
See surgeon the next day. Thursday. Large outer area is swollen hard, with redness on skin spreading, but my temp remains under 100. As much as i dread, surgeon rationalizes that we need to attempt a needle aspiration which might bring dramatic relief, as well as liquid to send for lab analysis.
His assistant give me her hand to hang onto, and he used an ultrasound machine in his office to guide the needle. Oh my. Sweet assistant says It's Okay to cry ... It's just, there's been so much pain already!
doc gets hardly any liquid and doesn't like the cloudiness of it, so decision is made. Liquid goes to lab, and they schedule surgery on outpatient basis at local hospital for re-excision.
So Friday p.m. I had that surgery, and surgeon decides to keep me there overnight, which feels very good to me (isn't a bit of morphine a wonderful thing) :-) He put in a JP Drain (or someting close-sounding) and I empty it and record how much, take my Kephlex antibiotic which was started by IV in the hospital, and bringing my Coumadin levels back up (using that because a clot formed about 10 weeks ago around the stem of the catheter of my port).

I had planned to have my port removed but after talking it over just prior to going into operating room before this re-excision, doc and i both felt that we should focus on what's wrong with my left breast and re-appraise the status of the port at a later stage.

Oh, I am just so weary of the battle! A year ago I had just been diagnozed, and had definitely anticipated that by now it would all have been history (herstory :-) ? Delina's bc history. Written in a book, the word Finis at the end. Instead, I still have to pick up the pen, over and over, and write some more.

Please encourage me.
Love and Light to all of us,
Delina

Hi all, this has been quite a rough week. I haven't yet found a place to live. Haven't much felt like it and my dh has had to work alot of OT(unpaid by the way as he is on salary) this week. We are considering getting a mobile home and move it onto some property that my in-laws have. We have plans in the future to build on it, but is on hold because of the medical bills I keep piling up. Anyway, I am off to cardiologist this morning. Neuro won't go forward until he is sure there is nothing going on with heart. I had an ekg at my gp last week and it looked fine, but I do get very tired out doing any kind of streneous activity.

Kelly- I would love to move up north, but dh is working for his elderly father right now because he refuses to retire and is working himself to death, so my hubby has taken less pay to help him out.

Hanoria- Wish your foot surgery was done and over with, but so proud of you for hobbling across the stage at graduation. You go girl. I'm a bit confused about when they are doing MRI. Do you have to wait 6 more months?

Sue- Do you have a big summer planned? I gues having the wedding done is a relief.

Alice- You look great on your Avon site. Pretty in Pink! I will make a donation this week.

Wendy- Where are you? Is everything okay. Hopefully your absense means all is going well with you and you just haven't got time to post. Hope so.

Well, gotta get ready for the dr.

Jackie

Alice-

Hi All,
Finally catching up with this thread. Delina, welcome and so sorry you are going through so much. I know when I had a seroma after my sentinal node surgery, the dr didn't want to drain it because he said it would keep filling up. He wanted my body to absorb it, took a while but it finally went away. The area is still a bit swollen a year later but no pain like you are talking about. I hope they give you some answers soon.
Kelly, My DH didn't get to go to Indy this time since it was the same weekend as the wedding. Hope Jake is doing well and remember to take some time for yourself and relax. Good luck with the mammogram, I have had 2 since my dx and they are no fun. The stress is unbelievable!
Hanoria, sorry about the foot but congratulations on graduating! You should be so proud of yourself, we all are. And DD A/C means dose dense andrimycin and cytoxan. A pretty wicked chemo cocktail!
Alice, good luck with the Avonwalk. And we all have to remember that some good does come from bc. I know I am healthier than I have ever been. On the down side, it is a constant in my life now, part of every waking moment.
Jackie, I hope you have a place to live soon, what a pain to have to move! I have no big plans for summer, just to get my house back in order. Last summer I was in the middle of chemo and working so that took all of my time and energy. I have a short break later this month into mid July and I can't wait to tackle some of this clutter. Because of the drought and water restrictions, I didn't plant anything for the summer. I am bummed but since I can only water early in the morning, it just didn't make sense. We haven't had a drop, it is scary! It thundered today and got really dark but nothing at all! Everything is brown!
The wedding was wonderful and they are back from their honeymoon and settling in. Now both of my boys are married but no grandkids yet, just granddogs!
Hope everyone is doing well.
Sue

Kelly,
YEAH!!!!! Congratulations!

Deline,

You are certainly welcome to stay! We just grouped together because we all had mammosite, some of us had it about 6 months ago. We aren't a snob group -- we're just here to give each other support.

We understand your issues, fears, and need for honest empathy. If you want to stay, you are welcome, but if you want to move on, we understand that, too. You an welcome here, anytime wish to come back.

On another note......

In the last couple weeks I've started to get hit with the joint stiffness that I've heard about. After I drive home from work (45-60 min) I feel like a wire doll, and I have to force each wire part to move so I can get out of the car. By the time I walk around the car and leave the garage, I'm OK again. I have another month of Femara pills. If the stiffness increases in the next month, maybe it's time to try something else.

Had a burst of ambition, and put my kids to work. Every year I try to pick one project in the house. This year it was to be scrub the kitchen -- ceiling, walls, strip the floor and paint behind the stove and sink.

We managed to get it all done except the painting. My project for the year is already done, and it's only June! WOW. (am I now obligated to pick another of the multitude of projects waiting, or can I chill back and let them wait another year? Hmmmmm. Decision, decision, decisions)

Hanoria

Delina,

I can soooo relate to what you are going through. I had mammosite radiation in July, 2004 after a lumpectomy for DCIS. The tumor location was at "6 o'clock" on the breast. At my next mammogram, they found new/different cancer at "12 o'clock" on the same breast. I should have demanded a mastectomy, but my surgeon convinced me to get another lumpectomy. That time it was stage 1 and I required chemo and external rads, so I was basically consumed with treatment for that for several months.

In the meantime, I had a persistent seroma from the first lumpectomy that was becoming increasingly uncomfortable. One year ago today, my surgeon decided to drain the seroma to see if it would make me feel more comfortable in my rib area.

The next thing I knew, I had a cellulitis and a staph infection and spent nearly 2 weeks in the hospital on IV antibiotics and lots of pain meds. I then did 6 months of wound care (radiated tissue does NOT heal well) and finally a mastectomy in April. And I still have not healed from that completely.

While I am a big fan of mammosite radiation, I am a "lesson-learned" by my surgeon.

My cautions to women considering mammosite:

1. The surgeon should wait 4 - 6 weeks after lumpectomy/re-excision to implant the balloon - studies have shown that the chance of persistent seroma is 60% more prevalent when the balloon is implanted sooner than that.

2. If the tumor location is at 6 o'clock on the breast, don't do it. My surgeon has had three mammosite patients with the 6'o'clock tumor location and all have ended unfavorably. She will not consider it for future patients.

3. If you've had mammosite radiation and have a recurrence, it's probably better to go ahead with the mastectomy as opposed to another lumpectomy and external radiation. The cosmetic results are unfavorable and the tissue becomes overly compromised by all that radiation.

I have been avoiding posting here, because I'm not exactly "rah-rah" about mammosite therapy, but I think it's important to share my experience.

Alice,

If you google "mammosite seroma" you'll find references to the study.

Here's one link (I pasted the relevant text below): http://lib.bioinfo.pl/auth:Price,LL

Int J Radiat Oncol Biol Phys. 2006 Mar 16; : 16545918
Persistent seroma after intraoperative placement of MammoSite for accelerated partial breast irradiation: Incidence, pathologic anatomy, and contributing factors.
[My paper] Suzanne B Evans , Seth A Kaufman , Lori Lyn Price , Gene Cardarelli , Thomas A Dipetrillo , David E Wazer
PURPOSE: To investigate the incidence of, and possible factors associated with, seroma formation after intraoperative placement of the MammoSite catheter for accelerated partial breast irradiation. METHODS AND MATERIALS: This study evaluated 38 patients who had undergone intraoperative MammoSite catheter placement at lumpectomy or reexcision followed by accelerated partial breast irradiation with 34 Gy in 10 fractions. Data were collected regarding dosimetric parameters, including the volume of tissue enclosed by the 100%, 150%, and 200% isodose shells, dose homogeneity index, and maximal dose at the surface of the applicator. Clinical and treatment-related factors were analyzed, including patient age, patient weight, history of diabetes and smoking, use of reexcision, interval between surgery and radiotherapy, total duration of catheter placement, total excised specimen volume, and presence or absence of postprocedural infection. Seroma was verified by clinical examination, mammography, and/or ultrasonography. Persistent seroma was defined as seroma that was clinically detectable >6 months after radiotherapy completion. RESULTS: After a median follow-up of 17 months, the overall rate of any detectable seroma was 76.3%. Persistent seroma (>6 months) occurred in 26 (68.4%) of 38 patients, of whom 46% experienced at least modest discomfort at some point during follow-up. Of these symptomatic patients, 3 required biopsy or complete cavity excision, revealing squamous metaplasia, foreign body giant cell reaction, fibroblasts, and active collagen deposition. Of the analyzed dosimetric, clinical, and treatment-related variables, only body weight correlated positively with the risk of seroma formation (p = 0.04). Postprocedural infection correlated significantly (p = 0.05) with a reduced risk of seroma formation. Seroma was associated with a suboptimal cosmetic outcome, because excellent scores were achieved in 61.5% of women with seroma compared with 83% without seroma. CONCLUSION: Intraoperative placement of the MammoSite catheter for accelerated partial breast irradiation is associated with a high rate of clinically detectable seroma that adversely affects the cosmetic outcome. The seroma risk was positively associated with body weight and negatively associated with postprocedural infection.

Hello, all. Well the past few weeks ahave been really busy for me. We have moved into our new home and loving it. I was not aware of how stressfull it is staying in someone elses home and caring for their dog and pool could be, but after moving out, I feel such relief. Do miss the dog and pool though. On July 3rd had a D&C. Went really well and hoping the cramping and passing clots will be better now. Now sign of uterine cancer. From the 5th to the 7th, went down to Birmingham to help my daughter pack her things, she is moving home with us on the 21st. I came home on Saturday evening and spent Sunday in bed mostly. I was exhausted. Tuesday I went in for a heart catheter. Procedure went well and no blockages however I do have a slight abnormality where the artery pumps blood into my heart, cardiologist says I've probably always had it. Put me on a new heart medication and increased my blood pressure medication. Yesterday I went straight from hospital, had to stay overnight, to another hospital (they have a tram connecting them), to have an ultrasound of my liver. Onc ordered it because my liver function test showed elavated enzymes (tamoxifen). Have to wait for results on it. Tonight my son is bringing his girlfriend from Delaware here for a few days to meet us. It will be interesting having house guests when I can't lift anything or even dirve for a few days. Guess I'll put him to work.

Anyway enough about me. How are all of you doing? I know school is out and doesn't leave much room for chitchat. Hope you are all well and NED.

Jackie

How's everyone doing?

In a way I suppose that no posts means everyone is busy with life, and things are going along OK?

Hanoria

Hi Hanoria,
I think everyone is busy with the summer activities. I went on vacation to the Jersey shore last week, it was wonderful. My sisters, my brother, their chidren and grandchildren all went, along with my sisters inlaws and families. All together there were about fifty family members. We were spread out between five homes. My son Scott from Virgina was able to come for a few days, my daughter Allison came with her boyfriend from Ct for a few days; the only one who couldn't come was my son Gerard who lives in Atlanta and just bought a condo a few weeks ago. The weather was great, we were all right on the beach. Even though it was hot, you got a breeze through the house from the ocean, it was the best!
I still have been having a lot of rib pain under the left breast where I had the surgery and radiaiton. I went to the radiation oncologist, he said it was not uncommon. Given the physical job I do at work, he says that doesn't help. I reduced my hours down from 12 to 8 a day for the next four weeks, to see if that gives it a chance to rest. Of course I was off for a week, but so far this week along with the vacation, it feels better.
My scar area is also very sore, I guess that's normal. Does anyone else still feel sore there after six months?
Hope all is well with everyone.

Alice





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