New questions as things move forward

[IrvineFriend]

Hi all,

I'm now fully engaged in this BC deal and doing well. It's been a 1.5 months post-bilateral, still waiting to start chemo and for my last drain to be removed (to start chemo) as I'm a heavy fluid producer and now that I'm out and about, walking, hiking, working full-time and doing well until chemo starts, simple stupid basic everyday life questions are arising:

1) Because of my breast pain and still having the drain, I'm wearing a front opening post-mastectomy bra for ease and comfort (the girdle bra keeps anything from "moving" around and causing any discomfort). When does one start wearing a "regular" bra during expansion? I'm definitely an "A" right now but expect to be a "B" within a month. Should I just buy regular bras if/when the pain is gone since I'm not uncomfortable w/o any prothetics? So can I go to any store?

2) How often/quantity were you being expanded? My sister was expanded with 100 cc every 3-weeks. I'm being expanded 60 cc every week. My pain level has decreased (so maybe the wrinkle is being expanded) so I'm OK with it. How can an "A" cup feel like bowling balls? That's a separate question which I don't expect answers to.

3) My oncologist said since I'm stage III, unless I don't have symptoms, there will not be any ongoing/periodic PET/CT scans. I had a total of 15.6 cm of cancer in my breast and 4 nodes had macrometastasis. Seems like this is pretty high risk and I'm not confident, especially with the delay in chemo/treatment, I'm never going to have to deal with this again. Those with Stage III, did you ever have a PET/CT scan w/o symptoms? Seems this cancer loves to overstay it's welcome and I'm not willing to have this unwelcome visitor in my home/body. Seems common once you've gone to stage IV but I want to know when it's earlier like stage IIIa.

4) I come from a long line of BC and have seen their "jobs". I didn't like my sisters because they seem "off to the side". I'm noticing that as I'm being inflated, I have a lot of "breast" close to and slightly under my armpits and not much in the middle for cleavage like my sisters. Has this been your experience? Will the real implants look differently? My docs will tell me one thing, I want to know real experience.

5) My boyfriend is awesome and so supportive. How has your partner found support? I know he feels "lost".

6) I told myself I would never let him see me until reconstruction was done. Unfortunately I had a situation where I needed immediate help (I thought I pulled a drain tube out and did) and he had a full frontal view. He now wants to take a photo chronology of my growth. I know this is so individual, but do you ever feel totally comfortable? PM me if you don't want to post as this is so personal. BTW, the relationship started as a friendship that turned when I was diagnosed and he disclosed his true feelings and his commitment to supporting me. How great, my best friend becoming my Significant Other. Another little gift of this disease.

7) I work in a smaller company but at a high level and so many of the younger woman openly ask me questions about everything. I mean everything. I feel my relaying my experience is expanding awareness and I answer all their questions w/o reservation. But I also feel comfortable that my job is secure. I'll be wearing scarves soon hopefully and I can continue being comfortable with this phase of my life. I guess this isn't a question. I just wanted to relay that being open about my cancer and it's affect (like being an "A" and feeling like I have a bowling ball on my chest) will encourage all woman to support breast cancer. They don't know what it's like and really want to know and to help. I hope we can all talk openly to our younger generation about this so it's not so scary. Even some of the scientist men ask me about my recovery and I feel that sharing does nothing but increase awareness.

8) I'm in So. CA and would love to do any/all of the BC walks/runs. If anyone has actually read through ALL this and is in the area, I'd love to meet and do the events together. They are typically in Nov. the month before BC awareness month. I should be through chemo by then!

Thank you for this site and I will be sending our founder a card in the next couple days. It truly has kept me from going crazy.

[jaykay]

Hi,

I can give my 2 cents on 1,2 and 4.

1) I've been wearing "Coobie" bras since my bmx with tissue expanders. They are one size fits all, less restrictive than a sports bra and more comfortable than a regular bra. There are 2 for 1 coupons at retailmenot.com. Just google coobie. You may want to check with your ps to make sure he/she doesn't have a preference. I won't get the permanent implants put in until after chemo/rads/healing from rads.

2) I was expanded 60 cc each week. But my TE's were dual ported, so the "top" half was expanded to 150cc during surgery and the "bottom" half was expanded at the doc's office. My final was about 320cc's - for me, a C cup, which is what I was before. Bowling balls is EXACTLY how I describe them! Did you have Alloderm as well? That also contributes to the hardness.

4) Yes, I have underarm boobs as well - never did before. My ps assures me that when the permanent implants go in, it will look way more natural. And feel more natural. Regarding cleavage - that would be a bonus for me :-). But the ps said I had nice separation.

Hope this helps, yes, this is a great site with wonderful people

Best,

Janis

[JillaryJill]

Hi,
You can see my path is similar to yours from my signature...Stage IIIc, double mastectomy.
The tissue expanders feel terrible...no nice way to say it. They are hard as rocks...I hated every minute of having those expanders being part of my body. I did not wear a bra at all during my expansion, reconstruction, I wore camisole's without the bra support in them. I have not worn a bra since my ordeal. I never went back for nipple surgery and my reconstructed breasts are high and firm (no jiggle) about a B cup size. I don't need a bra. My onc, radiation onc, and plastic surgeon all say what a terrific result I have from reconstruction but I do not think they look natural at all. The side where they removed lymph nodes has some lumpiness under my arm. I swim for fitness and I used to be the type that would disrobe in the locker room, no matter who was watching, now I am in the changing room...very shy about how altered my body is.
In terms of scans etc. for Stage III, my Dr. waits to conduct scans when you report symptoms. The science behind this she says is, too many false positives, danger to your body from the radiation from the tests themselves, not a big clinical difference between catching Stage IV early or when a patient reports symptoms. This is difficult mentally...I am often anxious about what is lurking in my body..will I reoccur?
In terms of talking to younger women, I found they are curious...and scared they might get BC as well. I feel if you can share some knowledge with them that you have learned from your experience you may help one person catch BC early. I have dense breasts and all of mammograms have a disclaimer saying due to patient having dense breasts, certain lesions might not be detected. I like to tell young women to know what breast type they have...and seek out alternatives to mammograms if they can...my confidence is mammograms is greatly reduced.
Good luck with chemo...it's all doable. Also, have fun with your wig. All my brothers, nephews, and my male coworkers and friends tried my wig on. I have a photo gallery of everyone with my wig one....it was fun to see people laugh at themselves with my wig on...and guess what they forgot I was bald and did not even look at my bald head!

[evergreen]

My doctor also does not do anything beside blood tests (not markers) and physical exams, at my check-ups. When I finished my year of herceptin, I had a few tests done, and all were OK. But that will be it, unless I experience symptoms. Same reason as above - no evidence that the additional stress of waiting for results, the test-associated risks, and, I am sure, the costs, etc., make it worth it. And I sort of agree. When I went for my last check-up, I hated even walking into the hospital.....
Note I was 3a as well.

[starwishn2]

Hi Irvine - I had my reconstructive surgery this past Friday. The expanders are GONE!! YAY... those bowling balls/elephant feet that have been planted on my chest are GONE! I now, with the reconstructive surgery, have some cleavage that I didn't have with the expanders and my "breasts" are no longer into my armpits. I have an excellent plastic surgeon. I researched and spoke with as many patients of reconstructive surgery as I could before I made my decision on who to go with. I don't look like I did before my mastectomy but I do look more natural than with the expanders. I plan on being "pleased" when all is done. And yes, I did feel those expanders EVERY day....

best of luck~
Jeri

[linn65]

My doctor said no scans until 6 months after rads are done. He said even if I did a scan most likely it would be so small they wouldn't be able to see it now. I thought wow they did every test in the book before TCH, surgery and now on rads for 5 more weeks. Then in 6 mos start reconstruction and herceptin rest of year. It's weird to me to do tests before but no tests after TCH and rads are over......and then wait 6 mos.

[snolan]

My expanders sat high not out to the sides, it differes I guess for everyone. My PS put in 60 cc for each expansion I went from a A to B cup too. The expander feel a lot harder then the silicon will. The silicon is soft and squishy, I think I play with them more then my husband The skin I had radiation on does effect the shape, my outer side is a little flatter compaired to the other side. But unless you are taking a hard look at them you wouldn't notice.

I too have been very open with my experience when asked I feel if I can educate people if they end up having to go through this maybe I will have helped them. I did end up with 2 friends who where dx after me and I helped them a lot with my experience.

My husband did struggle at times the best thing is to keep your line of communication open. You both need to express how you are feeling as your emotions will be up and down through this whole experience. It is good your partner is willing to support you, it is so important to have someone by your side, let him help.

I started wear a bra right after reconstruction PS even mentioned that I could, the incision are across the middle so the elastic bands of the bra won't rub on anything.

Good luck with chemo, embrace the baldness, it is a sign of strength and courage.
Suzanne