Seeking Surgery & Chemo Advice Please

[Tinydancer1]

I've just been diagnosed with invasive ductal cancer which already spread to a lymph node. I'll have surgery (double mastectomy with no reconstruction) in a couple of weeks, followed by chemo and radiation. Because I was treated with andriamycin for soft tissue sarcoma six years ago, my chemo will instead likely be Taxotere/Cytoxan. Any helpful advice for me for the surgical experience? Has anyone had this type of chemo and can share with me their side effects experience? Looking forward to benefiting from and sharing with this community.

[missa13]

Hi Tinydancer1 ! Welcome to the community. I haven't had experience with taxotere/ cytoxan myself, but I remember reading this post from someone else on this community asking the same question.

It's here: healthunlocked.com/share-br...

Best to you!!

[Tinydancer1 in reply to missa13]

Thanks so much! Very helpful advice in that post! Now I find out I'm scheduled for surgery this coming Wednesday. Any surgery advice?

[Chek2idcdcis2x in reply to Tinydancer1]

Hello! I am one week out from a double mastectomy! Getting a camisole with areas to hold drains has been VERY useful!!! My insurance covered it as a prescription was written for it. Also, I found a soft bath pillow to put between my chest and the shoulder strap of my seatbelt. It helped absorb bumps in the road! I have found I can do a lot by pivoting on my knee...to get up from sitting on the floor or to get to the middle of the bed before lowering back onto a stack of pillows. It is hard not to try to use my arms to help position my body, but the lymph surgery site hurts if I try to. Medicine caps were hard to exert pressure onto for the first 4 days. NOT lifting arms above 45 degrees from body is important. Having someone pour liquids into easier to manage containers, for example a mug of milk so I could mix a smoothy vs trying to handle a gallon or half gallon. Button up shirts and full zippered sweatshirts....very helpful for living in this past week, along with sturdy slip on shoes. I have had nausea on and off. Very glad I asked for medication! Anesthesia gave me a patch behind my ear that lasted for three days in addition to whatever I had in my iv (We had a 4 hr drive home over hilly terrain and heavy city traffic). Ask for clarity/hands on training for you and/or whoever will help with your drains. It helps diffuse being intimidated :). Enjoy lots of water. I like mine with lemon. I have had funny fluttery sensations which I think is attributed to liquid and drains. Our bodies and the healing it does is truly amazing! Regular little "meals" whether I felt hungry or not with each antibiotic serving was also very important I found for steady energy/queasiness. I used a protein shake mix with kefir and fresh fruit. If you can, get your hair trimmed and washed before surgery (: and ask someone to come help you wash your hair or take you to get it washed. With drains and lifting limitations, you can't do it yourself. I did at my kitchen sink with the sprayer by tilting my head forward, but in retrospect, it was too taxing. I donated some of my "trim" to Locks of Love! Do not paint your nails a color. My surgery prep called for no polish on toes or fingers! Something else you can ask someone to do for you while you heal! It's helped me to lay back and listen to speakers or encouraging music...I found I'd think I'd not be able to sleep and the steady talking or music fooled me into relaxing and snoozing by not focusing on discomfort (: insight.org and especially anything Joni Erickson Tada! She is a paraplegic who has persevered in life challenges, including breast cancer!!

I had A/C/T for eight rounds every two weeks in 2005 when I was 32, followed by 6 was of radiation. Things have improved since then! I saw you already had a site that helped you! Radiation was super trying on me emotionally. Keep talking to people, and plan something you enjoy for before and/or even a bit after your radiation treatment! I wish I would have done that, to provide perspective. For example, I had been helping tutor adults at the library to read but gave it up for immunity compromise concerns, but I didn't replace it with another similar activity. Maybe your oncology nurse can give you suggestions tailored to where you are!

Thank you for asking for input! Our adventures/stories, unique and similar, can encourage each other along!

[Tinydancer1 in reply to Chek2idcdcis2x]

OMG--You gave me so much helpful information--exactly what I wanted to hear! Thank you so much!😘

[BklynCatwoman]

Hi Tiny, Sorry to hear about your diagnosis...but you are in good company here. If you death with Adriamycin, you will probably find TC much easier to tolerate. (I've heard that Adriamycin is nicknamed "The Red Devil"!) I had TC and while I experienced hair loss and fatigue, the nausea was kept under control with meds (an amazing pill called Emend). I just listened to my body, took it easy as much as I could. (I'm a freelance journalist who mostly works from home.) I had TC for 3 months in the summer of 2013 and am here to tell the tale.

As for the surgery, I had a unilateral (left side). It is definitely sore afterwards. Using your arms will probably be uncomfortable and you'll have to be careful about reaching and raising your arms. The drains are a pain in a butt to deal with but hopefully you won't have them for long. You will be sore and tender. But pain meds, even OTC should keep it in check.

I really found the book "Just Get Me Through This" to be very helpful about all aspects of BC. The writer, Debra Cohen, who is a BC survivor, describes treatment, surgery recovery and the aftermath beautifully, complimented by her oncologist's commentary. amazon.com/Just-Get-Me-Thro...

Good luck!

[Tinydancer1 in reply to BklynCatwoman]

Thanks! Good to hear the nausea won't be as bad. I'll ask about Emend. I was on Compazine and Zofran before. The compazine almost killed me. I appreciate all your help.

[BklynCatwoman in reply to Tinydancer1]

You're very welcome. Everyone reacts differently to different medications. I heard that Emend was expensive--between $700-$1000 for 3 little pills. Luckily, my insurance paid for it but I was being infused with people who weren't covered for it and didn't want to pay out of pocket. (Understandable.) Sorry about the Compazine. I hope you have a much easier time this time around. Keep us posted.

[Sopharies]

Hi tiny dancer.

I had the same cancer as you seven years ago. I had a left mastectomy with no reconstruction, which I had no real problems with. You have drains for a few days then fluid removed until things settle. I still have not had a reconstruction and wear a prosthesis. My only complaint is the bras are very expensive.

I also had Fec-T during chemotherapy. The first four sessions where fine, hair loss being the main side effect. I gained weight from the steroids and have been battling together rid of it ever since!

The last two sessions were definitely the worst but still manageable. I felt nauseous and the hospital lights affected my eyes during treatment.

I hope you get on OK and I will be thinking of you.

Soph

[Tinydancer1 in reply to Sopharies]

Thanks so much! I'm also not looking forward to the weight gain from the steroids and then the hormone-blockers I'll need afterwards.

[Sopharies in reply to Tinydancer1]

I had tamoxifen for a short while with zoladex injections.. Then I had my ovaries removed and was changed to anastrazole

[RonnieDale in reply to Sopharies]

Almost all insurance companies that cover mastectomies are required to cover the other things necessitated by the surgery. Medicare covers a new prosthesis every two years and from four to six bras yearly. Medicare does not cover compression garments or wigs.

Most regular insurance policies cover a new prosthesis every two years, whereas the number of bras covered each year varies. The companies are required to cover the cost of compression sleeves to treat post surgical lymphedema. They will usually cover two garments (one to wear and one to wash) every six months. This also holds true for gloves and gauntlets

If you have reconstruction, it may be necessary to get a "shell" to have it match the other breast. This is a thin silicone prosthesis that is worn over the reconstructed breast to achieve symmetry. Your surgeon may also suggest a mastoplexy (I call it a "Booby Boost") on the natural breast as the reconstructed breast will not sag as you age.

Pocketed mastectomy bras are covered for both reconstructed and natural breasts. Medicare allows about $34 for a bra, of which they pay 80%. If you have a secondary plan such as AARP with Medicare, they will usually pick up almost all of the 20% Medicare does not.

One thing to watch out for is the type of coverage you have. Be sure the facility you go to is either in your network or that you have out-of-network benefits. Also, these items are considered "Durable Medical Equipment", but so are canes, crutches and walkers, etc. Just because a provider in your network carries DME items does not mean that they carry mastectomy products! Make some calls to be sure you won't be unpleasantly surprised.

Hope this helps. The bras really aren't that expensive. Most of the manufacturers have styles as low as $30 - $34 dollars. Check out Amoena, Jodee and TruLife. You might be surprised!

Best of luck,

Ronnie

[Tinydancer1 in reply to RonnieDale]

Thanks for all the helpful info. I'm on Medicare with a supplementary plan, and I found a wonderful mastectomy store in my area with a Victoria's Secret atmosphere! They take care of the Medicare claims and have a huge selection of everything.

[RonnieDale]

I had the AC cocktail 20 years ago followed by the Taxotere and I'm still here! My worst side effects were complete hair loss and terrible neuropathy in my feet. Of course my hair grew back and they were able to give me medication for the neuropathy. I never had radiation.

I'm not sure which meds caused which symptoms, but it's an established and effective protocol. I wish you the best!

Ronnie

[Angeloveme in reply to RonnieDale]

Hi, RonnieDale if you dont mind me asking your experience with AC cocktail? I just started this month with AC cocktail too.

[RonnieDale in reply to Angeloveme]

Hi Ladies,

I had the AC cocktail initially and Taxotere at the end. I'm not sure which meds caused which symptoms, but I had terrible hot flashes, no night sweats though. I also had neuropathy in my feet which pretty much resolved itself after a while. Occasionally I had the sensation there was a tennis ball under my arm, but it rarely happens now (I'm twenty years out.), usually as a result of overusing the arm.

My hair began falling out right after the second AC treatment so, I had my head shaved. I wore a wig to work and found them hot and scratchy. I learned that if I took a paper towel, folded it in quarters and wet it with cold water, I could place it between my head and the wig and it would cool me down for an hour or two. (It also helped with the hot flashes!)

One of the most maddening things was that I couldn't scratch an itch! I had to sort of pound the itch (not hard) to get it to go away. Thank goodness that went away! I would occasionally get nauseous, but found that vanilla mints (available at most health food stores, helped.

I hope this info will be helpful. As before, I highly recommend joining a support group. The information we share here can be shared among new friends, everything is confidential. The right group can be very uplifting.

Best of luck to all!

Ronnie

[Tinydancer1]

Thanks again, Ronnie.

[Tinydancer1]

Well, surgery was on Wednesday, and it was outpatient! The 5-hour surgery (one side simple mastectomy and the other side modified radical, with no reconstruction) started at 2:00 pm and I stayed in post-op overnight, discharged by 10:30 am. I'm surprised that I was feeling quite well as soon as it was over. I was given no antibiotics, no instructions on limitations of arm movements (the doctor said I should move according to how much I can tolerate), and I have 3 drains that are coming along very nicely (less and less fluid each day). I managed the non-pain (some achiness) the next day with 2 extra-strength Tylenol every 6 hours, and one Advil the morning after that, even though I didn't feel I needed it. And that was it for "pain." The doctor said I can shower even with the drains in; the discharge nurse said I must wait until the drains are out. I decided to wait on taking a shower until I stop oozing from one of the drain sites. It's so strange how we each get different post-op instructions! I did, however, find a great American Cancer Society web page that provides post-op exercises to avoid lymphedema and to get back full flexibility and I'm following those instructions. It's at cancer.org/cancer/breast-ca...

Thanks again to all who responded with advice to my query.

[PJBinMI]

Congratulations on getting thru the surgery so well! That is wonderful.