Just finished chemo, now onto my mastectomy. feeling scared...

livinthedreamincali

Hello to all my 'sisters' out there who are sharing this journey with me. I never posted or read posts while undergoing chemo because I wasn't sure I knew what to say and I was afraid of what I might read honestly. I didn't want to get things in my head & imagine worse side effects than I was actually experiencing. I focused on staying positive & appreciating my amazing oncology nurses & support from family & friends. I'm really hoping I never have to give myself aanother shot in my stomach ever again, but in the end, even that became mundane. So now I'm finished with my 5 month course (Adriamiacin & Taxol) and I'm bald, fatigued & a bit worse for wear, but I did it.

10 pounds lost is the only positive outcome from my experience in chemo - besides of course the fact that it shrunk my cancer which has spread to my lymph nodes & through my chest wall & was originally considered inoperable. Now onto the next hurdle:

The modified radical mastectomy coming up next month is keeping me awake at night & causing real anxiety for me. They are having to remove so much tissue that I'm needing skin grafting from my thigh to replace the tissue they will need to cut away. Has anyone out there gone through a similar surgery and can possibly offer some advice moving forward? I like my surgeons & know this must be done, but emotionally & physically it just seems so overwhelming to me.

Thanks in advance to your reply & best wishes to you all,

Heather

LMN

Hello Heather!

I was scared about surgery too. I did not get the grafting but was worried about my operation. I ended up going to Houston and having my surgery at MD Anderson. In my case the surgery was not too bad and I started feeling better afterwards. Where are you being treated? My chemo was not very effective so I ended up consulting with the IBC clinic at MD Anderson. I live in NM and after the consult came back and tried a different chemo and then seemed to get a little worse so went back to Houston for the surgery. Right now I am halfway through radiation here in NM. When is your surgery

LMN

Heather,

I hope you are sleeping better and feeling more comfortable about your upcoming surgery. Be sure to have some soft comfortable tops that you don't have to pull over your hea

LMN

heather, how was your surgery? I was told about the possibility of grafting but ended up with clear margins without needing the plastic surgeon who was near by during my surgery. I am now super flat on my right side but everyone has complimented the incision (including the surgeon saying he did an "excellent" job lol). I also felt better after the surgery and hope you do too

trudy-erl

For me the surgery was a cake-walk as I suffered so badly from the Taxotere chemo. A lot of muscle will be cut, so that keeps the pain away. I had my surgery at noon and was able to leave early the following morning. You're over the worst, now get rid of the anxiety...which I had so much of for basically nothing. We are each different but I found the surgery to be the easiest of my 1-year treatment. Good Luck...as a rule of thumb we all make it much worse than it is in reality.

JoE777

asking for a friend who has IBC Her2+. In chemo, MRI was good ,chemo did its job, no evidence of cancer cells so she doesn't want the mastectomy her doctors recommended . I can't find any instances where patients didn't have to have the mastectomy as standard care. Can anyone address this

ADDK

JoE777, I don´t have IBC, I´m only HER2+. Neoadjuvant treatment followed by either mastectomy or lumpectomy is the standard care for HER2+ BC. The purpose of the treatment is downsizing and downstaging the cancer prior to surgery meaning that surgery is part of the packet. Your friend had a complete pathological response to the treatment, which is very good because it lessens her chance of recurrence. This does not, however, mean that the cancer is gone - there can still be cancer cells in her breast. This is why she should have surgery, too. HER2+ is an aggressive cancer, and combined with IBC it is even more aggressive. Loosing a breast is hard, but in my opinion it is nothing compared to becoming metastatic. I think you friend should definitely follow the recommendation of her doctors. I wish you and her all the best.

JoE777

ADDK, thank you so much for your response. I spoke with her for a couple of hours via text because she is so upset she can't talk and I am heart broken at her slice of life. This is an amazing thread- to think someone in Texas can communicate with someone in Denmark about a friend in Maryland

LoriCA

Jo sorry I just saw your post. What stage is she, 3 or IV? With IBC they should have done a full set of scans to determine staging because it progresses to Stage IV so quickly. I'm HER2+ Stage IV de novo with IBC. Two things I'll mention:

When I had a full-blown recurrence last year (despite the rest of me responding well to Herceptin) it did NOT show on an MRI which delayed my treatment change by months and caused me considerable distress. IBC is very difficult to detect on an MRI, not impossible, but because it grows in layers the evidence of IBC on an MRI is typically only skin thickening and requires a very skilled technician who is familiar with IBC reading the scan (the way it grows is why it is usually can't be detected on a mammogram either). The only reliable scan for me has been a PET/CT, although it seems it's also visible on the CT scans my radiology team has been taking every few weeks because they know what to look for. I have absolutely zero faith in MRIs to detect IBC.

I was Stage IV de novo and my doctors said that surgery would cause me more harm than good, even after we shrank the cancer and I asked again. Surgery and radiation is considered standard after chemo for IBC at Stage 3, but at Stage IV there are many different factors that come into play. The extent of skin involvement is a big one, and in my case the extent of my mets and the fact that it's entangled in my brachial nerves. If she's still Stage 3 I would strongly urge her to have the surgery, especially if it's Grade 3 with a high Ki67 which IBC usually is. IBC is super aggressive, sneaky and stubborn, and can spread lightning fast. It often becomes chemo-resistant quickly and is often radiation-resistant. She should throw everything she can at it now if she's still Stage 3. If she doesn't have the surgery and it comes back, she could be in for one hell of a fight.