Questions. Too many questions & feeling pressured to commit

FelineMum · June 2017

Hello,

I was diagnosed TN Stage IIIa, locally advanced on February 28th of this year after finding a lump on New Year's Day. I have one cycle left of Chemo (Carboplatin & Taxotere). I've had five 3-week-long cycles so far. Plz forgive me if I screw up terms and such.

I'm scheduled for a double mastectomy with reconstruction during, then radiation after my expanders are at their desired size. My surgery date is up in the air due to my surg onc's and plastic surgeon's conflicting vacation plans, among other reasons. I've repeatedly asked for more information on radiation, only to be told nothing will really be known until after my surgery and then that will be up to the radiation therapist.

1) Is radiation always the best course of treatment for TN? I've had full response to Chemo. My tumor is undetectable in a manual exam. After my breast biopsy, the tumor became inflamed and was visibly pushing against my skin and half my breast had the orange peel appearance.

2) Is doing radiation on new reconstruction safe? Sane? The plastic surgeon said there's a 15-20% chance of radiation damaging the reconstruction to the point of a botched boob or complete removal of reconstruction with no way to redo it. When I asked why not wait to reconstruct until after radiation, his answer was this method *hopefully* takes less time and *most* women are satisfied with it. I'm 42 and want reconstruction. I've thought about it, read about the pros and cons, had a debate with a relative who's anti-reconstruction - I don't want what feels like a cavalier attitude taking away one of the few choices I have.

3) My tumor size is approximately 7 cm (mm?) and one lymph node appears to be involved. My tumor and breast tissue density are very similar, which has made getting concrete information challenging. I had two lymph nodes biopsied. One was positive; the other wasn't. "Ghost node" was negative on my PET scan but my breast MRI suggested it's also positive.

4) Due to the vacay schedules, I need to commit to a surgery date. I've been offered a spot at a retreat that I need more than I have words for, but my surg onc won't push back my surgery date by more than 4 days. Previously, she had my surgery scheduled for 11 days after my last Chemo infusion. I'd already requested a date change before the retreat entered the picture. She says the closer to Chemo, the better. I've never had major surgery before. I'm scared. Confused. Exhausted. And feel like my concerns are trivial to my medical team.

Advice?

MinusTwo · June 2017

Radiation is not always required, but it will depend on your total work up after surgery. What I've usually seen with expanders before radiation is just minimal fills to hold the place. Then after your skin has healed from rads, the PS continues to fill to the desired size.

carmstr835 · June 2017

I opted for bilateral mastectomies because I did not want radiation. I also wanted immediate reconstruction, but the MRI suggested I had lymph node involvement, and that nixed the reconstruction and requires me to have 6 weeks of radiation. My lymph nodes were extra-nodal extension and might be the reason I have to have radiation, not sure, it seemed to me the radiology oncologist was more concerned about the tumor placement close to the center of my chest and he wanted to radiate the internal lymph nodes they could not remove during surgery with the dissection. I can re-evaluation the possibility of reconstruction 4-6 months after my radiation is completed. I feel bad for you, I know how much I wanted to be whole immediately after surgery, but without the reconstruction immediately, you do heal faster initially. I am sorry you are having to deal with this.

SpecialK · June 2017

I am not TN, rather I am TP, but also had 6 infusions of TC (with H) after BMX with expanders placed. I did have positive nodes, but did not have rads because I had complete axillary clearance surgery (ALND) prior to chemo. I did have some of the same skin healing issues that rads patients do experience however, because I had necrotic skin post-BMX, and did lose my left expander prior to chemo. I answered this post because I have had a lot of surgery and complications involved with recon, both before and after chemo, and wanted to respond to some of your questions.

One of the reasons radiation is used for TN patients is because anti-hormonal therapy is not available to help provide longer term protection after chemo and surgery are done. The purpose of radiation is to help clear the breast area and axilla post-surgery and prevent local recurrence, and potentially distant recurrence, by killing any errant cells left behind before they have a chance to travel and set up shop elsewhere. That is why there is usually a timeline to start radiation post-surgically. Neoadjuvent chemo can cause some trouble with the radiation timeline if reconstruction is desired. The dilemma is this - hurry with expansion and risk damage by radiating the new recon, or wait and risk damaging the skin and muscle and then not being able to reconstruct with implant based recon due to that damage. Is rads being offered for the positive nodes, the tumor size or location too close to skin or chest wall, or all of those things, or is being offered as another treatment modality because you are TN? What was the size of your positive lymph node? This might dictate what type of rads is needed, specifically to the axilla and/or whole breast, and you can also ask about a shorter course of rads (Canadian Protocol), or a different radiation approach customized to your personal situation.

Radiation on reconstruction does come with risk. You may experience tightening of the skin around the implant, or the reconstructed side may sit higher on the chest. Ask both your PS and RO to delineate their experience with how many patients they have who have experienced this type of complication, and how it was handled. One of the ways some plastic surgeons mitigate this is to expand the side to be radiated slightly more to account for the potential shrinkage, so you have a better shot at evenness. Some overfill the expanders, then drain them for the duration of rads, then refill. The problem with waiting to try to expand after radiation is that the skin is less likely to stretch - thus the previous approaches. The failure rate is higher for implant based recon initiated after rads without stretching the skin beforehand - about 50%. So that figure is higher than the complication rate quoted by your PS when expanding prior to rads. If you decide to wait until after rads to attempt recon most PS will wait a minimum of 6 months before attempting, but I would add that post-rads implant recon success has increased with doing some fat grafting to the radiated skin prior to starting expansion and this has helped the skin to stretch and have better vascularity. I had several of these procedures over the course of a year, while having no expander or implant in place, and it made the difference in being able to proceed later with a successful recon on that side. Your recon timeline would be lengthened by fat grafting, and in general by doing post-rad recon, because of the need to let the skin/muscle heal - this is what your PS alluded to in terms of taking less time.

I am very leery about surgery this big only 11 days post-chemo, that is pretty quick. What are your blood counts? If your WBC is low you are more susceptible to infection - and potentially losing your expanders/recon due to that, and if your RBC and hemoglobin are low you may struggle with the aftereffects of surgery more. I would suggest you look at the surgery dates in sig lines of patients on this site who had neoadjuvent chemo. I think you will find they waited more than 11 days in most cases. I have a good TN friend, she was 35 at the time of treatment and BRCA1+, with a 3cm tumor, and she had about a month between last chemo and BMX with recon. She did not have rads as she had no pos nodes and a good clear margin around her tumor.

Wishing you the best, and if anything I have said prompts additional questions - ask away.

FelineMum · June 2017

Thanks for your reply.

Actually, I'd rather wait for reconstruction. And not rush into the mastectomy before my body has had time to recover from Chemo. I want a healthy body. I don't want to subject myself to extra procedures - and it sounds like radiation botching reconstruction would definitely be more surgery with the chance of No reconstruction or a misshapen implant. In doctor-speak, "less than ideal results."

Does that make sense? I'd rather have surgery because that's the plan (example: delaying reconstruction) than as a reaction to a new problem.

The retreat I mentioned is the 3rd week of August. My mastectomy keeps getting bumped from July 28th to the second week of August. My oncologist actually works with the group doing the retreat and thinks it would be valuable for me. I just don't see how I possibly can be healed enough to take part within three weeks (or 1 week) of major surgery and starting radiation. I know my oncologist wants radiation due to my tumor being large, my Stage III status and the lymph node involvement - that even without positive nodes, she favors it.

She feels that because my (blood work) levels have been stable throughout Chemo and my side effects moderate, I'll make a quick recovery. But throw in reconstruction (like you said) and ... it's simply overwhelming right now. I've had so few chances to do something for myself in recent years and I feel the need to connect to other women with breast cancer - the point of the retreat. I have no family history, zero genetic mutations, my profile doesn't fit TNBC ....

FelineMum · June 2017

Thank you for your reply. You certainly seem to know what you're talking about. I copied my MRI results below:

Extensive abnormal asymmetric enhancement is seen in the central portion of the left breast, extending from the inverted left nipple, posteriorly approximately 7.5 cm. Within this abnormal enhancement, is a relatively more discrete and rounded mass in the central, middle third of the breast measuring 2.5 x 2.5 cm and containing low signal areas, likely related to artifact from the clips. There is in埛�ltrative type enhancement superior and anterior to the above described mass, measuring 5.0 x 5.0 cm and contiguous with the above described mass. A bandlike area of enhancement extends from the mass to the nipple proper. Additionally, there is generalized skin thickening and enhancement, most pronounced involving the areolar and periareolar region on the lateral aspect of the breast. The biopsy-proven metastatic lymph node in left eczema, demonstrated on recent ultrasound, as identified on MRI and measures 3.0 x 2.4 cm. Artifact from a biopsy clip is seen within the node. An additional mildly prominent lymph node is seen slightly superior to the dominant node, measuring approximately 16 x 8 mm.

The surgery timing crunch is my surg onc is out of the office for most of July and the PS is gone for the first 10 days of August. The surg onc prefers this PS and there may be insurance coverage issues as well. Insurance is most of today's fun so far.

MinusTwo · June 2017

Remember ladies, you don't know what the final path report will look like after surgery. I did not have a pCR from neo-adjucant chemo to I had to do a different batch of chemo after surgery - and before rads.

The good news for me - because this was a recurrence I had already had my implants in place for 2 years. My BS was soooooo good, she was able to do an ALND and carve around the implant w/o breaking into the capsule. The PS was doom & gloom. The amazing woman BS was willing to try. Hooray. The after effects of radiation make that side higher & tighter, but no other problems.

Sam0623 · June 2017

I agree with the other poster, 11 days after your last chemo does seem a little quick. I went to 2 surgeon's to get opinions and one likes to wait 3 weeks, the other likes to wait 5 after your last chemo treatment. The main reason for this, as the other poster said is to allow your body to have a little break and allow your blood cells to get back in normal ranges.

I am in a similar situation regarding radiation. I won't know for sure until after surgery, but the way it was explained to me is if my original tumor was bigger than 5 cm, or if they find any lymph nodes with cancer in them, then radiation will be recommended. I think you enter a gray area if you meet that criteria but have a PCR.

Regarding the impact to your reconstruction, I also went to 2 Plastic Surgeons. One didn't seem too concerned about radiation damaging the reconstruction. He just said they would delay my implants for about 6 months to allow the skin to heal (So I would be left with tissue expanders for longer). The other PS said the same thing, but if there was damage he would have to use tissue from my back to repair it, however he also said if I delayed the reconstruction completely until after radiation he would have to use the back tissue, so he recommends placing the TEs immediately , allow patients to have the radiation and take the chance you may not have any issues and need the back tissue for repair.

I hope that makes sense. I know waiting for final pathology after surgery is the worse! I still have 6 weekly treatments left, and my tumor has been gone for 2 months so my doctors and I are optimistic, but it all depends on that final pathology!

FelineMum · June 2017

Between questions you helped me with here and a long phone call yesterday with my BS's main nurse, the plan is this: Surgery 17 days after my last Chemo. It's nearly a week more time than the original date. My BS says that while she prefers to wait 3 weeks (for reasons also mentioned above) and that she would wait until late August if I wanted, waiting wouldn't be her first choice. She also wants me to go to this retreat (she's been involved in previous years) and thinks I would benefit from it.

My nurse emphasized my consistently good levels of WBC, hemoglobin, platelets, etc. I'm grateful to be using Neulasta OnBody.

I understand that many things are at best theoretical until my surgery. I hope my BS gets to remove the dead tumor she's hoping to find - a major reason to operate sooner than later. As for radiation and expanders, my PS thinks my reconstruction should be straight forward. I (ahem) have large, saggy breasts so there's plenty of skin and tissue to work with. He'll try to fill the expanders to the desired size for the permanent implants, but will let fluid out if it's interfering or causing complications. I don't want large breasts. And the permanent implants could be up to a year away. The PS said he prefers to let the breast tissue heal as much as possible.

Things that baffle me about BC: When did 41 (age of diagnosis) become young? How did a obese gal on SSD become "otherwise healthy, all things considered?"

I also never guessed that never smoking would make such a huge difference in my life. It helps puts me in the "no known risk factors" category while also putting me in ones such as "likely to heal quickly."

I'd apologize for getting asking so many questions here when apparently most of the answers were nearby, but I wouldn't have known what questions to ask other people. Thank you for your help! And please feel free to keep telling me your stories and giving input.

Questions. Too many questions & feeling pressured to commit

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