HER2 3+Pos.CA/Lymph/Avalanche crisis

[julia2]

I am so grateful to have found this forum; I read so many of you ladies’ posts. I
am deeply touched by your fears, your feelings, and the encouragement from other women.
May all of you be blessed in your journey ahead.

I am going through a lot also; and avalanche of crises which converged at the same time; I am reeling with uncertainty and trepidation, pls forgive me if I just blurt it out.

I am a single 59 year old woman with no social /family/friend support, (Small family and most have passed on as well as friends ) I live in a bachelor cottage attached to my landlord’s house with my 3 beloved emotional support cats. I used to be financially independent my entire life and the past couple of years, due to not being able to stand upright for longer than 15 minutes at a time nor sit for long periods; I became unemployed. The reason for this was later diagnosed with CT scan. During this period, I was so grateful to have received financial support from a “friend” of mine which came to a sudden halt on 20 July 2026 as I had become a financial burden for her. Other “friends” disappeared like mist in the sun.

While I had financial support, I joined a private medical aid end of last year, shortly after I became aware of a lump in my breast / accompanied by suddenness of inverted nipple. I had to wait for 3 month exclusion period to pass before I could go for a mammogram for the first time in my life.

The results were not great. I was diagnosed with aggressive HER2 3+ positive breast cancer and cancer in maxillary lymph node after a Core Needle breast biopsy. It was not just one lump as I thought, but 9 in total with the largest one, (which was the one I felt but it was smaller at the time) but, by the time I had a mammogram the largest lump had grown to 4.2 cm. Immediately after my mammogram results, the Pvt medical aid refused to per-authorise ongoing treatments which were to follow and put me through a non-disclosure investigation having been on the medical aid only for 7 months. They felt that stating that I wanted to go for a mammogram on my application was not sufficient and I should have stated that I had an inverted nipple. Seeing that I was half way through my diagnosis, while the investigation was underway I took out micro loans to pay for Breast Biopsy, Histology reports, General Surgeon, Pathology tests, which I had hoped to claim back from medical aid. Long story short, the pvt medical aid terminated my membership on 30 July 2026. At the same time my “friend” stopped financially supporting me on 24 July 2026. It was unexpected and sudden. Not being employed with no savings and mounting debt, I am reeling from an matters beyond my control.

I was forced to transition from Pvt care to state care with haste. To get into the state hospital system, I had to wait hours at town clinic as there were dozens of people trying to see the doctor; many hours later, I Got an appointment for sonar scan at local state hospital 2 weeks later, but the local state hospital in our town, does not have oncology dept. and a CT scan was booked at provincial hospital on 24 August 2026 which is 1.15 hour away from our town. The As I do not have a car, I had to be booked on a patient shuttle which you have to be at local hospital at 6:30 am, then wait until the last patient has been seen to at provincial hospital then the long drive back; after a very long day and waiting in never ending queues at hospital. After CT scan the Intern Doctor advised me that I will need 8 sessions of chemotherapy with 3 week intervals and mastectomy with underarm lymph node removal. Furthermore the CT scan confirmed that I have a degenerative spine with curvature in the centre of my spine and barely any cartilage between L5-S1 which explains the extreme pain I have in my spine and not being able to stand or sit for extended periods. After a very long day at provincial hospital, all the patients were finally dropped off again at local state hospital at 18:30 pm with an appointment which was scheduled with oncology team on 8 Sept 2026, which the intern doctor canceled in the interim and will let me know of a new date when oncology team can meet to discuss my treatment ahead.

With no recurring income and not being able to work and no other source of income, I have spiralled in a pit of depression which was escalated by my landlord who informed on 1 September 2026 that I need to vacate my bachelor cottage as of end of September, seeing that I had no rent money to give him for the first time in over 2 years. After having been a punctual tenant who always paid rent on time on the 25^th of each month. How do I manage my near future? The cruelty of the people has all but devastated me.

I have always prided myself in paying my accounts punctually and in full; but with this unexpected financial crisis, now I am also being hounded by debt collectors for the medical bills I needed money for.
My entire world of health, no home, financial insolvency, food security shortage has crashed around me.
I have never been homeless and I’ve never not had an income; I used to be so independent. I am truly terrified of what comes next, besides the fact that I just cannot see myself in a packed patient shuttle for an hour and 15 minutes between towns to have chemo therapy or being in a packed patient shuttle after a mastectomy…not that I have a home to return to after 30 September.
I do not know what I am going to do and I refuse to put my fur babies in a shelter. They are an integral part of my life and household and have flown with me where ever I travelled to. I
As for housing; I have reached out to all human settlements and subsidized housing and all the responses came back negative with years long waiting list.
It feels like I am spinning into a vortex of darkness…Tears have filled rivers with despair. I am not coping at all.

2026-09-05T22:00:00Z

@pumpkin1317

I just wanted to share my experience so far in case it will help anyone else out there going through the same thing. I was diagnosed with high grade DCIS with cancerization of the lobules in April. I had a lumpectomy with 2 re-excisions that still had positive margins in May and June. I didn’t feel that another re-excision would be successful as the second one showed more DCIS than the previous re-excision. Next step, mastectomy with reconstruction. My local hospital had limited options for reconstruction. I preferred autologous and immediate reconstruction, but my only options locally were mastectomy with skin expander followed by delayed DIEP reconstruction or implants.
I had one plastic surgeon tell me he would do an implant under the muscle, and he thought DIEP was overkill. The other plastic surgeon gave me both options but couldn’t do DIEP at the local hospital and I would have to go to a different hospital after the mastectomy with skin expander was completed and healed.

I then decided to get a second opinion at a university hospital about an hour away. The second opinion included full review of imaging and pathology before scheduling the appointment. It was really hard to wait that long but finally got an appointment. Diagnosis was confirmed and the breast surgeon and plastic surgeon felt I was a good candidate for immediate DIEP reconstruction after skin and nipple sparing mastectomy due to only finding DCIS in previous surgeries with small areas of positive margins. It was willing to take the risk of potentially requiring radiation if any invasive cancer was found or if margins were still unclear after mastectomy.

Next step- surgery took place July 24. A nerve block was done to help with the mastectomy pain and a catheter was placed after I was under anesthesia. The first day of recovery was a blur. I woke up with a surgical bra and abdominal binder and in a beach chair position. I had a drain in my breast and two drains in my abdomen. The plastic surgery residents and medical students came in every hour to check the skin flap and do a doppler pen to check the artery in the breast. This was a little stressful because they had a heck of a time finding it each time and I worried I’d have to go back to the OR but all was well. The nurses took care of emptying the drains. Pain meds were tylenol and a muscle relaxer alternated with toradol injected in my IV ( that one burned!). They informed me that I could have oxycodone if I asked for it, which I did. Everyone is different, some don’t need that extra pain medication, but others do. I think if I could have iced the surgical areas, I wouldn’t have needed stronger pain meds, but you can’t so I did take them as needed.

Most of day 2 was watching Lord of the Rings and DC comics movies in between frequent naps and hourly checks again. The catheter came out and then I was able to go for a short walk with the physical therapist and occupational therapist. I was allowed to sit in a reclining chair and use the bathroom. Thankfully I didn’t have any dietary restrictions and my husband brought me one of my favorite comfort foods for dinner, grilled cheese with tomato and fresh baked cookies. Meds were the same and checks dropped to every 2 hours early evening.

I was discharged on day 3 and went home. I took my first shower and had a good look at my breast and incisions. The skin flap island was positioned at the bottom of my breast and was much larger than I expected, it was very disconcerting to see. Because of the swelling, my belly button was/is still off center and higher. The drains were a bit scary at first, making sure I cleaned with a fresh washcloth around each drain , and then stripping the tubing. The nurse made it look so easy and could strip the tubing in one motion, definitely not something I was able to do. I put gauze under each tube and then over it to keep it clean.

Putting on clothes…I have to admit I gave up on trying to wear underwear or pants the first few days because of where the drains were inserted. I had purchased two robes with drain pockets and wore those. I then started wearing the lounge pants and shorts I purchased at goodwill along with the mastectomy hoodie several days later. With the extra fluid retained, I needed 2 sizes larger than what I normally wear, so they experts were correct about that part.

After 2 days home I was allowed to ditch the uncomfortable surgical bra and wore a more comfortable front closure bra. Padding with gauze was a must for me for comfort. I also started wearing a soft cotton tank under the abdominal binder. That helped with the itching. The binder also rides up now and then and puts some pressure on my breast incisions and drains. I had to undo the top strap of the binder when trying to sleep.

Sleeping was good for the first week. I had purchased a power lift recliner that helped tremendously. However, one of the wires broke somehow about 5 days after I got home. My bed was too high to get into easily and I ended up in my husband’s manual recliner. We had to put several pillows in it to prop me up because I was too short, and then he had to put me in the reclined position, prop pillows under my legs, and cover me with blankets and make sure I had my meds and a drink. Once I was in that recliner, I couldn’t get out without help. I tried a few other locations without much luck getting comfortable. After the breast drain and one of the abdominal drains came out, I can now get in my bed. I’m still not able to get a full nights sleep all in a row though, I tend to sleep 4-5 hours and then am able to get back to sleep for a few more hours after taking another dose of tylenol or ibuprofen.

A few other random items:

A claw reach device is very helpful though it was hard to pick up remotes and cell phones which I dropped all the time!

A pill organizer was helpful. I was so tired, I couldn’t remember which medication I took last or if I slept through it. I was alternating ibuprofen and Tylenol plus the muscle relaxer and stool softener. I did have oxycodone for breakthrough pain. I needed that once a day and mostly only if I slept through a dose of the other meds.

In my experience , the pain comes and goes for whatever reason. The abdomen area hurt more at first, and now the pain is worst in my breast near the center of my chest where they removed some of my rib cartilage.

There was some confusion about when drains can come out. My ERAS (Enhanced recovery after surgery) book said <30 ml per drain per 24 hours, but my plastic surgeon nurse told me it was really 20 (very disappointing!). I really , really hate the drains but I understand they are necessary.

I can’t think of anything else, but will add to this again when I get thorough week 3 of recovery.

I hope this is helpful to someone else out there going through a similar journey.

[jasonmi11]

You’ve been hit with an unimaginable amount all at once. Please don’t try to solve everything today. Tell the hospital/oncology social worker clearly that you are facing homelessness, have no income or transport, and have three cats depending on you. Ask what emergency housing, financial, transport, food, and patient-support options they can arrange.

Most importantly, please don’t face the despair alone. If you feel you may not be able to keep yourself safe, tell someone at the hospital immediately or contact emergency/crisis support. You’ve survived a lot already, and you deserve help through the next step.

[nell3]

Get in touch with your local council who will have the number of the cancer care people. I found them very, very helpful for me. Also, I have a dog and a friend told me about the Cinnamon Trust which has been a comfort for me.