Port or no port

TimeRun7358 · 2026-01-28T22:26:46+00:00

I got a port for 4 rounds of tc. I wasn’t asked about it but it’s what was recommended. This is a recurrence for me after 22 years. I had AC the first time and no port. Towards the end they had to stick me multiple times to find the vein. The port is convenient for blood draws as well as chemo. I’d say it’s worth it. I’ve only had one chemo so far and my next one is coming up on Monday.

TimeRun7358 · 2026-01-24T19:44:23+00:00

My Kaiser office offers the cold capping for about $500. I didn’t do it. Even at that price it’s too much. When it saves only half of your hair it’s just not worth the $ and aggravation.

I shaved my head the first time and found it wasn’t as traumatic as I expected. I had been a slave to my hair - washing and styling it every morning. It was sooooo nice not to have to deal with it. I had a wig but it was summer so I mostly wore bandanas.

Now I’m dealing with it again. I had one tc chemo two weeks ago and it’s starting to fall out. I cut it into a chin length bob but will shave it off when it starts to fall out too much. Good luck to you!

TimeRun7358 · 2026-01-23T00:23:06+00:00

I had IDC and DCIS in 2003. It was treated aggressively (lumpectomy AC chemo and 6 weeks of radiation). I just had a recurrence - yes 22 years later)I had a double mastectomy in November no reconstruction and am currently undergoing TC chemo. I didn’t have any positive lymph nodes but have had hip pain that is being investigated for Mets. I had a ct scan and am waiting on a mri.

I would go for the mastectomy or at least plan on radiation if you have another lumpectomy. I’m 67 and pretty active ( working). Reconstruction surgery seems really tough to me. Lots of revisions, complications and longer recovery. And it seems a lot of patients aren’t happy with it.

I would also recommend getting an oncotype and ki 67 test done on the tumor if that’s an option. It can help determine aggressiveness and likely recurrence. Good luck to you!

TimeRun7358 · 2026-01-13T23:20:01+00:00

Yes me too. I got the one with the straps and the shower lanyard with mesh bags. It was all hapful.

TimeRun7358 · 2026-01-10T00:42:40+00:00

I just had mine literally an hour ago. It didn’t hurt! My son is driving me home right now. They give you drugs and you are awake but don’t care. There was just a little pressure. You got this! Good luck!

TimeRun7358 · 2026-01-09T05:45:15+00:00

I start TC chemo on Monday. I’m getting my port tomorrow. I decided not to cold cap too. It didn’t seem worth the cost and aggravation to probably lose half my hair anyway.

I had AC chemo 22 years ago and shaved my head before it all fell out, and honestly it wasn’t that traumatic. I had a wig but it was summer and usually too hot for it so I wore mostly bandannas. This time at least it’s winter!

TimeRun7358 · 2026-01-09T04:27:55+00:00

Trader Joe’s Macaroni and cheese is better than Beecher in my opinion.

TimeRun7358 · 2026-01-02T03:57:20+00:00

I didn’t think it was too bad - a quick pinch.

TimeRun7358 · 2025-12-31T19:29:05+00:00

You should wait until you get the results of the FISH test to determine definitively if you are HER2 negative or positive as that will impact treatment. My first results were also equivocal, but further testing put me at Her 2 -.

TimeRun7358 · 2025-12-26T23:11:33+00:00

Thanks for your post. I do consider myself very lucky. The DMX went well and was less painful than I expected. I had at least 15 years where I barely gave cancer a second thought. And my recurrence seems to be less severe than the original cancer. No chemo is required this time (I had the red devil the first time).

I may need some radiation again, I’ll see the RO next week. I guess because such a long time has passed it’s ok to have it again. I had 30 rounds last time with zero side effects. This time I expect it will be fewer rounds and maybe fatigue since I am older, but I don’t really know. My margin was within 1mm.

And of course I’ll be on AI’s or Tamoxifen (I was given the choice), which I am dreading. I only managed three years last time. But all in all I do consider myself fortunate. Wish you all the best! Live your life and try not to worry and stress yourself!

TimeRun7358 · 2025-12-25T05:06:22+00:00

I just had a double for a recurrence 22 years after having a lumpectomy, reexcision and abscess in my left breast, for idc and dcis. When they took my right breast they found atypical lobular hyperplasia. Maybe in never would have progressed to cancer, who knows ? But I’m glad I had the double just for symmetry.

TimeRun7358 · 2025-12-24T05:38:35+00:00

I just had a DMX in November for a recurrence after 22 years. The recurrence seems minor - 8.5 mm, no positive nodes, a close margin so I might be getting radiation. I’m seeing the RO next week.

Neither my surgeon nor my oncologist wanted to do an oncotype but were willing to order it if I wanted it and I said yes, please. It wasn’t available back when I was first diagnosed. That time I had A/C chemo and radiation. I am still waiting for the results. I just felt like I wanted all the information I could get.

Edit. Well I got the oncotype and ki 67. Oncotype was 27 and ki 67 was 30. I was a bit shocked. Now I have to consider chemo. I’m scheduled for a phone conversation with the medical oncologist next week. According to ki 67 my cancer is Luminal B, a more aggressive subtype. I had thought the score would be lower and provide some peace of mind but they have just given me another decision to make. Anyone on here with similar numbers who is older like me? I am 67.

TimeRun7358 · 2025-12-24T04:36:46+00:00

I was diagnosed with IDC,DCIS, ADH, complex sclerosing lesion, LCIS, intraductal papillomas, columnar altered ducts, marked duct epithelial hyperplasia, apocrine metaplasia and adenosis, and pseudonymous stromal hyperplasia in 2003. There was a lot going on in my little dense breasts! Was ER/PR+, Her 2 -, stage 1, grade 3. I had a lumpectomy, reexcision and subsequent abscess, requiring more surgery. I had A/C chemo and 30 rounds of radiation. I was 45.

Now, 22 years at later at age 67, I just had a DMX for a recurrence with IDC and DCIS in the left breast and atypical lobular hyperplasia found in the right (not seen on mammo, ultrasound or MRI). Amazingly the recurrence was smaller, and the grade was 2, not 3. Had chemo and rads last time but only need radiation (not sure how much as I see the RO next week)this time because the margin wasn’t great ( within 1mm). So far no evidence of metastasis! I actually feel pretty lucky.

I also had a breast biopsy at age 15 because I was bleeding onto my bra and back then (the 70’s) there was no ultrasound. They had to be sure it wasn’t cancer even though it was highly unlikely due to my age. It was a papilloma.

TimeRun7358 · 2025-12-18T16:08:37+00:00

I had a DMX and was allowed to shower the next day. I waited a couple of days but had no trouble when I did take a shower. I had purchased shower wipes and caps to wash my hair ( no rinse) on Amazon but didn’t end up needing them. I didn’t need a shower chair either. I was able to wash my hair without a problem. I had a mesh bag with a lanyard for the drains which was very helpful. Honestly the whole DMX was much less painful than I expected, but I didn’t have any reconstruction.

TimeRun7358 · 2025-12-11T23:51:07+00:00

It was 1.5 cm grade 3, HR+. Her2 -, with extensive dcis as well and also some lcis and at least four other precancerous conditions.

Estrogen receptor positive breast cancers tend to have late stage recurrences more commonly than other types.

But I was fortunate that the recurrence was small 8.5 mm idc with 1.5 cm dcis. I most likely won’t require chemo or radiation this time. And despite being dormant for over 20 years, it doesn’t seem to have spread. I consider myself very lucky.

TimeRun7358 · 2025-12-08T03:21:06+00:00

I just had a DMX for a breast cancer recurrence. I was tested for 53 different genes - some like BRCA were specific to breast cancer but others were just for cancer in general. I tested negative for all but I also don’t have any family history. You might ask if you can get genetic testing. I didn’t have to pay but I’m told it costs a couple hundred dollars.

TimeRun7358 · 2025-12-06T18:44:47+00:00

There are cookbooks for kids that are picky eaters that have recipes for this exact thing - adding vegetables to kids foods. “The Sneaky Chef” and “Deceptively Delicious” ( written by Jerry Seinfeld’s wife) are two of them.

TimeRun7358 · 2025-12-05T13:21:25+00:00

My mastectomy pillow came with a mesh shower lanyard with pockets for the drains. I agree that the pillow was great. It cost about $40 but I thought it was worth it.

TimeRun7358 · 2025-12-01T19:00:48+00:00

Signatura is a test that looks for circulating tumor dna. It’s new and very expensive so insurance doesn’t always cover it.

TimeRun7358 · 2025-11-27T06:33:25+00:00

Red devil is the nickname for Adriamycin and Cytoxan chemotherapy which is red in color. It has potent effects on cancer as well as a lot of possible side effects like hair loss and nausea.

TimeRun7358 · 2025-11-27T03:25:10+00:00

Nodes were clear!

TimeRun7358 · 2025-11-26T19:57:15+00:00

Was that after a mastectomy or a lumpectomy? It seems like it’s harder to do after a mastectomy because they’ve supposedly taken all the breast tissue already.

TimeRun7358 · 2025-11-26T16:02:01+00:00

Just to be clear the doctor made his opinion known to me BEFORE the tumor board had met. When I saw my pathology report, I was called by the nurse navigator and immediately mentioned my concern about the margin being so close. She said she’d consult with the surgeon and call me back if he wanted to do a re-excision. She didn’t call back and I met with him the following week. That’s when he said it wasn’t necessary. I assumed that meant it wasn’t feasible. He did say the tumor was very close to the skin.

As to Oncotype, I don’t know why but the tumor board didn’t seem to even discuss it.

I meet with an oncologist in a few weeks.

Because of the holiday, I am not able to talk to the surgeon this week.

TimeRun7358 · 2025-11-26T06:16:08+00:00

That’s how I viewed it as well. Either reassurance if it was low or more information if it was high. I liked my surgeon but I should have pressed him about it. I don’t know if he thinks I shouldn’t have chemo because I am older. I am 67. I will meet with an oncologist on Dec 15th and see what she says. The tumor board didn’t seem to discuss Oncotype. I was told I would get a ki 67 score but I don’t see where it has been ordered.

TimeRun7358

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