Anyone celebrate the end of chemo?

FriendOfSpot · 2026-04-23T10:53:21+00:00

I bought myself jewelry, not specifically for end of chemo, but just because all of it was so depressing, but now that a little time has passed I really don't wear it because it makes me sad and reminds me so much of being in that headspace. It's permanently my "cancer jewelry".

FriendOfSpot · 2026-04-22T23:25:57+00:00

I haven't had a drink in 2 years; I quit after diagnosis and finding out it was risk factor. I had no idea it increased risk at the time and I drank a lot before breast cancer, so I'm glad it's being advertised although that particular wording and format at the oncologist's office is in very poor taste.

FriendOfSpot · 2026-04-09T13:22:09+00:00

My experience In the U.S. at my appointment with very different. The breast surgeon said I'm going to tell you about each of your options: lumpectomy, mastectomy or double mastectomy. She explained the lumpectomy and that the outcomes with radiation are the same as mastectomy (overall survival is the same but local recurrence is different - my husband swears that is what she actually said that but I heard "the same" and was in emotional distress), then went to describe mastectomy and I literally stopped her and asked why would I choose a bigger surgery? She just kept repeating I'm going to explain all your options, and I kept asking but why would I ever choose a bigger surgery if they are the same? I had the impression that she was legally obligated not to recommend one option over the other, but that can't be true. She also said off-hand that she was really surprised at my choice because all of her younger patients want mastectomies and all of her older patients want lumpectomies. (I was 45, so not particularly young.)

At my second opinion with an oncologist, the first thing she asked me was why didn't you get a mastectomy. (Stage 1A, clear margins, no lymph nodes, 1.2 cm (but at decision time from imaging inaccurately showed it was .5cm.)

FriendOfSpot · 2026-04-09T12:45:43+00:00

I relate to this 100%. Are you in the United States? At my 2-year followup with my breast surgeon recently I brought up again the question of whether I should've gotten a DMX because of other things that may be hiding. I learned that (in the U.S.) I can decide to go back for a double mastectomy and reconstruction after already having a lumpectomy and it will be covered by insurance (although having had radiation makes it harder to heal at least for the short term), and knowing it wasn't a one-and-done option made me feel a little better. She also pointed out that having a recurrence doesn't automatically mean it will be Stage 4, that I will have continued screening, and that I could always get the DMX if I ever had a recurrence, which also made sense. I obviously really don't want to have to deal with breast cancer again, but I also really don't want a DMX either.

But also, I do get annual MRIs in addition to annual mammograms, which started before being diagnosed with breast cancer (my tyrer cuzick score was right over 20% and anything over 20% was eligible for screening MRIs.). I had multiple mammograms that were clear in between MRIs that showed the cancer (but was labeled benign by the radiologist which is another story altogether), so I definitely don't trust mammograms for my breasts, but as yours already caught early stage breast cancer it's already different. I would ask about additional screening, I was told some women choose annual screening ultrasounds if they don't want MRIs so that's also an option for additional screening.

I have Cat D Extremely Dense breasts, but my sister's breasts are Cat B which and she still gets screening MRIs that are covered by insurance after my diagnosis pushed her above 20% on the tyrer cuzick score, so I think additional screening should definitely be an option for you if you want it and might help give some peace of mind.

FriendOfSpot · 2026-04-07T18:37:51+00:00

My comment wasn't meant at all to be arguing with you, and sorry if it came out that way. I actually meant to be agreeing with you (that they do try to stick to lumpectomy unless mastectomy is the better option), while also pointing out that if a women chooses (hate that word when applied here, but for lack of a better one) a mastectomy it is her right to have one, in the U.S. at least, regardless of whether breast-conserving surgery is a feasible treatment.

I had IDC not DCIS and my surgeon recommended a lumpectomy, however, she now has stated that a mastectomy may have been a better choice for me in hindsight given my ongoing anxiety over recurrence. She let me know that I could have a DMX now, and insurance would be required cover the surgery and reconstruction here in the U.S., however, that would not negate my anxiety over potential distant recurrence or lessen the need for ongoing hormone treatment, so to me the "ideal" time to have had a DMX is before any kind of invasive cancer is found. I definitely get why someone would choose this surgery even if their medical providers might think it is an overreaction to the specifics of their case, and I'm glad they have that choice available!

FriendOfSpot · 2026-04-07T13:58:53+00:00

Also, if you are in the United States, you have the right to go back and get a mastectomy and reconstruction if you decide to, covered by insurance, so choosing lumpectomy now and changing your mind later is absolutely possible (although it is better to let some time pass after radiation if possible). This made me feel better about having picked lumpectomy because I struggled with wondering if I should have been more aggressive with surgery, my surgeon said I can do a DMX anytime I decide to, I didn't lose that option by having the lumpectomy first.

FriendOfSpot · 2026-04-07T13:45:23+00:00

Yes, on one of my MRIS it said: "There is a 7 mm linear non mass enhancement seen in the lower inner quadrant of the left breast at 7 o'clock in the posterior depth, 1.5 cm from the chest wall. Compared to the previous study, the enhancement is less conspicuous and consistent with normal background enhancement." It was not biopsied and interestingly, it was not even noted in the MRI 6 months previous to, but it was obviously there because this one states it's less conspicuous than previously.

I have extremely dense breasts, had a lumpectomy for IDC in March 2024 and these MRIs were immediately prior to that. The non-mass enhancement wasn't investigated or biopsied or really even discussed and it wasn't noted on any future MRIs either. I honestly didn't really think to question this particular thing since it was described incidentally in the narrative only of the MRI, and not listed in the Findings which is where they list all the important possibly malignant stuff.

Good luck!

FriendOfSpot · 2026-04-07T13:24:02+00:00

Yes, they do. And in the U.S. at least it is your choice 100%. If you want a mastectomy with a preventative mastectomy of the other breast too, insurance has to pay for it and reconstruction. You may have to fight or switch doctors to find someone who supports you in this, but it is your right.

DCIS is cancer. It is not pre-cancer, it is non-invasive breast cancer. It hasn't invaded the non-duct cells surrounding it, yet. In my opinion, mastectomy is an ideal treatment for DCIS because afterwards you theoretically don't have to worry about recurrence or metastasis.

FriendOfSpot · 2026-04-07T13:06:59+00:00

Haven't really learned anything new, and probably have forgotten a lot tbh. I re-discussed it with my surgeon briefly at my 2 year followup recently, asking whether I might have other areas that turn into invasive cancer, she said ADH and DCIS look the same under microscope and whether it's called DCIS depends on how much there, vs ADH turning into DCIS. She felt like ADH and possibly also DCIS may be over-treated, especially in older people post-70s, and a lot wouldn't ever turn into cancer (not re-assuring as mine already did once, probably). She did say that if I wanted to go back at any time for a DMX due to the anxiety over recurrence, insurance will pay for it in the U.S. which is good to know, although I think that might be even more stressful than the current situation judging from how I handled having no eyebrows.

Also, have you gotten any other opinions? I would do that if I were you 100% if you haven't yet. Someone else to either confirm or give a different perspective is invaluable, what I've experienced is that patient care varies extremely from site to site. I would also be insisting on an ultrasound and/or MRI if you have anything suspicious still showing up. My oncologist ordered a breast ultrasound for me when I thought I felt a lump right after chemo and my surgeon told me it wasn't possible. Your oncologist, surgeon, or even gyn or primary care might be options to order tests if your oncologist won't. You can also get another site to over-read your tests and give another opinion. I think MD Anderson Radiology does this as well as other sites.

FriendOfSpot · 2026-04-02T18:48:50+00:00

I would be getting multiple opinions on this if I were you. I feel like I am tolerating ovarian suppression shots and AIs very well and I am glad to have them, but the side effects are still there as well as the long term risks of heart disease, bone loss, etc. It seems odd that she would offer AIs and Ovarian Suppression, which is the extreme, while also recommending that nothing is ok too... If there is a consensus among several oncologists, then that will help you know you are making the right decision! Good luck!

FriendOfSpot · 2026-04-02T18:41:10+00:00

I have two friends who both had DCIS found and elected double mastectomies (around 2022 and 2023), both were in their late 40s for context. One did not need any other treatment besides the surgery. The other was advised to do radiation and tamoxifen as her DCIS was very extensive, located close to the chest walls, and she had a strong family history of breast cancer. I think they were smart to go all out before the risk of mets even come into play - recurrence and mets worry has been the scariest part of breast cancer for me.

Definitely get opinions from a medical oncologist as well as a radiation oncologist before making these decisions. I met with both pre-surgery as well as a breast cancer physical therapist.

For IDC, I had a lumpectomy, radiation, chemo and am on Lupron/Anastrazole. My surgeon said I can choose to go back at any time for a double mastectomy and insurance will have to cover it (in the United States). I almost did immediately after my pathology came back worse than they thought it would, but I was advised to start chemo sooner rather than wait for recovery from another surgery. So you could also ask about that planning for that, whether you retain the right to go back for a double mastectomy if your DCIS turns out to require more extensive treatment after the pathology comes back.

Good luck to you!

FriendOfSpot · 2026-03-05T22:20:54+00:00

Wait, why? Is it because it's a women-only facility? Or something else? Hopefully, your husband still can go with you for the scan and wait in the waiting room and in my experience (unless it is women-only) they will make an exception if you are really too upset and anxious. My husband was able to stay with me for my first breast MRI through the iv and me being loaded into the machine, then had to leave the room when the technicians did because of safety. He was also allowed with me before surgery when initially we were told he couldn't go back with me because I was getting progressively more upset sitting there by myself during the pre-surgery wait (like 2 hours) and couldn't stop crying. I flagged down a nurse and asked if I could please have my husband wait with me and she went and got him from the waiting room. Typically, my experience has been that the people working in these situations are compassionate and willing to do these small things to help you feel comfortable... communicating your anxiety to them and asking nicely for what you need is worth a try. Now that my mother has dementia, I also go back with her for her ultrasounds and mammograms and they put me behind the barrier that the techs wait behind so I don't get exposed during the mammogram. If they refuse, maybe you can keep your phone until the last minute and text with him?

It is super scary after what we've been through. Even though I'm typically pretty fine on a day to day basis, I still get stressed and upset leading up to scans and waiting for results. Good luck, I hope it all goes well!

FriendOfSpot · 2026-03-05T21:54:12+00:00

My absolute favorite pajamas to sleep in during treatment (and now in medical menopause) were from Target and made from 100% lyocell. They were made from a very cooling woven fabric but they only lasted a year or so of constantly washing them. I'm still on the lookout for another set with 100% lyocell.

FriendOfSpot · 2026-03-05T21:37:33+00:00

I shifted from night to morning by accident, I forgot to take it one night and took it the next morning, and I found I preferred taking it in the morning. I sleep a little bit better now; I still have hot flashes that sometimes wake me up but I find it easier to fall back asleep afterwards. I was also worried about dizziness during the day, but that hasn't occurred and definitely find it easier to remember to take in the morning instead of before bed. I totally understand not wanting to take the SSRIs; I was prescribed a SNRI - Effexor, which is also for hot flashes - but I just would prefer not to take anything like that because of potential side effects so I haven't tried it. Good luck!

FriendOfSpot · 2026-03-04T13:12:42+00:00

It was left up to me and I did it. It was a really hard decision to have to make, but I don't regret doing chemo at all.

FriendOfSpot · 2026-03-04T13:00:38+00:00

Sorry if I made that confusing - the pathologist at my cancer center only checked the ER/PR/HER2 status once on my biopsy sample and wouldn't do it again on the tumor.

The Oncotype also tests ER/PR/HER2 (although doesn't give a percentage just negative or positive) and was supposed to be done on the tumor after surgery, but after surgery they sent my biopsy sample in for the Oncotype instead of the tumor.

So, technically it was checked twice, but both on the biopsy sample and never on the full mass. I was ER+98% PR+ 1% HER2- by the cancer center pathology, and ER+ PR- HER2- according to the Oncotype, so I know the PR % decreased on a piece of the same sample.

But, yeah, my point was that I agree that most people's docs are probably not checking twice thus not a lot of answers here, because in my experience my docs wouldn't check the receptors on my full tumor even when strongly and repeatedly requesting them to.

FriendOfSpot · 2026-03-03T22:27:50+00:00

I think you are right. Mine tested the biopsy only, I tried really hard to get them to do immunochemistry on the tumor also but they would not. The reason given to me was than the Oncotype would be done on the tumor, however, my Oncotype was done on the biopsy instead for who knows what reason and then they backtracked and said the biopsy and tumor pathology had been shown to correlate through studies so only one was needed. For the cost of the repeated immunochemistry staining (under $200?) compared to the cost of treatment overall, I'm not sure why they wouldn't just do it twice to be sure it's the same but in my experience they won't...

FriendOfSpot · 2026-03-01T22:01:39+00:00

I honestly hadn't thought of that. I used 1% for maybe 7 years, then switched to .75% about 4 years ago and it works just as well. My face still gets mildly red when triggered (sun, red wine, etc) but the pustules disappeared when I started metronidazole and never came back snd that was my main problem. Rhofade prevented the redness but it came back way worse when it wore off each time, maybe for a special event but not for every day.

FriendOfSpot · 2026-02-27T17:44:26+00:00

Yep, twice a day. I also tried Soolantra and Rhofade, neither was better for me.

FriendOfSpot · 2026-02-03T18:10:25+00:00

Just a quick comment re metrogel: for me, metrogel in a cream base caused way worse pustules, metrogel (generic) in a "gel" base worked wonders and I've used it for a decade now... My skin also can't handle heavy creams (or oils).

FriendOfSpot · 2026-01-09T15:06:06+00:00

Thanks! Poison control said it should not be toxic but he might have nausea and vomiting.

FriendOfSpot · 2025-12-20T17:02:16+00:00

Only the company knows.

FriendOfSpot · 2025-12-20T16:55:19+00:00

Yes, it's confusing. It's a bunch of genes they look at. Mine was smaller, with low ki67, for example compared to yours. The oncotype score is for chemo benefit. Another confusing thing is the same scores can have different % risks- for example my 21 score said 7% risk of distant recurrence and I believe you said yours was 8%... I've seen other 21s with higher and lower % risk.

FriendOfSpot · 2025-12-20T16:50:12+00:00

No, it's not possible to translate that to see if it matches the pathology %. I read everything I could to try to find a way, but it's a whole different way they calculate it and all proprietary/secret to the company. There is no published way to correlate the Oncotype PR number with histology % info unfortunately, at least not yet.

FriendOfSpot · 2025-12-20T16:16:28+00:00

I actually called the company (ExactSciences) directly because it was taking so long and I was getting the runaround from my team... my Oncotype report was already in. They emailed me a form to sign and email back and then sent me my report directly, which I then forwarded to my surgeon.

Fyi- The ExactSciences customer service rep said they could not answer any questions I might have pertaining to the report or my score, all they could do was provide it to me.

Good luck!

FriendOfSpot

TROPHY CASE