ER-, PR-, Her2+ Roll call
Comments
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Hi everyone. Just wondering if I could get your views on this one.
So I’ve recently been told that I achieved a pcr (a bit of DCIS left but all IDS gone) from neoadjuvant chemo. I’m British but based in Qatar and while the care I’ve received here has been excellent, I was going to get a second opinion from a surgeon (who is also a trained oncologist) at the Royal Marsden on the rest of my treatment plan for peace of mind. For reference, Royal Marsden is the best cancer hospital in the UK (and one of the best in the world).
I don’t have the follow up with oncologist until Wednesday, but have effectively been told that I now need radiation, target therapy (phesgo) and then that’s it.
All seems quite straightforward, but I'm wondering if I should still have this call with the RM surgeon to check nothing has been missed? What do you think?
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@jessybessy I vote yes to your second opinion from the surgeon at the Royal Marsden. I think you’ll appreciate the extra peace of mind.
I promise to post a pic when my brows are all done! It’s a multi step process the way she does it plus healing time.
Hope everybody has a good week!!
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@jessybessy I would also go for a second opinion as it sounds like that would put your mind at ease. We’re it me, I would do it too.
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Agree. I'm sure he'll recommend the same thing tbh but will be good to be 100% sure.
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@jessybessy I think you received the standard treatment (there’s not much choice, everything is standardized), the treatment and the surgery were completely successful, and everything went very well. I think you are being very well treated, and I don’t think you "need" a second opinion. However, as the other girls said, if it helps you feel calmer, talk with the other surgeon 😊
Nothing beats having peace of mind!
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@jessybessy I agree with everyone else about moving forward with your original plan of a second opinion. I think the plan laid out is probably going to be the same either way. The radiation should take care of the DCIS from what I've read. I had DCIS and IDC in my first cancer diagnosis pathology report but none in the post surgery one. Sounds like you have been in really good hands so far!!
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Yes - I think this surgeon knows of some great people who can potentially do a DIEP further down the road too. I currently have an expander in and they don't do DIEPs out here.
As you say, more peace of mind than anything.
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Hey ladies! I had almost forgot about my follow up appt today with the radiation doc. Who has been to their follow up already? What should I expect?
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@grammie2 Hi! I really don't know, my radiotherapy follow-up appointment is only in February 2026 (a whole year later!). On the day I finished radiotherapy, I was seen by a nurse and the doctor, who said everything was great and gave me the recommendations: lots of moisturizer for another month, no wearing a bra directly on the skin (always over an inside-out t-shirt), and no sun exposure for six months.
I'm curious about your appointment! Let us know how it went. Good luck!
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@catarina_fm Yeah when I remembered I even had the appt. I wondered what there is to do?? Funny you mention about not wearing a bra touching the skin. I'm having to wear a compression bra. I started swelling again (and of course I have the nasty seroma). I've worn the compression bra faithfully for over a week now and can tell a huge difference. Skin wise, I think I'm ok. It is still darker where radiated for sure.
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@grammie2 tomorrow marks two weeks since I finished radiotherapy, and my skin is great. I've continued applying moisturizer three times a day and drinking plenty of water. Here, doctors tell everyone to wear a cotton T-shirt inside out, directly in contact with the skin. Only after that can we put on the rest, including a bra. We're supposed to wear this throughout radiotherapy and for another month after finishing. I'm still using it.
My skin is no longer red or sore; it darkened but is now developing lighter patches, meaning it's returning to my normal color.
The seroma is really a nuisance 🥺. From what I’ve read, it eventually disappears, but it can take several months. Compression definitely helps.
Your appointment might be to check on the seroma? You got worse after radiation, didn’t you?
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Hey ladies! I had a great report from my radiation follow up. I didn't see my actual doc but his assistant. She was very thorough! She did a physical exam of both breasts to check for any concerns. She complimented my skin but did point out an area that was thickening. I was so glad to have someone physically feel my breast and lymph node area and say " there is nothing abnormal" !! I get a little icky feeling the surgical sites because of the seroma and site in general lol. And honestly, the armpit area feels lumpy to me. I know there are lumpy areas and I don't know what's normal and what's not! She said the swelling was well managed and nothing concerning.
I have a mammo scheduled May 29th which is a couple of weeks after my last Phesgo. No other discussion of MRI or PET scans unless I have concerning symptoms or my MO has concerns with bloodwork at Phesgo shots.
Praying everyone is doing well!!
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@grammie2 That is awesome news! SO happy for you! May will be here before you know it!
I did NOT get my drain removed on Friday. I didn't see my surgeon, but the nurse practitioner who wants to see my output less than 30 for three days in a row…boo. I had to move this week's Kadcyla treatment to next week because my surgeon wants me to be drain-free for a week before getting my first treatment. I'm still on for my radiology consult tomorrow and hope to get my drain out by Thursday in order to keep my treatment appointment next week. I don't understand my drain at all. I was 30, 29, 29, 38(!), 30, and 29 these past few days. I'm three weeks post surgery…and ready to get my next phase started. My hair fuzz is becoming more and more noticeable and I have three eyelashes on my lower right eyelid with one eyelash on the lower left. Woot!
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@grammie2 that's great! So everything was fine then, I'm glad 😊 My oncologist examines my breasts and armpits at every appointment, meaning every two months, and I’m grateful for that because I also find it uncomfortable to touch my breast. I have some slightly hard areas with no sensitivity. I also only have a mammogram and ultrasound scheduled for the end of the Herceptin treatment, so only in December! Keep me posted, you're almost done with Phesgo too! 😍
@beekaycro24 It’s really a pain that you have to keep the drain for so long, but it's already draining very little liquid, so it will be removed very soon. It’s completely normal that you're fed up with it! I don’t think the 38 ml is too concerning—it only happened once, and you're already producing much less fluid.
I feel like my hair, eyelashes, and eyebrows are growing slower than "normal" compared to other ladies. It’s been over three months since I finished chemo, and my eyelashes and eyebrows are still very small (I have a good few dozen eyelashes now, but they’re very short, and my eyebrows are just a barely noticeable fuzz). My hair is about 4 millimeters long now, still with some gaps. Let’s see if things start speeding up.You’re on the right track—three weeks after surgery, I had nothing at all! You’ll start seeing a big difference soon, just wait and see.
A question for everyone: I went to the health center last week because I was called in. It’s the place in my area where we get vaccines and go when we’re sick with minor issues that don’t require a hospital visit.
I was informed that after my treatment, I’ll need to be re-immunized with most of the vaccines I had before because, apparently, chemotherapy almost "resets" the immune system. I have to admit I had never thought about that, but it makes sense.
Have you been told about this? I think I can only do it next year, several months after finishing Herceptin.
The nurse mentioned that she will only give me the vaccines after my oncologist's approval, but they wanted to inform me about it beforehand.
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@catarina_fm I have some areas that feel numb and weird too! No one has mentioned being revaccinated. I honestly have only had the Covid vaccine as an adult. I had all of the childhood immunizations but nothing since. Flu, pneumonia vaccines are offered but not required. What are your vaccine requirements in your country? I'm very curious about this and will need to ask my MO about this. And I am with you on the slow hair growth! I have saw comments that people believe Phesgo slows the process down. Not sure if that is legit though. Mine is filled in more or less, about 1/2 inch long. I never lost all of my brows or lashes but the bare spots are just starting to come in. My arms are just short fuzz. I'm getting impatient for the hair on my head though :(
@beekaycro24 so sorry about the drain. That really stinks. But fluid is tricky! I didn't receive a drain after my lumpectomy and that's probably why I have the seroma sadly. But I still fight fluid in that breast. Good luck with your radiation appt!
Hope all of you other ladies are doing well!!!! Hugs!
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Suck-it-up-Buttercup is OUT of my body! Doing my happy dance! Seriously…I'm even happy to be wearing a tight bra 24 hours for a few days…lol! I went for my radiology consult today. I will be getting six weeks of radiation…they're going to do smaller doses with hopes of minimizing side effects and/or bone/tissue damage…said each session will take 15 minutes or less and should start not next week, but maybe the following one. I've also decided to move my Kadcyla treatments to this location (same docs and nurses, just here on Wednesdays) since it's a 30 minute drive, as opposed to 1.5 hour drive. The only reason I drove that far was because my labs and everything could be done at the one location with results within 30 minutes of blood being drawn. Now, I'll have to go on the Monday before my treatment between 8:00 and 9:30 to have blood drawn, then go back on Wednesday for treatment. NOT a big deal since I'll have to be there on Mondays and Wednesdays for radiology. If I like it, I might just finish out my treatment there. I have a PT consult on next Friday as well. I'm hoping I can get it moved closer to home. Not sure if I'm seeing a Lymphema specialist or what. I'll find out next week. I am SO ready to get this next phase going!
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Hi all, glad you all seem to be getting through the treatments and headed to somewhat normalcy. I have not heard about resetting the vaccines. I have had a few for international travel in adulthood, with the covid vax (wont do more of those though as I have heart issues now as a result of the vax or covid or both). I actually had a haircut this week (I am a short hair girlie) and I feel so much more like myself - hair wise.
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@beekaycro24 oh I'm dancing your happy dance with u! I remember when I got my dreadful drains out..oh I was thrilled and relieved!
@djschmidt1 short hair is the new chic, right?! I'm sure u look fab!
I have no idea about the vaccines but interesting topic!
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@beekaycro24 I'm really happy! That's great—one less thing to worry about. Good luck with the start of your next treatments! Fortunately, radiation is much easier and more manageable, as long as you keep your skin well-hydrated. Drinking plenty of water also helps… But they'll give you all the recommendations during your appointment. I'm believing Kadcyla won’t cause you any major issues.
As for the vaccines, what the nurse told me is that I'll have to repeat ALL the vaccines I’ve had since birth (except, of course, for those against diseases that have already been eradicated) she talked about measles, rubella, tetanus, hepatitis B, etc. Apparently, chemo wipes out our immunity. I have an appointment with my oncologist on March 20, so I'll ask about this. But honestly, I'm scared of being unvaccinated… Just last month, an adult died of measles in my country. He was a foreigner, since the vaccine is mandatory here, but with the rise of anti-vaccine movements, some diseases are making a comeback. So, I want to clarify this and get vaccinated again as soon as possible.
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@beekaycro24 So long, Buttercup! I’m doing a happy dance for you!
I also hadn’t heard about needing new vaccines. I’m going to ask about that, too.
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I’m on day 7 of the first round of eyebrow nanoblading and I feel there’s so much improvement. Here’s before and after. They are supposed to fade and need at least another round in two months.
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Wow! That looks amazing!
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@aborayis wow, what a difference! I really like it, it looks great! I'm starting to feel hopeful about my case—if my eyebrows don’t grow back well, I’ll do the same!
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catarina - I have been through breast cancer twice and have many friends who have had various cancer treatments. None of us have ever heard that treatments wipe out vaccination status. In fact my PCP and oncologist specifically made sure that I had the recommended vaccinations before starting chemo.
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@minustwo yeah, that's why I want to clarify this with the doctor. A nurse told me this, and she might not be as well-informed. I asked to see if any of you knew anything about it. I'll come back later to tell you what the doctor said!
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@catarina_fm I did some googling and found some studies where children who undergo chemo have lower antibodies from the vaccines after chemo. Studies found giving them boosters after chemo improved their immune response to those diseases. Look forward to hearing what they tell you and others who plan to ask.
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@snm no pain at all! She used a numbing cream. She’s a cosmetic tattooer. She and her sister have a shop. Her sister is a makeup artist and brow shaping expert and the woman I went to does permanent makeup and brow nanoblading. I found her through a friend who’s been going to her for her brows for over ten years. They need touching up every 6-12 months. Here are her prices just to give you an idea. She’s in northern NJ. This is nanoblading (a lighter touch and not as deep as micro blading). She does brushstrokes and shading and is meticulous and lovely. Also I had zero downtime.
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Hi ladies. Hair question for those with regrowth post chemo. Did you have any areas that were thinner? My crown area is really thin. I honestly hadn't even looked at it in the mirror for a couple of months. And my back is way longer than the top and sides. Anyone use any hair thickening or growth supplements or creams? I have biotin gummies but not faithful about them. A friend gave me homemade rosemary rinse but I haven't really noticed a difference. I have been a wig wearer for the most part. Mainly because I didn't want sympathy stares and also I kept it from my dad. He passed away without having to know. He had already lost my mom, brother and sister and I just couldn't do that to him. This week has been my "come out" week and gone wigless to work. Feels kinda freeing. LOL. Would love to hear any tips or tricks please! Hugs to you all!!
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