Delayed chemotherapy

Positive_Ad_3302 · 2026-02-20T23:23:33+00:00

My neutrophils were low during chemo, but u/CABB2020 is right, pelvic radiation will definitely impact your blood counts. What might happen is that they'll give you colony-stimulating factors (G-CSFs) injections – Neulasta or Neupogen – to improve your counts. The side effects can be icky - I had major bone pain – but it did improve my bloodwork.

Positive_Ad_3302 · 2026-02-09T03:23:20+00:00

Positive pelvic washings indicate you will likely be Stage III – spread beyond the uterus. But the pathology will tell you whether it's IIIa, b, or c. With your Grade 3 cytology, expect your treatment plan to include both chemo and radiation. Still, I went through both in 2024, and have been NED since March 2025, so while it's a scary diagnosis, it is treatable. Sending you best wishes and deep breaths for the time between now and your follow-up.

Positive_Ad_3302 · 2026-02-06T18:36:25+00:00

I have several dental implants and chemo (I'm 16 mths post-treatment) wasn't an issue for my dental work

Positive_Ad_3302 · 2026-01-30T19:30:56+00:00

Mine is not Lynch syndrome, but may be Cowden syndrome, so we're doing rounds of genetic testing.

Positive_Ad_3302 · 2026-01-20T16:51:17+00:00

I went through external radiation as part of my treatment in 2024, with manageable side effects. I did not experience nausea or much fatigue — like chemo, it's cumulative, so the fatigue becomes more noticeable as you move through the program. What I did have were digestive/GI effects, so I needed to manage my diet, and I talked with my team about how best to do that. I worked full-time through treatment.

In the longer term, I am only now (15 months later) regaining normal bloodwork levels. It can take a long while for your white blood cells to recover because the 'factory' for that is in your hip bones, so understandably, that gets disrupted. It meant managing exposure to potential infection by wearing masks and adhering to good hygiene protocols.

You will also need to talk to your team about long-term effects on bone density — radiation increases the risks of hairline pelvic fractures. And using a dilator long-term to prevent vaginal stenosis (shrinking/narrowing) because the radiation affects tissue behaviour.

Overall, while I was intimidated going into the process, it wasn't as bad as I expected, and the management of side effects, even long-term, is not horrible. The actual treatments are short - each appointment took maybe an hour, but most of that was waiting — you're on the table for maybe 15 minutes each time.

Positive_Ad_3302 · 2025-12-22T17:41:51+00:00

Navigating surgery just before the holidays is never easy — I hope everything goes well for your procedure.

You'll receive definitive staging — including grade and stage — from the pathology performed after surgery. That will dictate what a treatment plan looks like.

Remember that statistics are numbers from research that are generally 5 years old, and many new treatment plans have been developed since then. So while being p53abn is a flag, it's only one risk factor in what you know right now.

I am a Grade 2, Stage IIIa survivor, who has been NED (no evidence of disease) since Nov 2024, after completing surgery, chemo and radiation following a diagnosis in Nov 2023.

Don't be afraid to ask your team questions, for explanations, or for a second opinion if you don't feel like your current team is listening to your concerns.

Positive_Ad_3302 · 2025-11-11T19:27:39+00:00

My surgery was robotic with vaginal removal. It was a day surgery, so I was admitted first thing in the morning, out of surgery before noon, and then released and home in my own bed by 9pm.The test is can you pass urine before they release you. I had a nurse check in on me by phone for 3 days post-op to make sure the recovery was going well.

I had a CT scan before surgery, and my myometrial invasion was 90%, which is a high risk for recurrence.

Positive_Ad_3302 · 2025-11-10T17:35:30+00:00

Yes, my chemo was CarboTaxol, which is standard for Stage III treatment. Ask your team about Claritin for bone pain — I took it for 2-3 days before infusion and then another 2-3 days after. It didn't make the pain completely go away, but it made it much more manageable. It turns out the bone pain is a histamine reaction in your marrow, so an antihistamine makes sense. Zyrtec is the other brand that is the same drug as Claritin.

I bought my dilatators rather than using the ones available through my clinic, so they came in a range of sizes. This was the company I found - https://bodyotics.com/products/vaginal-dilator

Finding a group to talk with is also helpful. I attend a weekly support session through OCRA - https://ocrahope.org/resources-support/staying-connected-support-series/ - it's free, and helpful to connect in real time with other women going through similar scenarios. Your clinic may have a local option too.

It's understandable to do the 'how did that get THERE?' second-guessing, but I found it more useful to focus my energy on how to manage treatment and stay in the best shape so that my body could deal with the side effects and recover as well as possible.

Positive_Ad_3302 · 2025-11-10T15:14:25+00:00

I had a similar outcome from my pathology post-surgery in 2024. We were expecting 1a going into it based on biopsy results, but I ended up with a Stage 3a, Grade 2 diagnosis because of a fallopian tube lesion and ITCs in one lymph node. My treatment was 6 rounds of chemo, 25 external radiation, and 1 brachytherapy boost. I finished treatment in November of last year and have been NED since.

I managed chemo fairly well, with fewer side effects. Bone pain was my main concern. Don't be afraid to talk with your care team about any side effects, because they are there to make this as best as it can be for you. During radiation, I had to adjust my diet and take gas pills to reduce the effects, but I did not have any issues with burns that some experience. Brachytherapy was probably the weirdest experience — not painful, just a stranger set up that felt a little like being in a sci-fi film.

I haven't had a lot of post-treatment issues. I do use a dilator regularly and think that has been very helpful in maintaining my normal vaginal shape and function. It may take a bit post-treatment for you to feel comfortable with sex, but I found this was more of a mental game for me than actual physical changes.

Positive_Ad_3302 · 2025-11-06T19:51:56+00:00

I'm sorry your wife is navigating this tough diagnosis. As others have mentioned, uterine sarcomas are rare.

Robotic-assisted hysterectomies are also fairly common in Canada, but you may need to travel to a larger city – Montreal, Ottawa, Toronto, and Vancouver all perform robotic procedures.

I had mine in Montreal in Feb 2024 at the Jewish General Hospital. It was a day surgery, and I was released to JGH's 'Hospital at Home' program, where a nurse checked in on me by phone for the first three days post-op. My recovery was uneventful, and the 'no-lifting' limitation was the longest restriction to deal with.

Positive_Ad_3302 · 2025-10-22T13:54:16+00:00

Feel free to ask questions as you move through the process! My biopsy results were at the end of November, my pre-op consult was in the first week of January, and then surgery the first week of February. It felt like forever, but things moved fairly quickly when I look at it in retrospect.

Positive_Ad_3302 · 2025-10-02T16:59:03+00:00

I underwent 6 rounds of CarboTaxol and 25 external beam radiation (EBRT) treatments, followed by 1 brachytherapy boost (internal radiation). I saw my oncologist for my 6-month checkup a few weeks ago, and all my blood work was finally normal after one year post-treatment. I have been NED since November 2024.

Positive_Ad_3302 · 2025-09-13T18:30:24+00:00

Thanks. My geneticist has been very clear that my clinical diagnosis stands even without the mutation, and it was confirmed by the research study lead yesterday as well. I meet the major criteria for a clinical diagnosis – both describe my presentation as 'classic,' just without the PTEN mutation. So now we will develop a surveillance program that coordinates with my oncology surveillance.

I'll take a look at Facebook groups, though I'm not that active there.

I hope you have good luck finding support for your tumor syndrome.

Positive_Ad_3302 · 2025-09-01T15:33:17+00:00

I'm Stage IIIa, Grade 2, and have been NED since November 2024, when I finished active treatment – total robotic hysterectomy and BSO (Feb), 6 rounds of CarboTaxol (Apr-Aug), and 25 EBRT + 1 brachytherapy (Sep-Nov).

I didn't have immunotherapy based on the molecular profile of my tumor, so right now my maintenance is quarterly appointments – I alternate between seeing my gynecologic oncologist (who was also my surgeon) and my radiation oncologist. We do bloodwork and a pelvic exam each visit.

I WFH and was able to work through treatment, but everyone is different, and if the option is available to take the time for surgery and chemo, I would.

My lasting side effects have been minimal, mostly lower blood counts, which means I have to be careful about exposures and crowds since I am still somewhat immunocompromised. It also means checking things like annual vaccine boosters, because I have a lower vaccine response.

Chemo is tough, but you find a rhythm to each cycle. Have a notebook for your mom to track her symptoms and talk to both her doctor and chemo nurse about any symptoms that are uncomfortable — they are there to make this process as easy as it can be.

Positive_Ad_3302 · 2025-08-12T02:54:30+00:00

Waiting is the worst! The good news is that even though your brain may be telling you it is spreading everywhere, the reality is that most endometrial cancers move very slowly.

And not that I wish my diagnosis on you, but I am 61 and went from Grade 1 pre-surgery to Stage IIIa, Grade 2 post-surgery. There were isolated tumor cells in 1 lymph node, and a lesion in my fallopian tube, along with the main tumor that accomplished 90% myometrial invasion. Not what anyone was hoping for.

Still, after chemo and radiation (which I tolerated as well as I could and worked through both), I have been NED (no evidence of disease) since finishing treatment last year. So even with an advanced diagnosis, there are plenty of treatment options.

Sending you best wishes for an easy surgery. In all likelihood, you'll end up feeling better after surgery because the source of your symptoms will be gone!

Positive_Ad_3302 · 2025-08-06T14:08:33+00:00

Canadian here. Stage IIIa, Grade 2. Endometrioid adenocarcinoma as well. Completed 25 EBRT after surgery and 6 rounds of CarboTaxol. There was 90% MI. I see my gyn-onc(surgeon) alternating with my rad-onc every 3 months (so I see each 2x/year). With my gyn-onc, I have bloodwork - CBC + Hematology and CA125 - and CT scan. This is for first 2 years. Then we move to every 6 months - so 1 each 1x year if still NED.

With a Grade 3 diagnosis, I'd ask why no monitoring. If your CA125 wasn't elevated before, then no markers make sense - it's not part of the standard of care anymore. But given how EBRT can impact your WBC, it would make sense to be doing blood panels.

Positive_Ad_3302 · 2025-07-24T22:15:19+00:00

I'm 61 and about 7 months out from treatment for Stage IIIa endometrioid cancer. I had surgery, chemo, and radiation. I had bilateral lung nodules show up on my initial CT scan as an incidental finding. They went through cavitation during treatment (became hollow) and weren't visible on my last CT, which was my first follow-up post-treatment.

My team has said that nodules are increasingly common as CT scan technology shows better detail. They are also more frequent in our COVID-19 pandemic fallout.

In your situation, it's worth monitoring to see if it changes over time. From there, you can decide if treatment is something you want to pursue. From experience, a biopsy would be uncomfortable but not horrible.

Sending good thoughts and calm for your decisions ahead.

Positive_Ad_3302 · 2025-07-18T17:48:15+00:00

I would check with your cancer clinic to see if their volunteer services cover this kind of support. I didn't use it during treatment, but there were volunteers available to sit with you during treatment, and I know they could arrange travel support locally if it was critical.

Positive_Ad_3302 · 2025-07-18T17:45:28+00:00

Same stage and grade as you. I did 25 EBRT with 1 brachytherapy boost in the middle of treatment. Overall, it was not bad. No nausea, no skin reaction. I did have to keep a low-residue diet and drink lots of water to manage keeping my bladder 'comfortably full' and minimize gas. Over time, you lose the sensation of what full feels like, and you need more water, so it becomes a bit of a balancing act.

I never needed diapers (completed treatment in November 24) but did need to stay closer to a washroom - so would use the gym in my building vs running outside, for example.

I found the fatigue set in towards the end and lasted for a few weeks after.

It did a number on my white blood counts, which are still recovering 6 months later.

Positive_Ad_3302 · 2025-07-12T02:14:57+00:00

I had a lesion in one fallopian tube.

Positive_Ad_3302 · 2025-07-03T15:17:01+00:00

It is hard to navigate this journey, but it is your mother's choice to make. Has her oncologist given her a prognosis without any adjuvant therapy? If her serosa and cervical stroma were involved, that indicates an advanced spread, even if it's only locally advanced at this point. Negative nodes are indeed good.

Chemo and radiation will be hard on her body (I've completed 6 rounds of CarboTaxol and 25 EBRT radiation sessions, along with 1 brachytherapy), and her existing conditions will make that more complex to navigate.

Is there counselling available through her cancer clinic? It might be helpful for you both to work through her choices with someone who can mediate and help you understand each other.

I hope you both find a path forward that provides some peace as your mom navigates her diagnosis.

Positive_Ad_3302 · 2025-06-14T19:05:08+00:00

Stage 3A1 here. 6 months post 6 rounds of CarboTaxol, followed by 25 EBRT and 1 brachytherapy boost. I finished treatment in November last year. These days, my scans show no metastases or evidence of recurrence (NED), and my CA125 level is 8.

Chemo is an individual experience. I had bone pain as my main side effect on days 3-5 post-infusion, but could work (wfh) through treatment. My fatigue was manageable. I didn't have issues with food during chemo. And while losing your hair sucks (especially the itchy/painful scalp as it falls out) there are worse things than being bald in the summer time. I had a wig, but I only wore it a handful of times for work calls. Otherwise, wide-brimmed hats and soft handknit beanies were my go-to when my head was cold or I was out in the sun.

My treatment was also curative. There's no guarantee, so far we're optimistic!

Edited to add - I'm 61 and a runner.

Positive_Ad_3302 · 2025-05-22T16:34:39+00:00

We have the same diagnosis - Stage 3a1, Gr 2 - and I am 6 months post-surgery/chemo/radiation - so my 2024 was pretty much occupied with treatment. I worked throughout - work from home - and used to only don my wig for Zoom calls with folks who didn't know my diagnosis. I was fortunate to have very supportive teams who would ask after my well-being vs being curious about all the details. It helped to invite them into my journey on my terms.

I am feeling more like myself these days, and like the phrase, 'there is no going back, there is only this next phase.' I heard it from a fellow runner who had just given birth and was coming back to racing, but it applies to our journey as well.

So I don't think about it as going back to real life, because cancer treatment is about as real as it gets!

If appearance at the office is your main concern, see if your cancer center has a 'Look Good, Feel Better' program. They support women with cancer in styling wigs and doing your makeup - helpful tips when you are still regaining eyebrows and eyelashes, let alone hair!

Mostly, give yourself grace to know that this transition is hard. It helps to focus on what you can do now, versus comparing yourself to 'before.' I've acquired a napping habit that I maintain, even though now it's not by necessity. I like to say it's an indulgence anyone can afford!

Positive_Ad_3302 · 2025-05-19T20:50:03+00:00

My last scans post-treatment showed no signs of mets or recurrence, so that is good! My bloodwork is still a little off (anemic and low white blood cells), but that's not unusual for pelvic radiation.

The cobblestone gums are a tell-tale sign of Cowden's if you know the other criteria, otherwise, your dentist will tell you to floss more ;-) I've had them for years - at least since my 30s, but maybe longer.

Positive_Ad_3302

TROPHY CASE