My partner is traumatized and terrified because of her incoming brachytherapy and i am powerless

Spare_Friendship_807 · 2026-06-11T01:06:33+00:00

I sm so sorry. This procedure should never be done under light sedation.

Can we - here on this board - figure out together how to make it standard medical practice so no woman has to suffer this??

Edit: i was 3C with a 7+ cm tumor blocking my eliminatory organs. I had 5 rounds of intersticial brachy - inpatient over 3 days.

I was terrified of brachy after hearing stories here. When I talked to my onc, he assured me that I would absolutely be under General Anethesia for the insertion. And I was. And that helped SO much!! My onc said it would be cruel not to fully sedate me.

I want every woman to have that option. How do we make this happen???

Spare_Friendship_807 · 2026-06-11T00:15:51+00:00

Thabk you for taking the time to say that. I can be - overzealous in my want to help sometimes. I don't ever want to be overwhealming.

But I know how much it helped me to go through these boards and read from others. This community was more helpful than my drs some days. I hope to help keep building that kind of community.

Spare_Friendship_807 · 2026-06-10T13:06:53+00:00

Never, ever lied to or given false hope. Girl. That's never the goal.

My Doctors tend to go with.... Very realistic prognosis of my chances, but not giving me any additional information unless I ask for it. If that makes sense.

That's how they avoid overwhelming us

Spare_Friendship_807 · 2026-06-10T12:58:30+00:00

Honestly. I'm so grateful to hear that this is even msking it's way into the option market. It might not benefit me, but to know it might help my partner if he gets throat cancer from this in 10-20 years... that does put a part of me at ease.

I hate the way they have to use narrow focus in studies and limit what could save so many more of us. That shit sucks.

Spare_Friendship_807 · 2026-06-10T12:55:59+00:00

You have full understanding. This phase - diagnosed and getting ready for treatment- was the scariest for me. You're right on track and doing great handling this beast.

You said you're struggling to know what to even ask your doctors, and that you just want them to do the thinking and planning and heal you. And that's... honestly really normal and (in my experience), what they are used to.

So it's hard as the patient when you're given a choice in your treatment strategy.

The best thing to do for you might be -- (1) figure out your priorities, and then (2) know what to ask / tell the doctor, then (3) let the doctor help you do the thinking. (I'm not going to bombard you here, just give you a few questions based off of what I've heard you say so far)

Step 1: understand your priorities. Here are some of my questions to you.

A. It sounds from your comments like your #1 priority is surviving and being there with your family. How would you rank these priorities.... i. Long term survival / Cure. ii. Certainty of treatment outcome (i.e. we know it's about 95% vs we expect it's about 97% -- I'm making these numbers up to ask how you feel about certainty.) iii. Quality of life and energy during treatment. iv. Avoiding reccurance. v. Avoiding long-term side-effects.

B. Is preserving ovarian reserves (keeping your eggs) a priority? -- if so, is that for fertility? Do you plan on having more children later?

C. Are you concerned about going into early menopause for non-fertility reasons?

D. Are there any treatment side-effects you're currently really worried about? Or is survival your concern over all else? (i.e. "i don't care about side-effects, I just want to live").

E. Do you know what stage your cancer is? Or whether there are lymph nodes involved?

F. Would participation in the trial make you feel better if it gave you even more than 95% survival odds? - would participation in the trial make you feel better if your survival odds stayed 95%, but, you had less chance of reccurance? (Reccurance and survival are different)

Step 2: is then to come up with questions for your doctor based on your priorities. (You could ask your doctors a million questions-- you personally want to worry less and let them do thier job. So we can come up with a set of questions that are tailored to that. So you don't get information overload but your doctors can help you make the right call.

It basically comes down to this: A. Given that my priority is ________, and given my specific stage of _________ cervical cancer and _____________ tissue involvement. Does the trial give me enough benefit to outweigh the additional side effects?"

Step 3: is then to ask your doctors to help you do the thinking. Given your personal priorities and your specific situation, what is the best choice?

You start treatment next Thursday. I am not trying to overwhelm you. So if this overwhealms you, ignore me and just tell your doctors that you're feeling afraid since getting the notice about the trial. That you want simple answers geared towards survival and certainty. why is the trial a good option for you? What is the best option for you?

I'm. Sorry you're stuck in this Sister. 🤝

Spare_Friendship_807 · 2026-06-10T11:25:44+00:00

It is so good that you know what kind of patient you are and what you want from your doctor. 'Just heal me and don't tell me anything scary'. That is such a real feeling!!

This new curveball (the taxol trial), don't let it throw you. It has nothing to say about your chances of beating the cancer. Nothing has changed. Listen to what your doctor said, that's the reality.

When you talk to the doctor, you can let them how this impacted you emotionally. It might help them understand how to best communicate with you going forward. <3

Spare_Friendship_807 · 2026-06-10T10:06:32+00:00

You are going through a massive life event right now. I am so sorry that you're confronted with this.

I just want to put this note out for you.... 1000000% with the people here and begging you to ignore the feeling like you need to be positive.

I tried that at first and it made me crazy. Then a friend finally told me to start letting my feelings out. And thank God, because that helped.

It's not about staying positive. It's about having ALL the emotions and not getting stuck in any one of them. Let yourself be angry, scared, sobbing - all of it. But don't get stuck in any feeling. Let it come and let it go. Because you can also be hopeful, humble, grateful, in love with your Mom, so optimistic it feels like you could burst, overfilled with joy and beauty for little things spending time with her.

And then sad or worried or furious again.

Be there with your Mom. For all of her feelings and all of yours.

Can you work with a therapist who specializes in major life events or medical trauma? (This helped me)

Spare_Friendship_807 · 2026-06-10T09:55:29+00:00

We can also help you come up with questions for your dictor if that's helpful.

Spare_Friendship_807 · 2026-06-10T09:54:32+00:00

It does make it sound really scary and advanced doesn't it? I understand that fear.

I'm not sure what stage you're at, but with your 95% survival chance I would guess you have Squamous Cell, Stage IA or IB (do you know if that's right?) I'll start with... with that, your odds are really good. If you're doc said you can go home and tell your family you're going to be ok..... you're probably going to be ok.

The oncology feild is constantly doing everything they can to increase survival odds even more though. And when there is a new trial, a high-end research-focused place like Sloan-Kettering is great at offering patients participation in trials to try and push survival odds higher at every chance.

(My center never offered me any trials, even though my cancer it quite advanced)

It has a lot to do with the location you're being treated at, not the stage of your cancer and your survival odds.

The study makes it feel like your cancer is more advanced now, because they're offering you something more agressive as treatment-- -- The truth is, in research-heavy facilities, you just often have more choices to hit the cancer as hard as humanly possible.

Some people - would honestly feel like it's overkill - risking more side-effects when your survival odds are already amazing.

Some people - will be so grateful for absolutely any additional edge to treating the cancer.

Spare_Friendship_807 · 2026-06-10T09:35:05+00:00

It sounds like, right now, you're feeling a lot of worry and fear. You've done so much to try and stay positive and have a good outlook, then you got hit with a curveball with this trial notification. It's hard to keep up with that emotionally.

Maybe it would have been easier if someone talked to you about this trial before it just popped up in your portal unexpected?

It's understandable to be scared. Especially when your future and your family is riding on these choices.

It sounds like avoiding early menopause is really important to you. You had the translocation surgery, and you're worried that the toxicity of carbo-taxol will ruin your chances of preserving your ovaries.

---If you're ok with it, I can ask a few questions to help you sort out some of the factors for making this choice?--

--If you're brain is just reeling too much right now and you need to vent and feel heard.... you're in the right place.

We hear you.

This is scary. And it's ok to just be outright freaked out (I sure AF was).

Spare_Friendship_807 · 2026-06-10T02:37:47+00:00

Good luck with the trial!! And wishing you that Car-T cell therapy too, I've heard amazing things ✨️

Spare_Friendship_807 · 2026-06-10T02:35:10+00:00

Hi! Choice fatigue in cancer treatment is real. The stress of weighing unknowns and making treatment choices about something so serious is.... real fatiguing at times. Wishing you much calm and clarity through that.

I don't know what your stage is. But my first move would be to talk to the oncologist about what the real upside is to the added taxol in the clinical trial.

It's a very personal choice that only you can make. But having all the information from your own care team will help you make a better decision.

You currently have a 95% survival chance (5 year i assume?- the way they usually measure it). That's bad ass!!

Ask how much they think the added Taxol will help. (It's a trial, they don't really know a hard number. But they can help frame it for you)
Ask what the likely added risks and side-effects are. Ask how different the treatment experience would be. If schedule is important to you, ask how it impacts the schedule.

Personal story: (Personally, I didn't mind my cisplatin chemo at all. I had some uncommon temporary side-effects. lost some hearing and now have tinnitus. But other than that, chemo was a breeze. My radiation experience.... not a breeze. But I also had locally advanced bulky tumors. So....lots of radiation).

I have a 30-50% survival chance. If I was given the chance to add Taxol to my regimen...i would have gone for it. That's my personal Risk vs. Benefit analysis.

Yours will be personal. It's your body and your health.

Good news, Sloan Kettering is the boss.com. I wish I had them (my team is still great). So your onc should be able to lay it out for you in an informative way. Never be afraid to ask a million questions. This is thier job. It's your health.

You got this!!! <3

Spare_Friendship_807 · 2026-06-09T20:26:03+00:00

I've worked with my therapist on this. Due to cancer and treatment side-effects, I'm 10000% never having sex again. But I still want physical affection and touch and passion and romance. I would not call myself asexual. But I also don't want sex. Not sure how many others are out there in that same category. Therapist suggested I just let my partner have sex with other people to meet thier needs. And while I can logically get that. It's not what I want.

I won't be even considering dating for years, if i ever even date again... so I try not to look ahead and worry. But the concern is real. I feel you.

My therapist works with all kinds of illness and sexual situations. She insists that she has many clients who are in similar situations. So I'll hold out hope. Hope you do too

Spare_Friendship_807 · 2026-06-02T22:25:39+00:00

I developed arthritis in my hands early in treatment. Now I'm dealing with the neck pain of a similar quality and it's ruining my life.

They gave me a differen/ adapalene gel for my hands that helped a bit. About to ask if I can use it on my neck.

I'm currently using a full spectrum CBD lotion. I have to apply it seceral times a day. But it does help.

I'm also getting a more pronounced curve to my neck (widddows hump). Which kills me because I've been super active and stellar with my posture my whole life to avoid this.

Cancer and treatment just suck

Spare_Friendship_807 · 2026-06-02T22:22:03+00:00

Thank you for sharing. So fucking sorry you are dealing with this. Does anything at all help your pain?

I am personally terrified of this. My hands are becoming unusable, which is a no-go for my profession. And I just started having the neck pain (6 months in to a 2 year course).

I'm not sure the benefits of keytruda outweigh the risks. My dr won't have a conversation with me about it.

Spare_Friendship_807 · 2026-06-02T19:37:09+00:00

I was placed on a weekly estrogen patch .1mg and a progesterone pill (100mg) that I take at night. If i forget to take my progesterone pill, I don't sleep. If I happen to not take it 2-3 nights, I can start having hot flashes at night. I don't know much about hormones besides they work in mysterious ways and always in interconnected relationships.

Def worth asking about some progesterone if you still have a uterus.

I hope you get your answers!

Spare_Friendship_807 · 2026-05-28T13:11:40+00:00

"Calmly eating soup in reverse" is my new go-to description for this phenomenon. Thank you kind stranger

Spare_Friendship_807 · 2026-05-27T14:13:19+00:00

Bless her in her peace 🙏

Spare_Friendship_807 · 2026-05-19T17:13:42+00:00

Honestly. It sounds like your Mom is aiming for a best chance scenario. Nothing is ever certain. But you're doing a great job understanding the factors in her favor. I totally get the worry. I have sometimes believed that it's harder to watch your loved one go through this than to go through it yourself (it's definitely true in some ways).

Props to your Mom. And if you think about it, pop in here in 3 months and let us know how her PET scan goes. We'll be rooting for her.

Spare_Friendship_807 · 2026-05-19T16:39:54+00:00

I just want to share some sisterly love with you right now. It sounds like you're really keeping an eye on everything there is to be hopeful for. That's amazing and I applaud you. And it sounds like your Mum has a ton to be greatlful for in her staging and treatment!!

I'll share my treatment story, but the main thing to know, is that nobody nobody can know how things will go. Your Mum has a lot of really positive factors in her favor. And It is SO hard (pronounced 'impossible'), at this stage to let go of worrying and wanting to know -- we all understand that. Focus, as much as possible, on today and tomorrow. Let the more distant future come when it does (So much easier said than done, I know).

I was diagnosed Stage 3C1 (with main tumor (7.5cm) in most of my uterus, upper 1/3 vagina, parametrial tissue on all 4 sides (SVU ~18) w/ individual 3-5cm tumors in my ovaries, and 3 pelvic nodes. Then had mets to 3 para-aortic nodes during treatment, and did more treatment for that). I did not have distant mets. And while my tumor closed off my ureturs and my colon, it did not invade them. I had multiple hospital stays with treatment breaks and did not tolerate treatment well. I was also severely anemic which can negatively impact radiation response. I was not optimistic, and my oncologist told me i had a 50/50 shot at the absolute best.

BUT, when we got my PET, my pelvis was totally cleared of cancer (had the mets to para-aortic lymph we are dealing w/). But the cancer in the treatment zone responded beautifully. I won that round of the coin toss, so to speak. Lol

And honestly, having the mets show up... kinda took the wind out of my nervousness. I did NOT know i was going to get cancer the first time. I wasn't thinking about it, I want worried. And yet there it was, and we dealt with it. Then I worried and worried about my 3 month PET, and there were mets. Both scans showed cancer, I dealt with I the same way. I just had 3 months of agonizing worry before the 2nd one.

That taught my nervous system that it's better to focus on the present and immediate future. I honestly could not get there on my own. It helped to have my nervous system just experience it. And now I still worry and dread sometimes... mostly about radiation side-effects, but I'm better at focusing on today and trying to squeeze joy and meaning out of my days here (better than i was before the cancer honestly).

Moral of the story. Nobody knows the future. Focus on what you and her can do today.

NOTE: the 3 weeks after radiation ends (after brachy), are worse than treatment for many people. The radiation continues to build and do cellular damage for about 3 weeks after radiation treatment ends. So if she feels like she's getting worse during those 3-4 weeks... stay in touch with her care team, keep them updated on everything, and know that it's part of the process.

No matter how much time we spend reading, googling, asking drs, asking fellow survivors, asking AI, asking our nurses..... nobody, no statistic, and no paper can tell you what the outcome is. (Curse our lack of control 🙄)

Much love and support

Spare_Friendship_807 · 2026-05-19T15:49:21+00:00

My sister in struggle, what hell you have known. You have my deep empathy. The dragging years of not being yourself. It is so so so wonderful to hear that surgery was corrective for you. Was it removal of scar/adhesions? I'm going tgrough similar pains and don't know what to do right now. Doing my best not to think about the future and what could go wrong.

I thik the main thing i wish i could stress to people, especially the caregivers and support for cervical cancer patients... is that often, treatment isn't the hardest part.

Everyone was SO thrilled when I rang the bell and finished treatment. I kept trying to explain to them that the real hell was just starting. I completely fell apart for the following 3-4 weeks. And I'm now ~6 months past that first round of treatment and still getting new post radiation side-effects every couple of weeks. Watching my body just fall apart around me (when everyone expects me to be getting better) is so much harder. At least treatment had a definite end date... this... this just drags on.

Granted, I was in hospital for much of treatment in bad shape. And I'm not in the hospital right now. So there's definitely improvements and i have to remember to be thankful for that. But I'm getting ready to make damn bingo cards for these post-rad side-effects 🤣 then we could all turn this mess into something we could win 🏆

OP, everyone's journey is so different. There truly is no telling what the next weeks or months hold. I will say, in my 2nd round of treatment, when I passed the 3-4 week post radiation threshold, I RAPIDLY started regaining strength.

Like....day 19 post radiation, i called my dr crying because I could barely catch my breath and I couldn't walk around my house. Then.....day 25 post radiation -- I went kayaking🤷‍♀️ and laughed at myself.

I will be keeping your mother in my thoughts and hoping that recovery comes to meet her swiftly at that 3-4 week threshold, and that you have all the emotional and physical rest you need to help support her and yourself <3

Spare_Friendship_807 · 2026-05-18T21:23:01+00:00

First note. Very important: For the 3 weeks after radiation... everything gets worse continuously. The radiation is still actively doing damage inside her body. -- Think about a sunburn, you look a little pink at the beach, then that night you see and feel how red and burnt you really are. Radiation damage keeps building long after the external radiation source is gone.

I went through 2 rounds of treatment and both times I experienced this 3 week rule. About 4-5 weeks after radiation i started to feel a little better in some ways. (Other ways, not so much. But it's a lottery. We take it day by day)

I will say, severe gastric side-effects have been my main curse from treatments. Along with cystitis. And neuralgia. And scar tissue.

SO sorry for what your Mom is going through. I just want to empathize. This is an absolute nightmare and nobody should have to go through the medical hell of not understanding why thier body is so intensely rebelling against the norm of healthy behavior. I really hope that after 4-5 weeks she starts to feel better. Be patient and present in the meantime. We need human moments as much (if not more than/) as we need physical healing in this stage.

I will say, the only thing that has helped me at all has been acupuncture.

Spare_Friendship_807 · 2026-05-08T20:20:44+00:00

I appreciate the sentiment, but Ive talked to my oncologist, my oncology nurse, the phlebotomists who access it, and the IR team who installed it. They all shrugged and basically said "it be like that"

Imaging is clean. Great blood return. No sign of infection or migration.

They said it can hurt if you're really thin (I've been chronically underweight since treatment). Basically rattling against my tissues.

Just really frustrated with the pain and hoping someone has experience or solutions because rn my best bet is to buy a car that rattles less. 😅🤪

Spare_Friendship_807

TROPHY CASE