› Forums › General Melanoma Community › Update and reassurance needed…
- This topic has 14 replies, 7 voices, and was last updated 7 years, 12 months ago by
regansmom.
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- August 30, 2017 at 6:55 pm
Hi ladies and gentlemen,
It has been a couple tough weeks for my fiance and I.
Just to recap on some stuff and timeline.
My fiance had a punch biospy done at the start of Aug, recieving the news that she had melanoma within the first week of aug.
We ended up getting a slightly more thorough copy of the biopsy report.
Breslow .88 , mitiotic rate 1, Clark level iv. No ulceration, no signs of vascular invasion,satlllite mets or regression.
Deep margin: clear
Lateral margin: some superficial spreading melanom left in situ
Special notes: A SLNB is reccomended due to patients age (under 28) and the deeper dermis invasion of the original tumour.
We have a surgery date booked at the top cancer hospital in Canada for early october, it just seems like such a long wait (a little under two months from when the referall was sent out). I understand her stats dont put her at the top of the priority list,….but the wait is very hard (day by day as Bubbles mentioned) and does seem long.
Sometimes we debate going to a more local treament center (not necessairly specialist) that would do the SLNB and WLE but there is the scary thought that if she needs follow up treatment (god forbid), the Toronto hospital is the place we would want to be.
What is the reason for such a long wait? One of the doctors we saw explained it to us that, usually with the initial biopsy and the main tumor being removed, there is way less chance of the cancer going to the lymph nodes after…basically saying that the time between the initial biopsy and the surgery is not as important (as Janner alluded to as well).
Bubbles and Janner mentioned about taking the time, even if it is extra, to set up things how you want them set up….its just so hard the wait, especially when I see people posting on here, frusterated about having to wait 2 weeks till surgery.
Can someone talk this through with me again. Just need some outside perspective, as worried thoughts and tiredness cloud my judgment.
Thanks
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- August 30, 2017 at 6:57 pm
Bubbles, Celeste and Janner*** as well as everyone else
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- September 12, 2017 at 10:57 pm
am so sorry that you are having to go through this. As a fellow Canadian, I know that long waits are very hard to deal with. I just had my WLE after being diagnosed in early July. I have used Wellspring, my local Cancer Support Centre here in London, which has been a great help to me in dealing with my anxiety and feelings about this diagnosis. They have very knowledgable volunteers and staff who can be there for you and your fiance. Unfortunately, we don't have all of the choices that Americans do when it comes to health care providers and our wait lists are long.
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- August 30, 2017 at 7:10 pm
Unfortunately that is one of the big downsides of the healtcare system in CA, long waits. Hopefully other CA residents will chime in and maybe have advice as to how to get a sooner surgery. I personally would not want to wait that long for it even though I know other patients have been in similar shoes. Definitely take this time to research melanoma specialists in the event that her SLNB comes back as positive for mel in the lymph nodes, it would be great to have a couple melanoma oncologist options to reach out to right after you know the pathology after surgery. Again, CA residents will be better at guiding you to the right cancer centers/hospitals to look to find a specialist.
Sending you a big hug, you're her rock right now and that can super hard. I was 28 when first diagnosed and the beginning of this whole process was hard on both my significant other and I.. and without his awesome strength to go online and find resources like this for information, I'm not sure where I would have ended up.
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- August 30, 2017 at 8:49 pm
I too was stunned by the lack of urgency expressed by my (US) surgeon's office in scheduling. I'm not sure I would break out the health care debate on this one.
This blurb linked below helped my calm my outrage.
Remember Adam Ant? Song called "Desparate, but not serious."
("your kisses drive me delerious").
The new gravity is heaviest until the muscles start adapting.
Deal with this only when well rested.
muah.
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- August 30, 2017 at 9:16 pm
If you are headed to Princess Margaret I think you will find they are both responsive and comprehensive. I am there and while some processes take longer than others, I have had excellent experiences and I think waits vary by urgency more than anything – I have had very quick appointments for consults and radiation. Top notch surgeons, really up on all the latest treatments and research. Good luck!
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- August 30, 2017 at 9:33 pm
Hi Kyle – I do hope they did the dye test to find the correct group of nodes (you were originally set up for a derm's in-office procedure where that wouldn't have been possible, so I hope you switched). And this is as previously discussed – an SLNB is not done automatically here – it's based on the findings of the WLE (so, nothing has changed). At least they are going to do it!!!
You may be right though about the wait for that being due to the facility if you are actually talking about PMH – yes, they're doing ground-breaking stuff there but as time goes on they become more of a research hospital while remaining the "big treatment centre" for the blood cancers – leukemia and lymphoma.
The regional cancer centres are treating more of the other cancers and finding a mel specialist connected to one of them might be easier for you (or someone with a dual specialty) – e.g., Juravinski where my sister receives treatment, is now treating more patients than any other facility in the province (and that's Hamilton).
Hang in there, you'll both soon be through this and hopefully neither of you will have to worry again!! Take care.
Barb
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- August 30, 2017 at 11:29 pm
Oops, sorry Kyle, I think I read that incorrectly >> so there was no other surgery yet, no WLE?
Barb
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- August 31, 2017 at 12:21 am
Yep, I can see where that would be the best and I know that is pretty standard in the US … but that was not our experience here Dec 2014 – Mar 2015 and in our case they knew from 1st biopsy (before WLE), based on depth, that they would be doing the SLNB. Dye test was done on same day as WLE, SLNB was about 2.5 weeks later and CLND about 2.5 weeks after that. I've since tried to clarify that or find out if it's changed, for my own information, and the only answer I get is that these decisions are based on the path report (and from that I assume they mean WLE findings).
I can tell you this, more than once I've been jealous about treatments and procedures (doctors' attitudes) that I've read about on this board because, sadly, I know they are not available here 🙂
Barb
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- August 31, 2017 at 12:33 am
I am not knowledgeable enough to know what might drive a decision to defer the actual SLNB but can offer that mine was done in 2009 at the same time/day as my WLE. I did not go on to require the CLND though. I didn't know enough to question at the time, I was just told that was the process.
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- August 31, 2017 at 1:11 am
Me neither really – I only know what was done for my sister and what her onc says. Her WLE was done in hospital (McMaster), by a surgeon who works with the onc and everything took place according to the procedure they described to her … and each part of it a couple of weeks apart. We didn't know enough then to question either – I still don't for my own comfort levels!!!
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- August 31, 2017 at 12:44 am
Hi Barb! Just wanted to say that is a really different scenario your sister went through, from everything I have read and my own experience, that is not standard of care, no matter what pathology says. Basically how it goes (most of the time), after the first biopsy pathology report comes back and shows that the lesion is at least 0.80mm deep then the next step is they schedule surgery for both the WLE and SLNB on the same day. Patient goes into nuclear medicine in the morning for the injection to find sentinel nodes, comes back for surgery later, the SLNB is performed first in the surgery and then the WLE is second. Typically WLE has clear margins and that pathology report is usually boring. The SLNB report comes back around same time as WLE report and that's always the more interesting and nerve wracking report.
I wish I could wave a magic wand so that your sister always has super timely and excellent care, it is what all patients deserve… which is why I recently took on a full time job with an excellent healthcare company helping make sure patients get all their needs met in a timely manner… doing my small part to help out in this crazy world. 🙂
Sending love to you both,
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- August 31, 2017 at 2:38 am
Ahh, thanks Jenn 🙂 Thankfully, Leisa (my sister) is getting excellent and timely treatment now!!! But I am really p'd to think that something in "the chain" of her dx and treatment might not have been right – given the progression she experienced and everything she went through!!
Right now though, I am pleased for Kyle's fiance that she will get her SLNB!!
Take care all!!
Barb
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- August 30, 2017 at 11:48 pm
Hi Jabujj,
I am glad you got approval for the SNB AND get to have it done at a top notch institution!!! That is awesome!!! Given a diagnosis of melanoma that NOBODY wants….you got the best possible option. I (and Janner) have given you all the info that supports what your doc said…which is…the time frame you are looking at…makes absolutely NO DIFFERENCE in result! Additionally, it is still statistically sound to bet that your fiance will NOT have a positive node.
Either way, if you are lucky, melanoma is a long game. I have been in this maelstrom since 2003. That is a blessing in this circumstance. So, again, I urge you to start looking at the future with an eye for the need (even in the best possible scenario) continued observation and attention. This will take patience and fortitude. Waiting sucks. It always will and it will happen far more often that you wish it would. Turn your energy currently applied to worry and rehashing what is known…to supporting your fiance and LIVING!!!! LIVE EACH DAY AS THOUGH IT WERE YOUR LAST! Don't let melanoma win today.
I wish you both my best. celeste
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